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A Message From ATOS Miracles On WCA Disallowance Or Appeals

January 27, 2016

Benefits And Work Readers Reveal The Truth About PIP Assessment Centres

January 27, 2016

Same Difference was unpleasantly surprised to see this post last week on Atos Miracles Facebook page.

Then Benefits And Work published this article yesterday with responses to their request for information on PIP assessment centres.

Are you assuming that you’ll be able to get into the building without difficulty when you attend for your Atos personal independence payment (PIP) assessment? That the examination room will be on the ground floor, rather than the sixth floor? Or that there will be accessible toilets you can use after a very long journey and possibly a further wait to be seen?

If so, please read on – because the truth may be very different

Your responses
In our last newsletter we asked readers to give us details of the PIP assessment centres they had attended.

We still need lots more responses – there are well over a hundred centres that we haven’t received any comments on yet. But the replies so far have already begun to paint a picture of facilities that are sometimes far from fit for purpose.

Below you can read about some of the problems readers have faced when attending an assessment centre – aside from the huge distances many have been asked to travel – and be forewarned about some of the access problems you will encounter at specific venues.

If you can add any information, or confirm details that’s we’ve already published, you’ll be doing other PIP claimants a real service.

(We’ve corrected typos and similar in some of the posts below, to help with readability)

Getting information
Getting detailed access information about the centre you are visiting can be a real problem. Several people told us that when they had tried, they had only been able to speak to a call centre worker in Stockton-on-Tees with no local knowledge. A reader sent to the Brighton PIP centre explained:

“Prior to visit I tried to contact the centre regarding parking and access, however you cannot call them directly and had to speak to Atos in Stockton-on-Tees. Obviously the guy there didn’t have a clue and had to call the centre, but still wouldn’t let me talk to them.”

Finding your way
Even finding some venues can be a challenge. For example, the PIP assessment centre in Sunderland proved tricky for this reader:

“The only complaint I would have about the centre is that it is very poorly sign posted and we drove past it a few times – the satnav said we were there but there was no centre to be seen. Eventually we pulled up a little road and spotted it tucked away in the corner, but we were a minute or two late for the appointment, and the fear of not arriving in time, and the appointment being cancelled, was very stressful.”

Readers are able to offer helpful information about finding some venues, such as this PIP centre in Blackburn:

“Hillview is at the back of main hospital car park up some steps, but if you’re in a car you by pass the main entrance and take the next entrance, think it says staff parking, then follow signs for Hillview there is limited parking at entrance with a couple of disabled bays . . . By public transport the bus stop’s at main hospital door so you’ve a good walk through car park to get to Hillview.”

And there’s a short cut to this Manchester assessment centre:

“The directions neglect to inform you that there’s a passage in one of the arches in the shops further down from the bus stop.”

Parking problems
Not surprisingly, parking is a huge issue for many members. Some centres, such as this Gateshead one, have no parking at all:

“No disabled parking whatsoever as parking is shared with all the other units and parking spaces are tight so there is no easy way of getting in and out of a car if you are lucky to find a space.”

It might even be necessary to do your grocery shopping before you can park at the Blackburn PIP assessment centre according to one poster:

“There is a car park (Morrisons) facing ATOS on Cicerly Lane, nearest parking spot about 100 meters from ATOS entrance if disabled ramp used. From covered parking about 200m. However not sure if car park belongs to Morrisons. If so it is a requirement that the parked car is that of a Morrisons customer. Then going through Morrisons and making a purchase put a distance at about 400 metres from car park to Atos.”

Even if there is parking at the centre, you may not be able to get near it, according to a reader who attended a centre in Liverpool:

“This centre says it has its own parking but barrier was down so we parked in Asda car park which is about 50 metres away. If you are dropped outside then you only need to walk about four metres to the door.”

Or there may be parking on site, but if you’re in the Portsmouth PIP consultation centre you have to try to guess which spaces you can use:

“Office has parking immediately outside but only in specific bays, letter warns of adhering to this yet bays weren’t numbered.”

The lack of parking even means that some people have to negotiate oncoming traffic and an obstacle course to get the door of the assessment centre, as was the case at East Grinstead for one of our readers:

“We had to park a distance away as there was no parking available outside. My wife then had to push me in my wheelchair along a road with no foot way. We had to give way to cars several times. Once we were near to the office, my wife had to move two wheelie bins from the pavement so that we could struggle up onto it as there was no dropped kerb.”

Getting through the door
You might think that enabling people to get easily through the front door was a bit of a necessity for a disability benefit assessment centre. You’d be wrong.

Buzzers and entry phones proved a significant problem for some people. For example, in Castleford:

“To enter you need to push a button for staff to open the door for you. I had to press it a few times really hard to get the door open. You can’t hear the buzzer, so you need to listen for the lock to release the door.”

Noise is an issue in Ipswich too:

“You press a bell button but due to traffic noise you can’t hear them answer, which can’t be helped. I just assumed someone had spoken and said my name.”

Outward opening doors cause problems for wheelchair users in Carlisle:

“There is a ramp for wheelchair access but the doors to the building open outwards so you will need help opening them . . . Wheelchair access at the top of the ramp involves two tight 90° turns and the front doors are awkward and definitely need someone else to help with them. My husband struggled trying to hold the door open and wheel me in at the same time. My assessor held the doors open for us on the way out which made it much easier.”

Whilst the PIP assessment centre in Ormskirk manages to cause problems both with their buzzer and their doors.

“The way in is ground floor via a buzzer and the doors are nigh on impossible to open alone if you have any restrictions or need crutches/walkin g sticks. The buzzer was too high for me to press and speak into. I am a bit less than 5ft now.”

Bexley Heath is one of a number of centres which have one or more steps leading up to the front door:

“It has a step at the entrance. It is NOT wheelchair friendly. The staff try to leave the door open before appointments to enable people to enter more easily.”

Not ground floor
Most people would expect assessment centres for disability benefits assessments to be on the ground floor – it’s just obvious that that’s where they need to be.

Obvious to anyone but Atos according to this reader. Bolton may hold the record as the loftiest PIP assessment centre:

“The ATOS assessment is conducted on the 6th floor. You are not told this until you present yourself to the main reception. There is a lift but if you have mobility issues it could be a problem.”

Pudsey’s assessment centre is ‘only’ on the second floor, but seems to make up for that by placing the examination room at a distance from the lift:

“The medicals were done on the second floor. I experienced a very long walk to the room where my medical was done. This necessitated needing chairs to be put out for me to stop and rest – before the lift, outside the lift and halfway down the corridor. There was no way I could’ve managed to walk the distance otherwise.”

Meanwhile, in Brighton they seem to have spread the facilities over several floors:

“There is a lift up to the floor where the assessment takes place and there are toilets on the landing between this floor and the floor below, but disabled toilets are located on a higher floor.”

Toilets
Having accessible toilets is clearly a prerequisite in assessment centres, given that people may have had long journeys to get there and may have a further long wait before they are seen.

At least, you’d think they were a prerequisite. But, back once again in Pudsey, they don’t sound that easy to get to:

“I needed the toilet halfway through my medical, but the toilets were down a flight of five steps and inaccessible on the second floor.”

One reader who used the Edinburgh PIP centre was entirely prepared to shame Atos with a waste paper basket if necessary

“Toilets are impossible for wheelchairs . . . Door to interview room is very narrow, extra wide wheel chair could not get through. If I had not been able to walk a few steps I would have had to hold my interview in the hall. I would also have had to wet myself or use a waste paper basket to pee into if I could not have managed to walk 3 steps to toilet, and trust me, I would have done just that to shame them.”

Tell us more
We’re really grateful to all the people who have provided information already. But our aim is to be able to provide users comments for every single Atos PIP assessment centre and then move on to Capita’s facilities.

So, if you can help, please find the assessment centre you know about by starting with the regional index.

Same Difference would also be very interested to hear more information on this. We will publish as many such stories as possible, so please leave them in our comments or email them to samedifferenceone@hotmail.co.uk. Please include the location of your assessment centre.

 

Toy Like Me Announce Unveiling Of Lego’s First Disabled Minifigure

January 27, 2016

Same Difference joins the celebration and sends our sincere thanks to Lego.

An Extract From Scapegoat By Katherine Quarmby To Mark Holocaust Memorial Day

January 27, 2016

Katherine Quarmby, respected writer and Disability Hate Crime campaigner, is so right in this extract from her 2011 book Scapegoat.

What became known as the Holocaust started with the elimination through murder of disabled people, with the T4 programme.

History teachers need to include this aspect in their teaching of the Holocaust. The Holocaust was not just about eliminating the Jewish religion, it was about eliminating differences and anyone who lacked Hitler’s idea of perfection.

RIP every victim of the Holocaust. Same Difference calls for age-appropriate teaching of all aspects of the Holocaust all the way through the National Curriculum and in all A Level and University level History courses.

We can never forget- we must remember and learn and be taught that the Holocaust can never happen again.

 

 

Welfare Reform And Work Bill Will Remove The ESA WRAG And Similar Component Of Universal Credit

January 27, 2016

Readers, we apologise if you already have this information.

However, recent comments on another post, by reader loozbitch, informed Same Difference that, if the Welfare Reform And Work Bill becomes law, it will remove the Work Related Activity Group component of ESA.

We have been aware for some time that the Government wanted to scrap the WRAG, but until now, we were not aware that the complete removal of the component has been written into a potential law.

We requested more information from reader loozbitch, who sent us this very useful document, written for the House of Lords, which clearly states that one of the aims of the Welfare Reform And Work Bill is:

• Removing the work related activity component in Employment and Support Allowance [ESA] and the limited capability for work element in Universal Credit.

We are very scared for the many claimants who are in the WRAG and would lose so much if the component was scrapped.

We will do our best to follow the progress of this Bill and this proposal, and to keep you updated.

How To Die: Simon’s Choice

January 27, 2016

The final moments of assisted suicide campaigner Simon Binner are to be shown in a BBC2 documentary next month.

Filmed over the last few months of Binner’s life after he was diagnosed with motor neurone disease, How to Die: Simon’s Choice explores what the BBC called the “unimaginable decision” he took.

The story is filmed against the backdrop of a parliamentary debate held last year about the issue and follows the arguments made by both sides.

Binner, who announced on LinkedIn his desire to end his own life, wanted his death to support a drive to change the law on assisted dying.

Confronted with the possibility that Binner might want to end his own life, his wife Debbie was initially relieved when the assisted suicide bill was defeated in parliament. “I’ve always been quite anti-assisted dying,” she said in the film. “It’s one of those dinner-party conversations you have, never dreaming that you’d ever actually be having the conversation.”

However Binner decided to make an appointment at a Swiss assisted dying clinic and the cameras followed him from June of last year through the decision he made with his family to go ahead with his plan. His last moments were recorded by film-makers Rowan Deacon and Colin Barr.

BBC head of documentary commissioning, Patrick Holland, said: “This is a hugely important and powerful film about one of the most contentious issues facing families in the UK. Simon, his wife, family and friends have allowed us into their lives as they face one of the biggest dilemmas imaginable. Together they confront the terrible choices involved, with love and humbling candour.”

BBC2 channel editor, Adam Barker, said: “BBC2 has a strong track record of showing ambitious, compelling authored singles such as Vanessa Engle’s film on domestic violence or Robb Leech’s film, Welcome to the Mosque and we’re very proud to be bringing this thought-provoking film from award-winning film-makers Rowan Deacon and Colin Barr to the channel. The film sensitively explores the issue of assisted suicide with intimate access to one family facing up to one of the toughest decisions there is to make.”

The programme is due to air on 10 February but is not the first time that an assisted suicide has been shown on British television.

In 2008 the Sky documentary Right to Die? (made by Oscar-winner John Zaritsky) seemed to show the moment when 59-year-old Craig Ewert, who also had motor neurone disease, died.

  • In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255 FREE. In Australia, the crisis support service Lifeline is on 13 11 14.

15% OF BRITISH PUBLIC HAVE WITNESSED DISABILITY HATE IN THE LAST YEAR

January 27, 2016

A press release:

15% of people have witnessed at least one hate crime or hate incident based on disability in the last year, according to research released today by the Holocaust Memorial Day Trust on Holocaust Memorial Day (Wednesday 27 January 2016).

In total, over a quarter (27%) say they’ve witnessed a form of hate crime or hate incident in the last year, defined as acts of violence or hostility directed at people because of who they are or who someone thinks they are. More than two thirds (69%) of those who’ve witnessed abuse of this kind say they regret not challenging it.

The research focused on five centrally monitored characteristics; race or ethnicity, religion or beliefs; sexual orientation; disability; and transgender identity.

Younger people seem more willing to challenge a hate crime or incident by speaking to the person responsible for the abuse. One in six (17%) of 16-24 year-olds said they had intervened during an incident in this way, compared to one in eight (13%) of 25-34 year olds and just 7% of 35-44 year olds.

7% of respondents said they themselves had been a victim of a hate incident or crime based on disability.

Holocaust Memorial Day Trust Chief Executive Olivia Marks-Woldman says:

“The theme for the thousands of Holocaust Memorial Day events taking place across the country today is ‘Don’t stand by’, and these figures show just how important that message is. Today is about remembering the atrocities of the Holocaust and subsequent genocides, but it’s also about finding ways to make sure they can never happen again. We know that silence and indifference in the face of discrimination and hatred allows persecution to take root, so we want to encourage people to stand up and speak out, in the way many brave souls have in the past.”

 

Forms of abuse

Across all incidents, verbal abuse such as name calling was cited as the most common form of hate crime or incident, seen by three in four (75%) of those who’d witnessed something in the last year. Nearly a third (30%) said they’d seen harassment, a fifth (20%) said they’d witnessed threats of violence, and 14% had seen physical attacks such as hitting, punching, pushing or spitting.

 

Victimisation on social media

More than a quarter of people (28%) said they’d witnessed abuse online through platforms like Facebook and Twitter. Three quarters (77%) said they felt that there is no difference between bullying or ‘trolling’ someone online and shouting abuse in the street.

Olivia Marks-Woldman added, “As well as taking stock of what’s happening in our own communities here in the UK today, we also need to be mindful of the fact that genocide is continuing in Darfur, where thousands of people have been murdered and millions have been forced to flee to makeshift refugee camps. We all need to reflect on the fact that the path to genocide begins with exclusion and discrimination, and that standing by allows hatred to take hold.”

New Play Tackles The Topic Of Stillbirth With Disabled Actors

January 26, 2016

A new play by award-winning writer Jack Thorne tackles the difficult topic of stillbirth.

Thorne – best known for his BBC Three drama The Fades and theatre work including Harry Potter and the Cursed Child – teamed up with the disability theatre company Graeae to make the play.

The playwright has been significantly disabled himself but despite the work featuring two disabled actors (one of whom is deaf) they maintain it is not a disability story – it’s about the pain of having a stillborn child, which can happen to anyone.

The Solid Life of Sugar Water is currently touring the UK and opens at the National Theatre in London on 26 February.

Carers Allowance Recipients To Be Exempt From Benefit Cap

January 26, 2016

Same Difference warmly welcomes this large piece of progress for carers.

Lord Freud announces government intention to exempt recipients of Carer’s Allowance from the benefit cap during yesterday’s Lords debate on the Welfare Reform and Work Bill

DWP Minister Lord Freud said:

“Amendment 24 seeks to remove carer’s allowance from the list of benefits that are included within the benefit cap. As written, the effect is that recipients of carer’s allowance with a benefit income above cap levels would still be included in the cap but their carer’s allowance payment would be disregarded from the cap. That is the way that this amendment works…..

We do not consider that the disregard which this amendment would create is the right approach. We want to go further; we will be exempting all recipients of carer’s allowance from the benefit cap, whether they are single or part of a couple. This approach fits within the wider government strategy to support and invest in carers. Many carers wish to enter paid employment and many have done so while sustaining the role. We recognise that in some cases, it is beneficial for both the cared-for person and the social care system if people are cared for at home. It continues to be the case that some paid employment, alongside caring, will be right for many carers. But our strategy to support carers through the Care Act and through wider investment strategies provides new, targeted opportunities for help and encouragement, where appropriate, to remain close to paid employment.

As I say, we will be exempting recipients of carer’s allowance from the benefit cap. This is of course complex and we will need to get it right…”

The Government will bring forward an amendment at Third Reading of the Bill.

This announcement follows the High Court decision Hurley and others v Secretary of State for Work and Pensions which held that the benefit cap was unlawful in discriminating against those entitled to Carers Allowance who provide care to relatives such as a parent or grandparent, or a disabled child aged 18 or over.

Maximus Offering Junior Doctors More Than Double NHS Starting Salary For Benefits Assessments

January 26, 2016

A government contractor is attempting to recruit frontline junior doctors with a pay-bump of more than double the average salary – to perform assessments on benefit claimants’ fitness to work.

In the last month, recruitment website healthjobs.co.uk lists added almost 100 job advertisements for “functional assessor” roles with Maximus, the US company contracted by the Department of Work and Pensions to carry out assessments of claimants.

Candidates, who are required to have two years post-qualification medical experience, are offered positions starting at £72,000 with some roles stretching to £98,000. The NHS salary for a junior doctor with two years experience would be around £30,000.

One NHS doctor noted on Twitter that the company – motto: “Helping Government Serve the People” – was in effect “paying drs to medically endorse a political agenda regardless of how it affects patients”.

The recruitment drive follows a National Audit Office report earlier this month which found that Maximus was “not on track” to meet government targets to reduce benefits costs.

The NAO suggested these failings were “largely due to problems reaching the full staff complement” and spiralling costs due to the “rising salaries for healthcare professionals”.

The British Medical Association (BMA) declined to comment when contacted by BuzzFeed News. An NHS Employers spokesperson also declined to comment, but said they had been aware of the practice for years, as it had operated similarly under previous DWP contractor Atos.

Maximus operates a number of divisions in the UK, two of which – the Centre for Health and Disability Assessment (CHDA) and Health Management Ltd (HML) – the DWP has contracted to determine claimants’ Employment Support Assessment (ESA) and Fit For Work (FFW) suitability.

Earlier this month, a Maximus whistleblower alleged medical professionals working for the company “questioned the ethics of what they were doing, and whether the tests were making people mentally and physically worse off”.

The average junior doctor’s salary for foundation year one is around £22,000, rising to £28,000 in their second year. Specialist training increases their salary to £30,000, and goes up to £47,175 for the most qualified, full registrars.

Maximus’ listings require “a minimum of two years’ post-qualification of broad based healthcare experience”, in effect asking for candidates about to begin specialising.

Last year, it emerged up to 3,000 doctors from abroad were hired to plug gaps in medical specialties, including A&E, radiology, ophthalmology and general medicine, due to chronic NHS shortfalls.

It comes amid a dispute between the Department of Health and junior doctors’ contracts, with doctors claiming health secretary Jeremy Hunt’s proposed changes to contract hours would compromise patient safety.

 

A spokesperson for the Centre for Health and Disability Assessments said:

 

“The focus for our recruitment is the private healthcare sector. Two thirds of the Healthcare professionals we have recruited since taking over the contract (March 2015) have come from that sector. Our functional assessors – doctors, nurses and therapists – are responsible for carrying out high quality assessments and we offer a competitive salary, in line with the market rate.”

Life As A Widowed Parent Carer

January 26, 2016

 

A heartbreaking article from yesterday’s Independent.

 

My husband, my soulmate for 27 years and father to our four children, passed away on 14th December.  He had lived for 13 months following a diagnosis of incurable, advanced colorectal cancer.

By the time he was diagnosed, it was already too late for the hope of a cure and he was too unwell to continue with his freelance work in management development.  He became eligible for a range of benefits, which got us through the year.  I was already unable to work, having been forced to give up a successful marketing career on the birth of our fourth child, Daisy, who has a rare and very complex genetic syndrome.  As her full-time carer I was being paid £62.10 per week in Carers’ Allowance.

Almost from the moment Andy drew his last breath, those extra supportive benefits we’d had during his illness stopped.  As a widowed parent I became entitled to apply for Widowed Parent’s Allowance, a non-means tested benefit which means that you can still work and claim it (it’s worked out based on your partner’s national insurance contributions).

I duly filled in forms and applied for the new types of benefits, all the while planning a funeral, attempting to celebrate Daisy’s eleventh birthday, and trying to navigate Christmas and New Year.

Days dragged into weeks, our paltry savings were whittled right down with the post-Christmas, post-funeral bills, and I started to think that maybe I should take up the kind offer of many friends who were willing to lend me funds to tide me over.

As I spent hours on the phone to various government departments, I pieced together the complicated package of benefits I could be entitled to.  My child tax credits claim was stopped and a new one started on a lone parent basis; I even received a leaflet on how to claim maintenance from my former partner. It seems that the concept of someone in their forties being widowed with four dependent children is pretty alien to some government departments.

Finally, today, nearly six weeks after my husband’s death, there is some light at the end of the financial tunnel. My claim for Widowed Parent’s Allowance has been approved.

And then the bombshell: you can’t be a widow and a carer – at least not in the eyes of the benefits system. It’s a case of one or the other; Widowed Parent’s Benefit cannot be paid on top of Carers’ Benefit, so I must lose one in order to keep the higher payment.

Our situation is being treated as no different to someone who has also lost their partner but does not have the caring responsibilities that I have. But as my daughter’s carer, I am on call 24 hours a day, seven days a week. Even last week, while Daisy was in respite care, I had to cut short a rare day off as she had become ill and needed to be blue-lighted to hospital.

I feel I have been dealt a double blow: I am grieving for the partner I have lost and yet my role as the full-time carer of a very disabled little girl is no longer recognised by the state.

In many ways it’s not even about the money; it’s the fact that my identify has been superceded by that of widow. Why can’t I be both widow and carer? Why must I choose between both? Why is there no room in the system to recognise the reality of my life?

I save the state thousands of pounds by managing my daughter’s very complex needs; I have developed more skills than many qualified nurses. Last year I was caring not just for my daughter but also for my dying husband, and my role has not ended with his death. Now my life has become more complicated: I am a widowed mother caring for a medically complex child.

Our benefits system, while excellent, puts carers at a disadvantage. Carers’ Benefit counts as taxable income, it is not payable if you are earning over £110 per week and it does not take into account if you are a parent carer with a child living at home.

My husband was the wage earner; now he is not here, my caring role has not ended, but I have to be both mum and dad to our children all the time. Simply what I am asking is for recognition of the role I play. I am more than a Widowed Parent; I am a Widowed Parent Carer, and it’s fundamentally very different. A refusal to validate the life I lead is a cruelty I never deserved.

How much more blatant does discrimination have to be?

January 25, 2016

Poppy Hasted's avatarPoppy's Place

Well, that’s interesting.

I am a Housing Association tenant and I have just received my quarterly residents magazine from the HA and I think I am being discriminated against.

Not me personally but me as a disabled person.

Apparently my area is a test area for Housing Association tenants who want to buy their own home under the Government’s much-trumpeted new ‘Right to Buy’ scheme. Now, I am not actually interested in buying, I am more than happy to go on renting, but I thought I’d read the article anyway just to see what was being proposed.

That’s when I found that I am not eligible, despite living in a pilot area.

Why, I hear you ask.

The reason, as usual, is simple. My impairment. The fact that I am severely disabled is proving to be a barrier once again. According to the article, some types of home and tenancies…

View original post 539 more words

No ‘Proper’ Wheelchair Access At Maximus Glasgow Assessment Centre

January 25, 2016

THE office where disabled Scots are forced to take humiliating fit-for-work tests has no proper wheelchair access, the Record can reveal.

Campaigners have criticised the Department for Work and Pensions and American contractors Maximus for failing to install a permanent ramp at their Cadogan Street premises in Glasgow.

Despite being Scotland’s main base for the hated assessment interviews, wheelchair users have to ring a bell then wait for staff to lay a temporary ramp over steps at the front door.

We watched as Tracy O’Connor, 45, waited in the rain on Friday to get into the building. She said: “I had to ring the buzzer then hope someone would come and help.

“A worker was out quickly enough with the ramp but it was steep and even he admitted as we were going in that it wasn’t a good system.

“I think it’s disgraceful that disabled people are not treated better at this office of all places.”

Maximus run the Tories’ benefits tests to assess whether disabled people are able to return to work.

They were handed a three-year contract worth £500million by Work and Pensions Secretary Iain Duncan Smith after French firm Atos resigned.

Marianne Scobie, deputy chief executive of the Glasgow Disability Alliance, said it would be up to lawyers to argue over whether the access at Cadogan Street was legal or not.

She added: “From the point of view of common decency and ethics, it is certainly not acceptable in my view not to have a proper wheelchair access.

“This building has been used to assess disabled people for various things for decades.

“In all that time, you would have thought that they could have a permanent ramp fitted.

“It’s not like it is a listed building or there isn’t ample room on the pavement to build a good entry system.

“When you consider the nature of the work carried out in this building, the least they could do would be to get proper access.

“There is a basic principle that buildings should be made easily and permanently accessible and that isn’t the case here.” Anti-austerity campaigner Sean Clerkin said: “It is disgusting that this firm are treating disabled people like second-class citizens, especially when you consider their work and the huge amounts they make for carrying it out.”

In 2012, it was revealed a quarter of premises where the tests were carried out lacked disabled access.

A Maximus spokesman admitted there had been one instance of a wheelchair not fitting on the ramp but said the DWP manage the building.

The DWP said: “Where an assessment centre isn’t directly accessible from street level, we endeavour to make this clear to people before they arrive for appointments.

“There is a ramp available at our Glasgow assessment centre – if people can’t use this, we will make arrangements to see them at an alternative location.”

 

GPs Told To Inform Patients That The DWP Will Extract Their ‘Fit Note’ Records

January 25, 2016

Details around practices’ issuing of Med3 statements for patients are to be extracted by the Government in a move described by GP leaders as amounting to ’state snooping’, Pulse has learnt.

The Department for Work and Pensions (DWP) will extract information from GP records, including the number of Med3s or so-called ‘fit notes’ issued by each practice and the number of patients recorded as ‘unfit’ or ‘maybe fit’ for work.

As part of the programme beginning next month, GPs will have to inform patients of the extraction, but cannot withhold information unless their patient explicitly objects.

These data will be published anonymously at CCG level, but DWP officials will have access to practice-level data – which they will not be able to pass on to other bodies.

GP experts criticised the decision to obtain practice-level rather than CCG-level data, and warned it could be used to create ‘league tables’ for practices and have a knock-on effect for other extraction programmes.

The ‘fit notes’ scheme allows GPs to refer patients who are in employment, but off sick to an occupational health service.

Under the extraction plans, the DWP said that ‘a small number of DWP analysts will have secure password access to the anonymous aggregated data at GP practice level.’

 These data – which will be published by the Health and Social Care Information Centre from the spring – will include the duration of fit note, patient gender, type of health condition, their location and whether workplace adaptations were recommended.

The DWP said it will use the data to ‘help provide a better understanding of why people take sickness absence in different areas across the country, so we can make the service as effective as possible for businesses and employees’.

It told Pulse no practice-level information would be shared outside the department, with a spokesperson saying: ‘Only the Department for Work and Pensions will be able to access the data at GP practice level.’

GPs, as data controllers, will be required to tell patients in person, via notices in the practice and on the practice website of the impending extraction.

But GP leaders warned that the scheme is an invasion of privacy.

Family Doctor Association chair Dr Peter Swinyard said: ’I think that is state snooping. Although I am sure some civil servant thought it was a terrific idea somewhere, I am not entirely sure I agree. I don’t know if patients understand that when I write a fit note, some bureaucrat is going to be able to have a look at it.’

GP and data sharing campaigner Dr Neil Bhatia said he was ‘not sure why’ these practice-level data were required, ‘other than to compare practices, create league tables, name and shame’.

He also warned that the extraction could have ‘knock-on effects’ on other secondary use data extraction programmes, such as care.data and the National Diabetes Audit, if it prompts more patients to log ‘type 1’ objections to data unrelated to direct care being extracted.

Questioning how useful these data would be, he said: ‘I think it would be extremely difficult to make sense of the information out of context of the consultation.’

The GPC was consulted about the plans.

Deputy chair Dr Richard Vautrey said the DWP has ‘responded to the concerns that we raised, not least trying to reduce the workload pressures on GPs that this might create and producing a generic fair processing statement for practices to use’.

Son Of Two Thalidomiders Opens Up About His Life After His Mother Inspired Call The Midwife Storyline

January 24, 2016

Wales Online have interviewed James Moriarty-Simmonds, whose parents are both affected by Thalidomide, as his mother, Rosaleen, inspired the recent Call The Midwife storyline on the issue.

Disability Campaigners Write Open Letter To Government Saying ESA Should Not Be Cut

January 23, 2016

Disability groups have written an open letter to Work and Pensions Secretary Iain Duncan Smith, urging him to abandon planned cuts to a key benefit.

The House of Lords will vote next week on government plans to cut £30 a week from Employment and Support Allowance (ESA) for some new claimants from 2017.

The letter says it will make it harder for disabled people to find work.

But the Department for Work and Pensions says the campaigners are “scare-mongering”.

“[The letter] fails to acknowledge that existing claimants and those with the most severe disabilities will not be affected at all,” a spokesman said.

From April 2017, ministers are intending to reduce the amount of money people in one category of ESA receive, taking approximately £30 a week from new claimants who are deemed to be capable of making some effort to find work.

The change will bring the benefit rate in line with Jobseeker’s Allowance.

‘Closer to poverty’

More than 30 charities and members of the Disability Benefits Consortium, including Mencap, Mind and Parkinson’s UK, and three peers, including Baroness Tanni Grey-Thompson, the record-breaking Paralympian, signed the open letter to Mr Duncan Smith.

The letter said the change would “push sick and disabled people further away from work and closer to poverty”.

“The government says this £30 disincentivises sick and disabled people from finding work, but it has so far offered no evidence for this claim,” the letter said.


Analysis

By Michael Buchanan, BBC social affairs correspondent

Ministers have struggled to control the cost of Employment and Support Allowance.

An analysis produced last summer by the Office for Budget Responsibility saw them once more increasing the forecast costs for ESA.

The official reason is that more people than expected are on the benefit, a consequence of an increasing number of people successfully appealing against a decision to deny them the benefit, and problems in processing fit-for-work tests that decide if claimants are eligible.

However, internal DWP documents I’ve seen previously suggest there is a belief in government that people are applying for ESA rather than Jobseeker’s Allowance.

They get more money on ESA and the demands to apply for jobs aren’t as great.

The planned reforms, for some new claimants in 2017, will bring the ESA benefit rate in line with Jobseeker’s Allowance and provide more support for people to find a job, albeit with tougher conditions if they don’t comply.

Ministers hope the reforms will save money and get more people into work.


Mind policy and campaigns manager Tom Pollard said: “There is a complete lack of evidence to show that stopping, or threatening to stop, someone’s financial support is an effective approach.

“In fact, pressurising people with mental health problems to engage in activities under the threat of losing their benefit is counter-productive, causing additional anxiety, often making people more unwell and less able to work.”

Jan Tregelles, Mencap’s chief executive, said disabled people were telling the charity “loud and clear” that the cut to ESA “will make their lives harder, with both their health and chances of returning to work being harmed”.

A DWP spokesman said the government was “committed to ensuring that people have the best support possible”.

“The current system needs reform because it fails to provide the right incentives, and acts to trap people on welfare,” the spokesman said.

“The truth is that ESA sanctions are falling, and are only used as a last resort for the tiny percentage of people who don’t take up the help on offer – fewer than 1% in any given month.”

National deafblind charity raises concerns over discrimination against British Sign Language users in Immigration Bill

January 22, 2016

A press release:

National deafblind charity, Sense has raised concerns that deaf and deafblind people in Britain whose first language is British Sign Language (BSL) could be indirectly discriminated against under the new Immigration Bill, and has gathered cross party support to table a key amendment.

The Immigration Bill, which is currently making its way through the House of Lords, aims to standardise a number of factors regarding the law on immigration and asylum.

Sense has expressed concerns regarding the requirement for public sector employees in customer facing roles to speak fluent English, fearing this will indirectly discriminate against deaf and deafblind people whose first language is BSL.

The amendment, supported by Conservative, Labour, and Liberal Democrat peers, along with the Bishop of Salisbury, would make it absolutely clear that the language requirement does not apply to those for whom BSL is a first language.

Kate Fitch, Acting Head of Public Policy at Sense, said:

 

“Sense is concerned that the Immigration Bill, as it currently stands, indirectly discriminates against deaf and deafblind people whose first language is BSL.

We are pleased to hear from the Government that this is unintentional. As such, we believe it is essential that the Bill is altered to reflect this and to remove any doubt or room for misinterpretation.

Our amendment, tabled by Baroness Lister, has been backed by Lord Swinfen, Lord Shipley, and the Bishop of Salisbury. We believe, if taken forward, it will make it categorically clear that the ability to speak fluent English does not apply to those for whom BSL is a first language.

The strong cross-party support we have received highlights the importance of addressing this vital issue as a matter of course, and we look forward to working with the Government to make sure this happens.”

The amendment will be debated at Committee Stage in the House of Lords on the 1st February when a decision will be made about whether it will be taken forward.

Can You Drive? The DWP Decides You Have A High Level Of Concentration

January 22, 2016

I’ve just spotted this on The People Vs The Government, DWP And ATOS Facebook page.

DPAC Need Volunteers To Speak To The Press

January 22, 2016

A message from Disabled People Against Cuts, which they have asked to be shared widely.

We need people who would be willing to speak to the press who are in ESA WRAG about the £30 a week cut to funding which is being proposed and how this would affect you.

 

We also need to have anyone living in Supported Housing who will be affected by the cuts to Housing Benefit and the amount allowed being restricted to LHA rates.

 

If you would be willing to help with either of these things please email us at mail@dpac.uk.net

Donald Grey Triplett: The First Boy Diagnosed As Autistic

January 21, 2016

Donald Grey Triplett was the first person to be diagnosed with autism. The fulfilling life he has led offers an important lesson for today, John Donvan and Caren Zucker write.

After Rain Man, and The Curious Incident of the Dog in the Night-time, the next great autism portrayal the stage or screen might want to consider taking on is the life of one Donald Grey Triplett, an 82-year-old man living today in a small town in the southern United States, who was there at the very beginning, when the story of autism began.

The scholarly paper which first put autism on the map as a recognisable diagnosis listed Donald as “Case 1” among 11 children who – studied by Baltimore psychiatrist Leo Kanner – crystallised for him the idea that he was seeing a kind of disorder not previously listed in the medical textbooks. He called it “infantile autism”, which was later shortened to just autism.

Born in 1933 in Forest, Mississippi, to Beamon and Mary Triplett, a lawyer and a school teacher, Donald was a profoundly withdrawn child, who never met his mother’s smile, or answered to her voice, but appeared at all times tuned into a separate world with its own logic, and its own way of using the English language.

Donald could speak and mimic words, but the mimicry appeared to overtake meaning. Most often, he merely echoed what he had heard someone else say. For a time, for example, he went about pronouncing the words “trumpet vine” and “chrysanthemum” over and over, as well as the phrase: “I could put a little comma.”

His parents tried to break through to him, but got nowhere. Donald was not interested in the other children they brought to play with him, and he did not look up when a fully-costumed Santa Claus was brought to surprise him. And yet, they knew he was listening, and intelligent. Two-and-a-half years old at Christmas time, he sang back carols he had heard his mother sing only once, while performing with perfect pitch. His phenomenal memory let him recall the order of a set of beads his father had randomly laced on to a string.

But his intellectual gifts did not save him from being put in an institution. It was the doctors’ order. It was always that way, in that era, for children who strayed as far from “normal” as Donald did. The routine prescription for parents was to try to forget the child, and move forward with their lives. In mid-1937, Beamon and Mary complied with the order. Donald, three years old, was sent away. But they did not forget him. They visited monthly, probably debating each time they began the long drive home to Forest whether they should just take him back with them after one of these visits.

In late 1938, that is what they did. And that is when they brought him to see Dr Kanner in Baltimore. Kanner was stymied at first. He was not sure what psychiatric “box” to fit Donald into, because none of the ready-made ones seemed to fit. But after several more visits from Donald, and seeing more children with overlapping presentations in behaviour, he published his groundbreaking paper establishing the terms for a new diagnosis.

From there, the history of autism would unfold across decades, playing out in many and varied dramatic episodes, bizarre twists, and star turns, both heroic and villainous, by researchers, educators, activists and autistic people themselves. Donald, however, had no part in this. Instead, after Baltimore, he had gone back to Mississippi, where he spent the rest of his life, unremarked upon.

Well, not exactly. Donald is still alive today, healthy at 82, and a major figure in our new book. When we first tracked him down, in 2007, we were astonished to learn how his life had turned out.

He lives in his own house (the house he grew up in) within a safe community, where everyone knows him, with friends he sees regularly, a Cadillac to get around in, and a hobby he pursues daily (golf). That’s when he is not enjoying his other hobby, travel. Donald, on his own, has travelled all over the United States and to a few dozen countries abroad. He has a closet full of albums packed with photos taken during his journeys.

His is the picture of the perfectly content retiree – not the life sentence in an institution which was nearly his lot – where he surely would have wilted, and never done any of those things. For that, his mother deserves enormous credit. In addition to bringing her boy home, she worked tirelessly to help him connect to the world around him, to give him language, to help him learn to take care of himself.

Something took in all this, because, by the time he was a teenager, Donald was able to attend a regular high school, and then college, where he came out with passing grades in French and mathematics.

Credit for these outcomes must also go to Donald himself. It was, after all, his innate intelligence and his own capacity for learning which led to this blooming into full potential.

But we saw something else when we went to Forest – and this is where we think the movie of Donald’s life would get interesting. The town itself played a part in Donald’s excellent outcome – the roughly 3,000 people of Forest, Mississippi, who made a probably unconscious but clear decision in how they were going to treat this strange boy, then man, who lived among them. They decided, in short, to accept him – to count him as “one of their own” and to protect him.

We know this because when we first visited Forest and began asking questions about Donald, at least three people warned us they would track us down and get even if we did anything to hurt Donald. That certainly told us something about how they saw him.

In time, however, as we gained more people’s trust, more details came out about how, throughout the years, Donald was embraced. His school yearbook is full of scribbled notes from classmates talking about what a great friend he is. A few of the girls even seemed a little sweet on him.

We learned that he got cheered for his part in a school play, that people regarded his obsessive interest in numbers not as odd, but as evidence that he must be some kind of genius. We met a man Donald knew in college, now an ordained minister, who tried to teach him to swim in a nearby river. When that failed, he tried to give Donald lessons in how to speak more fluidly, which was also something of a lost cause.

That is because Donald still has autism. It did not go away. Rather, its power to limit his life was gradually overcome, even though he still has obsessions, and talks rather mechanically, and cannot really hold a conversation beyond one or two rounds of exchanged pleasantries. Even with all that, though, he is a fully fledged personality, a pleasure to hang out with, and a friend.

What Donald’s story suggests is that parents hearing for the first time that a child is autistic should understand that, with this particular diagnosis, the die is never cast. Each individual has unique capacity to grow and learn, as Donald did, even if he hit most of his milestones rather later than most people. For example, he learned to drive only in late twenties. But now, the road is still his. Literally.

That is something of a perfect ending. And if the movie of Donald’s life gets made, we hope, when the credits roll, that a line on screen will say something like: “The producers would like to thank the town of Forest, Mississippi, for making this story possible.” But also, we would like to add, by making all the difference, by doing the right thing.

John Donvan and Caren Zucker are the authors of In A Different Key: The Story of Autism

Why Facebook Is So Important To BSL Users

January 21, 2016

Sign language users once had to meet at local deaf clubs to have conversations and share their views. Now, video on social media means things have changed, says deaf journalist Charlie Swinbourne.

There was a time when sign language users had to go to a local club to shoot the breeze, share advice or have any kind of conversation. It’s not as if you could just pick up the phone for a chat. Deaf clubs were a real community hub full of friends, families, board games and a barman.

In recent years, though, social media sites have started to replace the deaf club, with Facebook leading the way. Videos on newsfeed pages can be viewed for long periods and groups are easy to set up and join.

Last year, the importance of Facebook as an outlet for the sign language community was acknowledged at a high level when the Scottish Parliament set up a group on the site to gain supporting evidence for the groundbreaking British Sign Language (Scotland) Bill, which was passed in September, and aims to promote usage of the language.
When social media first became popular, the novelty for a sign language user was that they could appear just the same as anyone else via text. Many deaf people enjoyed being able to communicate more easily with their network of hearing colleagues, old school friends or family members for the first time.
But it wasn’t perfect because status updates had to be written in English text. In BSL, meaning is communicated through hands, facial expressions and body language. It has a different grammar and structure. Because of difficulties with acquiring language without hearing, many BSL users see English as their second language and often aren’t as fluent in English.

For example, in spoken English you might say: “The man climbed to the top of the big mountain.” But in BSL you’d establish the mountain first, like this: “Mountain, big. Man climbed up it, all the way to the top.” You’d show how steep the mountain was through your signs, and the effort the man took to climb it would be emphasised by your actions and facial expressions – almost like acting the part of the climber.

That’s why, when mobile phones and tablets with high-resolution cameras arrived, sign language users started creating their status updates in video, not text, filming themselves signing. Now a typical deaf person’s Facebook page is full of their friends signing, which is much more natural.

Video communication has led to some humorous quirks, such as the way that in some signed videos, instead of signing their name, people will sign “My name is…” then simply point in the air above their heads to where they know their name will appear in text when the video is posted to the site. So popular is Facebook that an in-joke has emerged whereby people at social events point above their heads after being asked their name.

Users of sign language have faced barriers to participating fully in mainstream Facebook groups because of the fact English isn’t their first language. But now there are all kinds of deaf groups, and in particular a real explosion in spaces where BSL users share advice, such as Deaf Opinions (or “sharing advice” to give it its sign-name) which has over 7,000 members. At the time of writing, the issues being discussed are as varied as computer problems, the menopause, and how to keep flowers alive in water longer. Another group, Deafland UK, gives its members fun challenges every week, which replicate the kind of games deaf clubs used to put on.

It’s this type of group in particular which provides the traditional function of a deaf club, but on a much larger scale.
Many think there are social benefits to online group-communication. Deaf comedian John Smith says: “Before we had social networking sites, many deaf people were isolated. Facebook is a place where we can release some of our frustrations about the barriers we face in everyday life.” Deaf academic John Walker also points out how Facebook has offered a lifeline for deaf-blind people or those who are partially sighted and find it harder to communicate at events held for sign language users.

The signed Facebook groups are also reminiscent of deaf clubs due to the style of communication used.

Deaf people were often thought to be more direct due to the nature of their visually-based language. Correspondingly, there is a recent trend for some deaf people to open up on Facebook about depression and mental health issues, finding support in the responses they get. “Deaf people are generally more frank than hearing people,” says Jen Dodds who runs a signed politics group, “this extends to social media too. Why wouldn’t it?”

The movement to an online space means that deaf organisations such as the British Deaf Association (BDA) have had to adapt. David Buxton, Director of Campaigns and Communications, says: “The BDA produces a large amount of video in BSL for posting on Facebook. This means deaf people do not have to rely on written statements or stories which they sometimes find difficult to follow.”

But Facebook isn’t as good as it could be for deaf people. While status updates can be posted in video, Walker points out that once you hit “reply”, the video option disappears and you have to revert to typing in English for all follow-up comments, and others point out how hard it can be to keep track of what people say because of the way updates fall quickly down timelines.

A more general concern is that Facebook’s popularity could lead to more deaf clubs closing, and fewer opportunities for people to meet and sign with each other face-to-face.

Most deaf people feel like the benefits outweigh any negatives. As Buxton says: “Facebook gives deaf people the confidence to come out and say things that they never would have said before because they didn’t have the platform to say it on. Confidence comes from being able to express your own thoughts in your own language – BSL.”

A Message From The Toy Like Me Campaign

January 21, 2016

We’re standing here, teeny weeny toy ‘cap in hand’ to ask you to chuck in yer change, wave us yer wonga, to help us make the toy box a better place for 150 million disabled children.

#ToyLikeMe would like to raise funds to build and run a website and turn our viral social media campaign into a lasting online resource which will celebrate disability in toys, advise parents and carers looking for representative toys and continue consulting and calling on the global toy industry to include disabled children in the cultural mainstream.  

 

Our Story – in the beginning 

#ToyLikeMe® was established in April 2015 after UK journalist Rebecca Atkinson noticed the lack of disability representation in toys. Rebecca had spent nearly 20 years working in TV production and print journalism (including Children’s BBC) and had always been interested in the way these industries represent disabled people, but this was the first time she had noticed the lack of representation in the toy industry. She called on some fellow mothers, and with their help, launched #ToyLikeMe on Facebook and Twitter to call on the global toy industry to start representing the 150 million disabled children worldwide. Read the full story in a Guardian newspaper article here. 

Going Viral 

We began making over toys to give them disabilities and asking other parents to do the same. The results soon when viral and our story was shared on news outlets around the world, including The Guardian, Mail, Metro, Yahoo, Distractify, Upworthy, Al Jeezera.

We appeared on radio in Australia, Singapore, Italy, UK, Canada. We were covered by news TV including CNN, Fox News, BBC, Channel 5, Sky TV and many more…we’ve lost count! We’d kinda stuck a match under a firework factory and it went boom.

 

Makie Dolls 

We spotted a company in the UK who make bespoke dolls using 3D printing. We contacted them and asked if they would produce hearing aids and a white cane for their dolls. To our delight they said yes and within two weeks they produced the world’s first 3D printed dolls with disabilities in reponse to #ToyLikeMe. We were so happy we fell off our toy box, and so did a lot of other kids and big kids! 

Petitioning 

Then we gave some Playmobil figures some waggy-tailed guide dogs and whizzy wheelchairs and started a change.org petition asking Playmobil to produce the figures for real. 50k people signed within a week and lovely folk at Playmobil said yes! They are currently developing products inspired by #ToyLikeMe for release in 2016/17. Whoopeee!

Next up we started a peition calling on Lego which has been signed by over 20k people. Sadly Lego didn’t respond so we launched a wheelchair Father Christmas design on the Lego Ideas platform where fans can vote for designs they would like to see made a reality. We’re still waiting for Lego to come out and play! 

 

Growing up

What started out as a little bean of an idea has grown up, up and away into a more giagantic beast than we ever imagined. We’ve had to put our paid work on hold to nurture the #ToyLikeMe giant and grow it into something that we hope will have a lasting impact on the industry. Fee fi fo fum! Boy, we’ve had some fun! We now have over 30k followers in 45 countries and every week more people join our ‘toy box revolution’. We’ve even had support from comedy genius Stephen Merchant and Gruffelo author, Julia Donaldson! 

 

 

Why do we need a website when we already have Facebook, Twitter and Instagram?

We scour the internet and dig deep in toy boxes the world over looking for toy products which represent disability to share with our followers. They do exist, but they can be hard to find and often are sourced from companies overseas.

On this journey we’ve kind of become experts in disabled toys. Every day we are contacted by parents looking for toys which will represent a particular disability to their children.

Whilst our facebook feed is a wealth of information, it is hard to search through, so information and resources get lost in the passage of time. Because we are committed to making kids feel good about themselves, we answer every email that comes our way, it’s time consuming and would be so much better if we could direct parents to an easy to search website where they could find all the informtion they needed to create a toy box bursting with positive represenation for their child.

We want to collate everything we have learnt on this playful journey in one place so that parents and carers can find the information they need straight away and not have to wait for us to find time to respond to their emails. We’ve bought the domain toylikeme.co.uk, all we now is the funds to set it up. 

 

What is out there now? 

There is scant resources for anyone looking for disabled toys at present. It’s a case of googling, and searching Amazon for random products and hoping you might stumble across something that represents the particulr condition you are looking for. It’s all quite hit and miss. We want to make it easy for parents and carers and give them a one stop shop where they can find everything from cottage insdustries making bespoke plush teddies with hearing aids to listings of global toy brands with representative products. 

 

 

How will we fund the website running costs in the future?

Once our website is up and running we hope to start to earn some small income to support the ongoing running costs of #ToyLikeMe though website advertising and click-through commission sales of toys from Amazon which have come via our website. 

 

How is #ToyLikeMe currently funded?

To date, #ToyLikeMe has not received any income, and this is where we come to you with our teeny weeny toy ‘cap in hand’ to ask for your help to raise the funds to carry on our work and build a website where we can create a celebratory resource for parents, carers, teachers, toy companies and children alike.

We’ve built a #ToyLikeMe community, now we need that community to help build us a website! 

If you would like more information about our plans and ideas read on –

 

Why do we need representation of disability in toys?

For disabled children growing up being the only one in your class or school to use a wheelchair or a hearing aids and never seeing children like you in books, TV, films and games can lead to a sense of isolation and low self esteem. To see yourself reflected by huge toy brands like Playmobil and Lego is about more than just a toy. It’s about these brands saying that you are worth it, that everyone should be included and celebrated, not just able bodied children. But #ToyLikeMe doesn’t advocate that toy companies should make disabled toys for disabled children per se. What we believe is that ALL children will benefit from incidental disability being positively included in toys. If we create a more inclusive toy box, then perhaps we can educate by stealth and help change attitudes in the real world too. 

 

 

What will the website contain?

The website will contain –

  • Information about why ALL children need to see incidental representation of disability in the toy box.

 

  • Information about why 150 million disabled children need to see themselves and their experiences positively reflected in the toys they play with to grow up with positive self esteem.

 

  • Information about existing products and brands which include positive disability in the mainstream toy industry – here we can share all we have learnt and help parents source hard to find items. We won’t be selling, just telling.

 

  • Information about kitchen table businesses around the world who currently create bespoke toys for disabled children.

 

  • Industry advice and creative disability consultancy for toy brands wishing to include positive disability representation in their products, including disablity steotypes and how to avoid them. 

 

  • Information about our upcoming ‘Loved by #ToyLikeMe’ brand endorsement programme.

 

  • House user generatated content and unboxing videos. 

 

  • Educational resources for teachers wishing to cover #ToyLikeMe in their lessons. We’ve already made a Pearson’s A-Level textbook so we know teachers are interested in the debate raised by #ToyLikeMe. 

 

Why are we asking for financial support? 

#ToyLikeMe receives no funding and to date has been run voluntarily but unfortunately we cannot afford to self fund this project ourselves any longer and desperately need to employ some professional support to create a viable website. We’ve called in hundreds of favours from friends and business contacts in the 9 months since establishing #ToyLikeMe but now we have come to a bit of a cross roads. If we are going to carry on, we need to pull our heads out of the toy box and get some real funding behind us to build on what we’ve already created and keep it going to change the toy box for disabled children today and those yet to be born. We can’t change disability, we don’t want to, but we can change the world these kids are born into. 

Phew! Are you still reading? Thank you for staying with us. That was a long ol’ story. We hope you can help our fairy tale dreams come true! 

Love #ToyLikeMe 

 

Wheelchair User Athena Stevens Is #94dayswithoutawheelchair Thanks To British Airways

January 21, 2016

Same Difference has heard so many stories of airlines letting diabled customers down badly that we’ve lost count of them, and we’ll never use EasyJet again!

The latest such story comes from reader Athena Stevens who had a terrible experience with British Airways three months ago. As she explains in her blog post linked below, she has been without her wheelchair- and all that her wheelchair means to her- ever since.

Reader’s Email: Bristol CAB Researching People Being Sent Out-Of-Area For PIP Assessments

January 21, 2016

An email we received yesterday from reader Emily Hallett:

 

I volunteer with Bristol Citizen’s Advice in the research and campaigns department, and we’re currently looking at the problem of people being sent out-of-area for PIP assessments. At the moment I’m trying to get as many cases as possible so we have an idea of numbers and the places people are getting sent to. At the moment we’re hoping to write to Bristol MPs about the problem but we’ve also had some conversations with the DWP in Bristol as well.

I’m looking for:

* People who live in Bristol and who expected to have a PIP assessment with ATOS in Bristol, but who have been sent to other places (so far it’s been places like Taunton, Wells, Weston, Gloucester, Swindon etc.etc).
* People who have managed to get an appointment for a PIP assessment in Bristol within the last 6 months or so, either because they asked for an out-of-area one to be moved or because they were offered Bristol for their assessment.

All I need is for you to send me a quick message saying what happened. All your info will be confidential as we’re mostly just looking to work out numbers at this point. Also as we’re Bristol Citizen’s Advice you need to be Bristol-based.

Anyone who is willing to share their info can either comment on the blog post, or email me on emilymhallett@gmail.com

Thank you!
Emily

Hundreds Of Thousands Of ESA Support Group Claimants Are Missing Out On PIP And DLA

January 20, 2016

With many thanks to Benefits And Work.

 

Statistics released by the DWP following a freedom of information request show that almost 380,000 people who are in the support group of employment and support allowance (ESA) are not getting an award of personal independence payment (PIP) or disability living allowance (DLA). Six out of ten of these claimants have mental health conditions.

The rules for being awarded PIP are very different to those for being placed in the support group of ESA. Nevertheless, the criteria for ESA support group are strict and there is a considerable overlap between the two benefits.

In relation to mental health, ESA descriptors relating to problems with learning task, awareness of hazards, initiating actions, coping with change and social engagements and behaving appropriately would all be relevant to PIP and to DLA.

However, the difficulty of getting information and advice about eligibility for benefits as funding for the advice sector continues to fall means that many ESA claimants may not be aware of their potential eligibility for PIP.

You can download the full document from this link.

Latest DWP Stats Show That Fewer Claimants Are Being Awarded ESA

January 20, 2016

The DWP latest statistical release claims that the number of people getting an award of employment and support allowance (ESA) or incapacity benefit (IB) has begun to fall.

Figures released today show that claims reached a high of 2,533,220 in February 2015 but are estimated to have fallen to 2,495,000 by November 2015. Whilst a drop of 38,000 is a small one, well under 2%, the continuing fall in estimated numbers has been sustained for some months.

esa IB claims graph

The DWP do not attempt to give any explanation for why numbers are falling.

You can download the full document here.

MPs To Investigate ATOS, Capita And Maximus

January 20, 2016

With many thanks to Benefits And Work.

The Public Accounts Committee (PAC) is to investigate next month whether the taxpayer is getting value for money from the benefits assessments carried out by Atos, Capita and Maximus. There will be a televised session on 3 February.

The investigation into the cost personal independence payment (PIP) and employment and support allowance (ESA) medicals follows a damning report by the National Audit Office earlier this month which found that whilst the cost of assessments is rising, errors are huge and backlogs remain.

According to the PAC:

“Historically, assessment providers have struggled to meet expected performance levels. During 2013 and 2014 significant claim backlogs developed for both ESA and PIP, and there were concerns over the quality of assessments. The Department and providers agreed recovery plans and the Department transferred responsibility for ESA assessments from Atos Healthcare to a new provider, Maximus UK. Since March 2015, it has adopted a new contract structure and now pays more for assessments.

“This review considers whether the Department’s management of contracted-out health and disability assessments represents value for money. As the contracts covered are at different stages we examine how the Department has changed its approach to setting-up and managing contracts. The Department expects to significantly increase the number of assessments in the short-term and we consider how well the Department can address the associated risks.”

You can read more on the parliament.uk website.

327,379 sick and disabled people were not paid their Christmas Bonus at Christmas

January 20, 2016

Kitty S Jones's avatarPolitics and Insights

david-cameron-main.jpg

Benefits were originally calculated to meet only the basic costs of food, fuel and shelter. The Pensioners and Family Income Supplement Payments Act 1972 ensured that a Christmas Bonus of £10 is paid to the recipients of some benefits as a one off payment. The subsequent Pensioners’ Payments and Social Security Act of 1979 established the Bonus permanently, although the amount has never been uprated in line with rising prices and living costs. 

On thegovernment site, it says:

The Christmas Bonus is a one-off tax-free £10 payment made before Christmas, paid to people who get certain benefits in the qualifying week. This is normally the first full week of December.

You don’t need to claim – you should get paid automatically.

Labour’s shadow Work and Pensions Secretary Owen Smith has accused the Department for Work and Pensions (DWP) of being “cruel and incompetent” following an apparently widespread, national level…

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Disabled Woman Barred From Fred Olsen Cruise Ship Because She Can’t Get Out Of Her Wheelchair

January 19, 2016

Fred Olsen cruise bosses declined a booking from a disabled woman because she could not get out of her wheelchair to board the liner at Liverpool’s cruise terminal.

The refusal came when John Fisher, from Greasby, Wirral, attempted to book a place for himself and his disabled wife Ann on the Fred Olsen liner Boudicca for its seven-night Emerald Isle cruise, which departs from Liverpool on May 30.

But despite having booked cruises on the same liner on two previous occasions, the Fishers were told they could not go ahead with the booking this time because of Mrs Fisher’s disability.

Specifically, Fred Olsen said it had changed its passenger boarding policy. This meant that unless the passenger was able to get out of a wheelchair and get up the gangway steps without physical assistance, they could not travel.

John and Ann Fisher at the quayside in Bergen, Norway, on a previous holiday on the Boudicca in 2013.

Retired Liverpool University professor John Fisher said: “We were able to enjoy two Fred Olsen cruises from Liverpool in 2013 and 2014 aboard the Boudicca, occupying a wheelchair-adapted cabin.

“Access to and from the ship was easily accomplished with the help of four sturdy members of the crew lifting my wife’s wheelchair at the corners. Her chair is lightweight, as is she.

“But when the travel agent tried to make the booking this time, it was refused because it was no longer Fred Olsen’s policy to allow a passenger who cannot stand to be carried onto the ship in a wheelchair.”

Ann Fisher, who was left a tetraplegic following a spinal injury, said: “It’s quite devastating. I wouldn’t consider going on a cruise from another port because of the travelling involved.

The Fishers from Greasby, Wirral,are angry after Mrs Fisher,who is wheelchair bound, was told she could not board the Fred Olsen Cruise Liner Boudicca because of her condition.

“It was so easy when we did it before. We got a taxi to Liverpool, and were in our cabin just over an hour from leaving home. It was ideal for someone like me who finds it difficult to travel. Long journeys by car would be too much of an ordeal.”

A spokesperson for Fred Olsen said: “Regrettably, due to the non-availability of an overhead air bridge or a sloped gangway at the Port of Liverpool, we are restricted from assisting guests, who are fully confined to a wheelchair, to board our ships.

“Since we must rely upon the vessels own stepped gangway, the angle of which is subject to considerable tidal variation, Fred Olsen Cruise Lines requires guests disembarking or embarking in this port to be able to walk up or down this stepped gangway with minimal assistance from either a crew member or suitably able-bodied travelling companion.

“Fred Olsen is not able to carry wheelchair-reliant guests up or down the gangway, as this compromises the health and safety of both the guest and crew. We will continue to liaise with the Fishers until we can reach a satisfactory resolution.

Adam Pearson: Freak Show

January 19, 2016

I’ll definitely be watching this tonight at 9pm on BBC Three:

TV presenter and actor Adam Pearson has starred in a film alongside Scarlett Johansson and presented programmes, but how did he feel when he was asked to join a freak show?

Last year I received the weirdest job offer of my life. A famous American freak show got in touch to say they would love to work with me. Slightly taken aback I replied that while I was flattered, I had no skills that would in any way benefit the show – a statement that my family can quickly verify.

The only reason I had received the offer was because of how I look. I have neurofibromatosis, a genetic condition which means that non-cancerous tumours grow along my nerve endings. While these can grow anywhere, they have grown mainly on my face, causing severe disfigurement.

But months later while out for a drink with work colleagues I was asked whether or not I would do it. “It depends how much they paid me,” I replied. The idea for my next documentary was born.

The mere notion of freak shows made me feel very uncomfortable, my only knowledge of them stems back to the old Victorian days of exploitation, men and women with various deformities and genetic anomalies being paraded around for the masses to jeer at.

Elephant Man – the name given to Joseph Merrick – was the moniker that haunted my childhood. It was a name that was continuously hurled at me in the school playground and as a result I have always avoided watching the David Lynch film of the same name and wouldn’t even talk about Mr Merrick. It is safe to say our relationship was dysfunctional.

But I was about to go on a journey to America to meet some modern day “freaks” and if this journey was going to hold any merit or meaning I needed to face my fears, I needed to meet the Elephant Man.

I went to the Royal London Hospital and joined the exclusive list of people who have seen Joseph Merrick’s skeleton close up. The feeling of meeting a man who predates your existence by 150 years, but who you have avoided for so long is bizarrely therapeutic. Later, that same evening, I went home and finally sat down, took a deep breath, and watched The Elephant Man on DVD. To my great surprise I found myself utterly enthralled by the story.

A few days later I boarded a plane set for Michigan, on my way to meet a lady called Bethany who was about to travel to Texas to make her freak show debut with the 999 Eyes Freakshow. Bethany has ectrodactyly, more commonly known as Lobster Claw Syndrome, and had her leg amputated at the age of three. I had dinner with her and her family and discussed her motivations for joining. She described 999 Eyes as a “freaky family”, a place where the unique are celebrated. While her family shared the same concerns that I had – that she might be being exploited – they were none the less supportive.

I travelled with Bethany to meet the rest of the 999 Eyes Freakshow. The most bizarre thing by far about meeting them was that a lot of people assumed I already worked there.

As soon as she saw me, Samantha X – owner and operator – ran straight up and hugged me, introducing me to the rest of the performers. I spoke to Black Scorpion – who also has Ectrodactyly – a man who is very much the heart and soul of the 999 Eyes. He described how performing in freak shows had changed his life. Growing up, he felt like an outsider who didn’t have a voice but the freak show gave him both a place to belong and a voice to tell his story.

As I left Texas I felt slightly more at ease about the idea, but I still had my doubts.

Having dipped my toe into the world of freak shows it was time to go big – so I travelled to Las Vegas on Halloween. I hate Halloween. It’s the one night of the year I can guarantee people are going to talk crap to me.

I met Jake, a little person who is a freak show performer and who also runs a wrestling company called Midgets Unleashed. I asked him if I would fit in in Vegas. He instantly replied that I could make a lot of money, just by having my picture taken. So that night I put his theory to the test. As things turned out I was a complete and utter rock star. In little under half an hour I had my photo taken at least 20 times and made $18 (£12) in tips. I was beginning to think maybe there is a career in this for me.

I flew to Mexico City to meet Jesus “Chuy” Aceves who’s known on stage as Wolf Boy. Chuy has a rare genetic condition called hypertrichosis, causing thick hair to grow on his face. Of the 80 known cases in the world he and his family account for 30 of them. His experience of freak shows is much darker than Black Scorpion’s. He joined the circus as a teenager and was badly mistreated, to the point where despite being a headline act all over the world, he has turned his back on freak shows for a quiet life with his family and now works on a rubbish tip.

Throughout my journey I had begun to wonder: Is reality TV the new face of freak shows? Back in America, in Maryland, I met the Hamills, a family of five little people who star in their own TLC series Our Little Family. I met them at their family home and after an exhausting time spent playing with their son Jack and twins Cece and Cate, I sat down with Dan and Michelle, who have a form of dwarfism called achondroplasia. Their motivations for doing the programmes are to raise awareness of their condition, something that I totally identify with. “We try and be entertaining,” Dan told me.

They also get the same kind of mistreatment I get in the UK – people staring and taking photos. When people call them “midgets” it strikes a particularly sour note with Michelle. “It’s a derogatory term for little people,” she says. I left Maryland in two minds, having come to America to learn about freak shows could it, in fact, be possible that I’ve actually been performing in them all along?

There comes a point when you’ve done your research and you need to make a decision. I touched down in New York City to meet Mat Fraser. Of all the “freak” performers on the planet he is one who has made it big. He shot to fame when he landed a role in American Horror Story series four and also is renowned for his risque stage shows.

“You need to come to terms with your face,” he told me outside a New York bar. “As far as freak shows go you are the modern day Elephant Man.” He also told me that if I got on stage it was highly likely I’d get sex. The gauntlet had been thrown down, and after coming all this way and meeting the performers it was time to act.

I returned to London to either break out the freak closet and take to the stage or remain in the shadow of The Elephant Man. After much contemplation I came to the conclusion that to go all that way, meet all those people and do absolutely nothing in response was to have been a waste of time. I was hitting the stage.

I developed a script that told the real story of The Elephant Man but also told the story of my journey into the world of freak shows. So on a November evening I took to the stage at the Vauxhall Theatre Tavern in front of a room full of strangers and made my official freak show debut. I was really pleased with the performance and thoroughly enjoyed myself. Regrettably, Mat’s promise of sex didn’t quite work out for me.

Will I be selling everything I own, jacking in my TV career and running off to join the circus? Probably not. But I am no longer living in the shadow of the Elephant Man and if the gentleman that asked me to join the freak show is reading this, please call me – let’s do business.

Adam Pearson: Freak Show is on 19 January at 21:00 on BBC Three.

New Legal Judgement Denies PIP To Those Facing ‘Overwhelming Psychological Distress’

January 19, 2016

With many thanks to Disability Rights UK:

An important legal judgment has been issued that will likely deny an award of the Personal Independence Payment mobility component to disabled people, with conditions such as depression, panic attacks or anxiety.

The upper tribunal appeal decision – UK/313/2015 – holds that the PIP descriptor “Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid” concerns only the ability of a disabled person to navigate in terms of following a route.

This descriptor attracts 10 points under the PIP assessment point’s scheme and so leads on its own to an award of the standard mobility component (worth £55.10 per week).

The new judgment overturns a previous decision – CSPIP/109/2015 – that allowed that where someone is so prone to anxiety they need accompanying they may qualify for one of the “planning and following a journey” PIP mobility components.

As a result of this new decision, someone who needs to be accompanied on a journey due to anxiety or panic will be held to meet instead only the PIP descriptor “Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant” which attracts just four points and does not lead to an award of the PIP mobility component.

Disability Rights UK is dismayed at this extremely disappointing decision. Its effect will mean that those disabled people who are accompanied out of doors due to mental health issues such as anxiety or panic attacks will be denied any rate of PIP to compensate them for the extra costs this may bring.

The new judgment means that those DLA claimants who receive the lower rate of its mobility component due to a need for supervision will not successfully migrate to the mobility component of PIP.

New figures revealed to BBC Radio 1’s Newsbeat show people with learning disabilities feel isolated and lonely

January 19, 2016

A press release published with many thanks to BBC Radio 1’s Newsbeat:

Exclusive figures revealed to BBC Radio 1’s Newsbeat from charity Mencap suggests hundreds of thousands of people with learning disabilities are being left isolated and lonely because of attitudes towards them.

The charity spoke to 338 people aged 18 to 35 and its research found nearly half want to spend more time outside their homes. A similar number told Mencap they don’t go out with friends as much as they really want to.

The research also revealed around a third spend less than one hour a day outside their homes on a typical Saturday. Nearly 34% were worried about being bullied and more than a quarter are worried about being laughed at when they leave the house.

The charity says “some will face barriers in terms of people’s attitudes”.

Rossanna Trudgian is Head of Campaigns at the charity and says a lack of job opportunities creates barriers for many. “Some people with a learning disability won’t even have the chance to leave home. That’s because of high unemployment rates with a learning disability. We know that only 6% of people have a paid job and that means they don’t have the independence that a job can provide.”

Vijay Patel, 27, told Newsbeat he gets lonely because of his learning disability. “I do get cut off, because people like me, we are not able to get out a lot. If you are stuck at home, there is nothing you can do and you can get bored, I feel disappointed. I want to get out there and do something, I want to get a job and hopefully I will be happy.”

Newsbeat spoke to 21-year-old Michelle about her life with a learning disability. “I get nervous when I don’t know which places to go. I got put off going out because I had an incident once on the bus. There was a lot of noise from the school kids, one of them actually upset me and made me cry. I felt like I didn’t get my opinion across and I have just quit college because I didn’t feel like I could go back. Some people don’t know that people with a learning disability suffer that much and can’t go out. People don’t realise that there are people out there with a learning disability.”

The survey also explored issues of isolation for young people with a learning disability, finding that;

o   30.1% spent less than 1 hour outside their homes on a Saturday.

o   49.3% would like to spend more time outside their house.

o   44.6% do not think they spend enough time with friends.

o   17.8% feel alone and cut off from other people.

o   33.7% were worried about being bullied and 25.7% worried about being laughed at when leaving the house.

IDS Calls For Another Major ESA Shakeup

January 18, 2016

A crackdown on the sick pay culture which costs Britain billions of pounds a year is being ordered by Iain Duncan Smith.

The Work and Pensions Secretary is particularly keen to slash the numbers off work with anxiety and depression.

In what is expected to be the biggest welfare reform of this Parliament, he will call for the shake-up of the ‘fundamentally flawed’ Employment and Support Allowance. Currently the 2.3million claimants on ESA are either assessed as being fit to work or signed off altogether.

A crackdown on the sick pay culture which costs Britain billions of pounds a year is being ordered by Iain Duncan Smith

But under a policy document to be unveiled within weeks, they will instead be tested for what they are able to do – not what they cannot.

They will then be found work for around ten hours a week, or whatever is possible, to get them back into the workplace – reducing the £14.2billion sickness benefits bill in the process. Those who repeatedly refuse could have their support cut.

The move is expected to put ministers on a collision course with disability campaigners, who claim the sick are already put under too much pressure to return to work.

But Mr Duncan Smith argues his plans are about helping the disabled and delivering ‘social justice’.

‘The sickness benefit culture in this country is in dire need of reform,’ he said. ‘Getting people into work is more than just earning a salary and certainly more than balancing the public purse. For culturally and socially, work is the spine that runs through a stable society. I want those who remain trapped and isolated on welfare to move from dependence to independence.’

Official figures reveal that while the number of claimants on unemployment benefits is down by almost 700,000 since 2010, the overall number on sickness benefits fell by just 88,000 during the same period.

Under the new test Mr Duncan Smith is particularly keen to target those signed off work with conditions related to their mental health. Almost half of ESA claimants have a mental or behavioural disorder as their primary condition, often ‘depression or anxiety’, according to officials.

To qualify for ESA – worth up to £102.15 a week – claimants must undergo a ‘work capability assessment’ to establish if they are able to return to employment immediately. Those who are not are divided into two groups – the severely disabled who will never be able to work, and those who are judged to be capable of work with the right support.

But Mr Duncan Smith said the test is too ‘binary’, adding: ‘It is a system that decides that you are either capable of work or you are not.

‘Two absolutes equating to one perverse incentive – a person has to be incapable of all work or available for all work.

‘In the world beyond ESA, things are rarely that simplistic. Someone may be able to do some work for some hours, days or weeks, but not what they were doing previously.’

The new test will focus on establishing what an individual might be able to do, although inevitably some claimants will still be judged unable to work at all. Those deemed capable of some types of work will then be required to look for employment, or risk losing some of their benefits.

Firms will also be encouraged to do more to prevent staff taking long-term sick leave, and to help them back into work after illness. GPs will be called on to refer the long-term sick to back-to-work programmes.

ESA was introduced in the final years of the last Labour government. Ministers thought it would be a short-term benefit, and forecast that the number claiming it would drop by a million after a decade.

Last week it emerged that a new drive is to be launched to help those with severe addictions, such as drink and drug problems, into work after it was revealed that they are costing taxpayers up to £10billion a year.

Under the Universal Support scheme, job centres will identify the addictions which are stopping some claimants finding work.

Once claimants have found employment, they will remain under the care of a job centre until they are doing sufficient hours to leave the Universal Credit benefits regime.

MPs Demand Better Protection For Disabled Claimants On DLA/PIP Who Claim DHPs

January 18, 2016

From the latest Disability Rights UK Newsletter:

 

This report examines local authority provision under the local welfare safety net, defined as:

  • Council Tax support
  • Discretionary Housing Payments
  • Local welfare assistance schemes

With regard to Discretionary Housing Payments the report says

“7. It was not the Government’s intention that the removal of the social sector spare room subsidy or the Benefit Cap should penalise disabled people and their carers. We believe that, in cases where these people cannot reasonably be expected to work or earn more, or be helped to move to cheaper accommodation, they must either be suitably protected from unintended effects by DHPs or exempted from the reforms. (Paragraph 54)

8. We recommend that the Government put on to a statutory footing guidance which makes clear that local authorities must not take into account DLA/PIP awards in their calculations of applicants’ income in relation to DHP award decisions without also taking into account the extra costs incurred by the applicant as a result of their disability. The guidance must also prohibit local authorities from requiring DHP applicants to demonstrate that they have actively sought to move to cheaper accommodation in cases where the applicant in question is disabled and lives in a specially adapted home. (Paragraph 55)

9. We recommend that parents or guardians who care full-time for their adult disabled children, who are in receipt of DLA/PIP and consequently not considered part of the same household for benefit purposes, be exempted from the Benefit Cap. We further recommend that the DWP conduct research—to be completed within six months—into the characteristics of people affected by the Benefit Cap and the removal of the spare room subsidy whose options to remedy the effects—i.e. working more or moving home—are severely limited. It was not the Government’s intention to affect such people and time-limited DHPs are clearly inadequate to protect them. (Paragraph 56)”

 

– See more at: http://www.disabilityrightsuk.org/news/2016/january/mps-demand-better-protection-disabled-claimants-dlapip-who-claim-dhps#sthash.UimVmhyC.dpuf

Research Project: Disabled Women And Domestic Violence

January 18, 2016

From the latest Disability Rights UK Newsletter:

Research project: Disabled women and domestic violence:  A disabled PhD researcher from the University of Bristol is looking for participants to share their experiences with her. The project is about the lived experiences of Disabled women who, as survivors of domestic violence, have sought help from the justice system. Are you (or do you know) a Disabled woman who is 18 or older, a survivor of domestic violence and sought help from the justice system because of this abuse? The researcher is looking to connect with women living in South West England or the Greater London region. For more information about the project or to participate in it, please contact her directly by email: maria.orchard@bristol.ac.uk.

Breakthrough Cancer Treatment For MS

January 18, 2016

Doctors in Sheffield say patients with multiple sclerosis (MS) are showing “remarkable” improvements after receiving a treatment usually associated with cancer.

Steven Storey was diagnosed with MS in 2013 and within a year went from being an able-bodied athlete to needing a wheelchair and losing sensation in much of his body.

He said: “I went from running marathons to needing 24-hour acute care. At one point I couldn’t even hold a spoon and feed myself.”

Within a few days of the transplant he was able to move his toes, and after four months could stand unaided.

He still needs to use a wheelchair but can manage short distances without any support.

Steven, who is continuing to undergo physiotherapy said: “I can swim and cycle and hopefully walking is the next big step”.

The BBC’s medical correspondent Fergus Walsh reports.

Panorama: Can You Stop My Multiple Sclerosis? Monday 11 January, 8.30pm, BBC One.

Call The Midwife Series 5: Episode 1- Thalidomide

January 18, 2016

As regular readers may know, I have loved Call The Midwife since it began. I am pleased that they often cover disability storylines in great detail and with great sensitivity.

The first episode of Series 5 was no exception. As I predicted at the end of Series 4, the episode covered Thalidomide.

Easter approaches, and for the nuns and midwives of Nonnatus House it’s as busy as ever as babies are born to myriad families across the borough. One such delivery brings with it its own set of shocks, as Patsy helps experienced mother Rhoda Mullucks give birth to a baby with severe deformities, with no clear explanation. As the mother refuses to reject her new-born child, the father struggles to come to terms with the harsh realities of his daughter’s problems. Support and intervention from Sister Mary Cynthia, Dr Turner and Shelagh proves invaluable as they try to rebuild this loving family.

Meanwhile, the new exercise craze has reached Poplar, led by Nonnatus’ very own Trixie. As she begins teaching a keep-fit class, she’s surprised when the exercises lead to a medical emergency for one of her group. The experience leads her to realise that women sometimes lack a basic understanding of their own bodies, and she aims to rectify it, one patient at a time.

If you missed it, it is available on Iplayer here for a month.

 

If even the DWP isn’t Disability Confident, how will a million disabled people get jobs? – Bernadette Meaden

January 18, 2016

Kitty S Jones's avatarPolitics and Insights

Ren? Magritte, Golconde, 1953, Restored by Shimon D. Yanowitz, 2009  øðä îàâøéè, âåì÷åðã, 1953, øñèåøöéä ò"é ùîòåï éðåáéõ, 2009                          Golconda – René Magritte

Nobody would expect a person who suffers blackouts to drive a bus or bin waggon once they had thought through the potentially devastating consequences. But political, cultural, psychological and financial coercion is being used to force people sick and disabled people to work – the government continues to cut welfare, which was calculated originally to cover only the costs of meeting basic needs.

Cruel sanctions and strict, inflexible, often unreasonable behavioural conditions are being imposed on lifeline benefit receipt, adversely affecting some of our poorest and most vulnerable citizens; unemployed and disabled people are stigmatised in the media – all of this is done with an utterly callous disregard of a person’s capacity to work, and importantly, the availabilty of appropriate and suitable employment opportunities, and this can have

tragic consequences.
Modern employment practices,which have an increasingly strong focus on attendance micromanagement,

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PIP Assessment; Traffic could cost your award

January 18, 2016

jaynel62's avatarjaynelinney

Steve, a fellow campaigner was asked to support a PIP claimant who had been instructed by the DWP to attend an assessment in Walsall despite living in Birmingham; Steve raised this with his MP, the subsequent correspondence regarding is below:

Subject: Capita Assessment Centres
 Date: Thu, 8 Oct 2015 08:23:02 +0100
 To: richard.burden.mp@parliament.uk

Mr Burden,

 I have been made aware that people are being asked to travel from Birmingham all the way to Walsall for their PIP medical assessment.
As you can fully appreciate some of these people have severe mobility issues as well as mental health issues and the distance they are being asked to travel will have a profound affect on the health.
 Could you please ask the minister for the disabled Rt Hon Justin Tomlinson to look into this further.

A rather interesting response was received

As part of the specification for the PIP assessment service, Assessment…

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They Are Coming For Our Kids! Jobcentre Harassment To Start From 12 Years Old.

January 15, 2016

johnny void's avatarthe void

ids-dead-teddySchool-children as young as 12 are to face Jobcentre harassment coercing them to join unpaid work schemes when they leave education the DWP have announced today.

Jobcentres busy-bodies are to be sent out into schools in a chilling move that  Iain Duncan Smith has pledged  will have a ‘dramatic’ impact on the nation’s children and encourage social mobility.  Yet this, of course, is a bare-faced lie.  There is no mention of going to college, university, or even starting a real job in today’s gushing DWP press release announcing the scheme.  Instead children will be encouraged into unpaid Work Experience, unpaid traineeships, or poverty paid so-called Apprenticeships which are little more than an excuse for companies like McDonalds to dodge paying young people the minimum wage.  This is nothing more than a shabby attempt to indoctrinate young people into accepting the life of low paid, insecure, shitty jobs – or…

View original post 398 more words

#TheWorld’sBiggestSelfie For Multiple Sclerosis

January 15, 2016

The World’s Biggest Selfie is a fun, easy, online fundraising campaign which Same Difference has been asked to publicise.

 

The information below is taken from the About section of their website.

 

#TheWorldsBiggestSelfie is a fun way to raise money for a great charity.

Every photo will fund the latest international research into new treatments for multiple sclerosis and change the lives of people living with the disease now.

Together we can Kiss Goodbye to MS.

My Aims:
1. 1,000,000 selfies uploaded in 30 days.
2. Raise global awareness of Multiple Sclerosis.
3. Help us all to try and Kiss Goodbye to MS.
4. See numbers 1, 2 & 3.

I challenge you to take and upload the most exciting, creative, original, outrageously funny, serious or weird selfie you can. Then challenge your friends to see if they can upload a funnier one.

Who can take the best selfie?

We can all help to change the lives of people with MS, and together we can make #TheWorldsBiggestSelfie.

Thank you,
George

Multiple Sclerosis is a cause close to our hearts. We will be participating and we urge you to join us and join in the fun!

Not Dead Yet UK Campaigner Kevin Fitzpatrick Dies

January 15, 2016

My thoughts are with all who shared more with Kevin than a Facebook group. RIP.

 

https://www.facebook.com/groups/233048330220108/permalink/476404619217810/

Thalidomide Survivor Has High Hopes For Call The Midwife Storyline

January 15, 2016

Like millions of proud new mums, Mena Moriarty was brimming with excitement as she took baby Rosie on their first trip to the shops together.

But she was reminded in the cruellest way that her daughter, who was born with no limbs as a result of her mother taking thalidomide, wasn’t like other babies.

 After trundling her pram to the local high street, 18-year-old Mena was approached by a woman who spotted Rosie’s cute face beaming out from under the covers.

“She said: ‘Oh what a beautiful baby!’” says Rosie. “Then she pulled my blanket back and saw just two fingers coming out of each shoulder.

“Then she said: ‘Oh my God it’s a freak!’ and went screaming up the road. My mother was devastated.

“It had taken a lot of courage for her to take me out.

“And this made her wonder: ‘How am I going to cope if that’s the reaction I get every time I go out?’”

The Moriartys were just one of hundreds of families across Britain who endured years of heartache as a result of the dreaded drug’s legacy.

Now the new series of Call the Midwife , which starts on Sunday, will shine new light on this dark chapter of British history – the first time the issue has been tackled in a TV drama.

Producers are using Rosie’s biography, Four Fingers and Thirteen Toes, as inspiration after she wrote to demand the BBC drama tackled the subject.

There’s now hope the resulting thalidomide storyline will help those affected by the sinister sedative as they fight for recognition and compensation.

The pill, used to treat an array of ailments, was first prescribed in the UK in April, 1958.

As a result of it being used by pregnant mothers, usually for sleeplessness and morning sickness, over four years 2,000 British babies were born with a range of disabilities .

Around the world, it affected at least 20,000 infants. But, after considering the number of global miscarriages caused by the drug, that number could be as high as 100,000.

It was the worst man-made peacetime disaster in history. Far worse than 9/11, the sinking of the Titanic, or even Chernobyl.

Babies affected by thalidomide

2,000

In Britain

20,000

Worldwide

100,000

Worldwide including miscarriages

Yet the drug’s licence wasn’t withdrawn until December 1961 when doctors spotted the link between the “safe wonderdrug” and the spate of physical abnormalities.

And the British government only informed doctors to stop using thalidomide in May 1962.

For those impaired by thalidomide, their greatest hurdle was the ignorance and prejudice they faced.

“There have been so many awful moments growing up,” says Rosie, 55, who lives in Cardiff.

“I remember going out with mates to a nightclub and being told: ‘You can’t come in because you’re a fire risk.’ They just wouldn’t have wanted a disabled person in there.

“Nightclubs, in particular, are about the body beautiful. They want people who are going to dance together, snog together and have lots of drinks.

“What they wouldn’t want, for fear of upsetting the other punters, is someone who doesn’t fit that mould.

“I was in my teens and if you get a spot on the end of your nose you think it’s the end of the world.

“Combine that with having no arms and legs and some idiot telling you you can’t come into a nightclub, it takes an awful lot of personality to overcome those kinds of things.”

Rosie was born with phocomelia, which means she has no arms but two fingers on each shoulder. She also has shortened legs with two small feet carrying a total of 13 toes.

Though her impairment was more severe than other babies affected by the drug, she became resilient thanks to her parents’ love.

Many mums and dads with thalidomide impaired children were encouraged to leave them to be cared for in institutions and “start again”.

Rosie’s mother and her father, Denis, considered taking her to a local orphanage.

“But they only got as far as the gates before turning back,” she says, “and that was the luckiest day of my life.

“You’d have to be naive not to know what happened in homes for children and orphanages, the amount of abuse that a lot of people experienced in such places.

“Thalidomide-impaired people I’ve spoken to in these institutions lacked that support and contact from another human being. They described them as cold and unloving.”

But even outside the institutions, many thalidomide survivors have struggled without the support which Rosie enjoyed.

“They haven’t been able to cope with being disabled,” she says. “Some have turned to drink, some to drugs, while others have had difficulty forming relationships.”

Rosie was fortunate. Her parents didn’t just keep her, they adored her.

Crucially they refused to hide their daughter. But that didn’t diminish the trauma her mother felt.

She’d taken thalidomide for just two weeks to deal with her asthma, high blood pressure, a lack of sleep and morning sickness.

Mena realised the drug was the cause of her daughter’s disabilities and, like most mothers in her situation, was haunted by the guilt.

“I remember my mum had seen a couple of things in a shop window which might suit me,” she says, “but when we went in the owner of the shop came over screaming at us: ‘get out of the shop, your pram is ruining my new carpet!’

“And I said: ‘This isn’t a pram, this is my wheelchair, it’s my way of getting around’. But she wasn’t having it, so I said: ‘Well, we were going to buy something but you can stick it now.’

“Both my mum and I went outside and burst into tears. Mine were tears of anger but hers were tears of heartbreak. She felt bad because I was being hurt.”

But the family also knew that Rosie was lucky to be alive. Some of the most deformed babies born in the UK were “not allowed to live.”

Doctors suffocated them or left them in a cold room shortly after delivery.

Of those allowed to live, half didn’t survive a year.

Couple With Cerebral Palsy Become Parents

January 14, 2016

A story that made me smile… a rapper with CP and his childhood sweetheart have had a baby girl.

DWP Sacks Disability Benefits Worker With Terminal Cancer- For Taking Too Much Sick Leave

January 13, 2016

A woman claims she was sacked from her job at a disability benefits centre for taking too much time off – while receiving treatment for incurable cancer.

Pauline Fisher, 65, found out days before Christmas that Department of Work and Pensions (DWP) bosses had rejected an appeal against a decision to sack her.

She had been signed off sick since June from the job she’s held for the past decade.

Pauline, who has been diagnosed with an incurable cancer , was adamant she would be fit again to work following her chemotherapy treatment.

But management at the Warbreck House office in Blackpool, Lancs., said they had made efforts to make suitable arrangements for her to come back and wrote to her saying she had “failed to maintain an acceptable level of attendance”.

Pauline says she qualified for full sick pay for the six months after she was signed off by a doctor in August, having first been sent home in June.

The same month she was diagnosed with clear cell renal carcinoma – a rare cancer – in her left kidney. The disease has since spread to her lungs and liver.

She began chemotherapy in August to prolong her life, but has been largely confined to a wheelchair since then.

On November 5 she was notified that she had been sacked from her job despite her sick note running up until the end of this month.

Pauline, who took partial retirement in March 2014 dropping her hours to work just four days a week, said: “When they dismissed me on November 5, they gave me 10 weeks’ notice pay – normally you get compensation but because I’m of retirement age I’m not entitled to that.

”I would have loved to have gone back to work. It’s a nice place to work. I would have just cut my hours down a bit.

”I’m not doing this for any money. I’m doing it because I’m so angry and want them to take it on board so they don’t treat anybody else the same.

”I’m so angry. From the neck up I’m absolutely fine – it’s the rest of me that’s rotten.”

SWNS Pauline Fisher who has been sacked from her job at the DWP despite having a doctor's note for terminal cancer.
Letter: They claimed she had taken too much sick leave

In the letter dated November 2, she was told: “You have now been absent from work due to your illness since June 19, 2015.

“You are currently being cared for by your daughter due to your fatigue and dizzy spells.

“Since taking your medication you have seen little improvement in your ability to care for yourself.”

The letter also said Pauline told management at a meeting in October that she was “still unfit for work”.

It added: “Although you aspire to return to work as soon as possible, it is clear from the information provided there is no clear indication that you will be able to return to work in the foreseeable future due to ongoing care and medical treatment.”

Bosses also said she had received “substantial support” to boost her attendance.

It concludes: “Your employment with DWP must be terminated because you have failed to maintain an acceptable level of attendance and are unable to return to work within a timetable that I consider reasonable.”

Her daughter, Jodie Fisher, 26, who cares for her mum at their home in Mereside, near Blackpool, said: “lt’s disgusting, after 10 years of service to them.

“It’s not as if she’s got a migraine – she’s dying. I am fuming, so angry it’s unbelievable.

“They can’t operate on the kidney itself. She wouldn’t make it off the operating table.

“The are just giving her chemotherapy to prolong her life.”

The family say on December 23 they were told they weren’t unable to appeal the decision as they didn’t have enough information.

A DWP spokesman said: “We do all we can to support an employee’s return to work, including offering part-time, flexible hours or a different role.

”If someone tells us they won’t be able to return to work for the foreseeable future, we do need to make plans to ensure we can continue to deliver government services.”

World’s First Ultra Accessible Splash Park To Open In Texas

January 13, 2016

A press release:

Morgan’s Inspiration Island, the world’s first ultra-accessible splash park has recently broke grounds in San Antonio, Texas, as part of Morgan’s Wonderland, a 25 acres accessible amusement park for children and adults with special cognitive and physical needs. The park is due for completion in Spring 2017.

The Gordon Hartman Family Foundation has for the past two years been working with water park consultants from Texas, Arizona, Florida and even Canada as well as local doctors and special-needs therapists to design a tropically themed paradise inspired by company CEO Gordon Hartman’s 22-year-old daughter, Morgan, who deals with both cognitive and physical challenges.

Morgan’s Inspiration Island – like Morgan’s Wonderland – will concentrate on inclusion and inspire guests with special needs to do things previously thought to be impossible.  Those without disabilities and those with, including individuals in wheelchairs and guests with hearing and visual impairments, will be able to play alongside each other and gain a greater understanding of each other.

The River Boat Adventure ride will twist and turn more than an eighth of a mile through a jungle setting with bird and animal sounds in the background.  Five water play areas – Hang 10 Harbor, Rainbow Reef, Shipwreck Island, Castaway Bay and Calypso Cove – will offer a variety of splashy elements such as raintrees, falls, pools, geysers, jets, water cannons and tipping buckets.  Just like Morgan’s Wonderland, every element will be wheelchair-accessible, and waterproof wristbands with RFID technology will be available so parents can go to a Location Station and easily ascertain the whereabouts of their children and other members of their party.

The park planners are working with university researchers to develop special waterproof wheelchairs so that guests in expensive motorized wheelchairs don’t get them wet. They are planning on having special Morgan’s Inspiration Island wheelchairs available along with spacious private areas where guests can be lifted out of their wheelchairs into our waterproof wheelchairs.

The splash park has been designed with water conservation in mind.  Water used in the various play elements will be continuously filtered and recirculated, and it will be stored in huge underground tanks when the park is not in operation.

The latest information on Morgan’s Wonderland admissions, operating days/hours of operation and special events/celebrations can be found at www.MorgansWonderland.com.  The 25-acre theme park is located at 5223 David Edwards Drive in Northeast San Antonio a half-mile west of IH 35 at the intersection of Wurzbach Parkway and Thousand Oaks Drive.

Featuring more than 25 wheelchair-accessible attractions including rides, playgrounds and gardens, Morgan’s Wonderland is the centre of a family fun destination known as Wonderland, Texas.  The destination also includes Toyota Field, the 8,000-seat home of the San Antonio Scorpions pro soccer team; the STAR Soccer Complex for tournament and league play; and The Academy at Morgan’s Wonderland (www.MorgansWonderland.academy).

The newest addition to Wonderland, Texas is the CRIT (Children’s Rehabilitation Institute of TeletónUSA), which serves children with neuromusculo skeletal disabilities ages 18 and younger.  Go to www.CRITUSA.org  for more details.

For information on Texas go to www.traveltex.com

Sample packages available upon request

Some Thoughts On Simon Watson- Private Sperm Donor

January 13, 2016

Today’s Victoria Derbyshire programme had a very interesting feature. A report by Simon Watson, a man who claims to have fathered around 800 children who live all over the world. He is a private sperm donor who says he meets his clients online.

The programme had a long and detailed discussion on the risks of private sperm donation.

The risks are many. Due to the number of half siblings these children have, these can be anything from the possibility of future incest to mental health issues if their mothers choose to reveal to them how they were conceived.

For me personally, the feature raised many questions, most of them about Simon Watson himself. He has three children by an ex wife and says he has shown them pictures of their ‘half siblings.’ His son even tracks the women he meets online. His son looks over 18, but still, I find this deeply worrying and certainly wouldn’t want to know if my parent had 800 children that they openly claimed not to care either way about! I think the thought of having siblings that my parent/s didn’t care about, when they cared about me, would affect my mental health quite badly. Does that worry Simon Watson?

Simon Watson says he wants to father over 1000 children and break a world record. The question was raised about whether this is just a ‘numbers game’ to him. Of course, parenthood should never be a ‘numbers game.’

However, more worryingly to me personally, Simon Watson kept talking about how he is glad that he doesn’t have any genetic diseases. A more worrying question was raised- does he want to spread his genes to so many women because there is nothing wrong with him?

Of course, for women wanting a sperm donor, a lack of known genetic diseases in their sperm donor is always a very positive thing.

However, the way Simon Watson was talking about this made me wonder about his attitudes to disability. When he was asked if there was anyone he wouldn’t donate to, he said someone who seemed too ‘nuts.’ He says he often donates to women in same-sex couples and seems to have no problem with this.

However- and let me make very clear that I certainly don’t mean myself- I couldn’t help wondering whether he would donate to a physically disabled woman or couple?

Or how would he feel if a woman contacted him to say that one of ‘his’ children had a disability that is not usually genetic, like Cerebral Palsy or Multiple Sclerosis?

I don’t want to ask him on Facebook, in case he thinks I want his help for myself. All good luck to those who do but I certainly don’t!

Simon Watson seems to know nothing about unconditional love. The love between a ‘real’ parent and their children is not lessened if their child has a disability, genetic or otherwise. And the love between siblings brought up together is an unconditional, unbreakable, irreplaceable bond.

The thought that 800 children are missing out on that makes me very sad. So I’ll find children- and partners- the old-fashioned way, thank you very much!

 

Acid Attack Survivor Laxmi Saa Is New Face Of Indian Fashion Brand

January 13, 2016

An Indian fashion retail brand has signed up prominent acid attack survivor and campaigner Laxmi Saa to be the face of its new range of designer outfits for women, in a campaign they are calling “Face of Courage”.

Ms Saa was 15 when a 32-year-old man threw acid at her for rejecting his offer of marriage.

“It felt cold first. Then I felt an intense burning. Then the liquid melted my skin,” she remembers about the attack.

Since then, she has become one of India’s most outspoken advocates against the unregulated sale of acid, as well as for harsher punishment for the perpetrators of acid attacks.

“This opportunity to represent an apparel brand was a platform for me to set an example for women like me to be confident and have courage despite their physical appearances. This was also a platform for me to send a clear message to criminals that women will not lose courage even after they are attacked with acid to destroy their physical beauty,” Ms Saa told the BBC.

According to one estimate by the Acid Survivors Trust International, there could be as many as 1,000 acid attacks every year in India alone, many of which go unreported.

Despite this, the country does not have any specific law to prosecute acid attackers.

However in 2013, the Supreme Court of India acted on a petition filed by Ms Saa and directed state governments to formulate a policy to regulate over-the-counter sale of acid in India.

The apparel company Viva N Diva, for which Ms Saa is modelling, said it chose her out of a desire to change the outlook of people towards fashion and beauty by spreading awareness that beauty is beyond mere physical attributes.

Ms Saa agrees that there need to be wider conversations on the issue.

“The problem is not just in being a victim but also your victimisation by the society. We are treated as if we are good for nothing and as if our lives are a waste,” she said.

Co-founder of Viva N Diva, Rupesh Jhawar, told the BBC that the idea for the campaign with Ms Saa came after he saw a calendar featuring acid attack survivors.

“To my eyes that are used to seeing fashion models with flawless skins dolled up in front of the cameras everyday, this view was both disturbing and inspiring.

“For a moment I had seen beauty in a very different way and we wanted to capture it – remove any speck of being a victim from those eyes and give them a stage, an employment, a platform, a medium to flaunt it with style.”


Disabled Model Asa Marshal Hopes Surgery Will Help Mobility

January 13, 2016

A model who has cerebral palsy and dystonia is to have surgery for the first time to help ease some of the involuntary movement associated with the condition.

Asa Marshal, a 27-year-old British Pakistani, hopes the deep brain stimulation will reduce the pain she suffers.

She describes disability as a “speed bump” which will not stop her living life to the full.

BBC Asian Network’s Anisa Kadri reports.

Cancer Patient Lost Her ESA For A Month During Chemotherapy

January 13, 2016

A cancer patient was stripped of her benefits for more than a month while undergoing debilitating chemotherapy following an apparent mix up.

Marisa Da Silva, of Isleworth, was diagnosed in August 2015 with breast cancer and has been unable to work since her treatment began the following month.

The 39-year-old was initially awarded Employment and Support Allowance (ESA), thanks to help from Macmillan Cancer Support to obtain the benefit.

But this payment was withdrawn in November and she says she was told she would need to apply for work to qualify for Job Seekers Allowance (JSA).

She claims one Jobcentre officer even advised her to hide her condition from potential employers, despite the chemotherapy leaving her unfit to work on all but a few days a month.

Miss Da Silva’s ESA payments have now been restored but only after she contacted getwestlondon in desperation, having had to rely on family to pay for her housing and food.

The Department for Work and Pensions (DWP) said it had not received her application form, outlining her medical condition, until now.

But Miss Da Silva is sceptical, questioning why she received a rejection letter in November and been told by an ESA advisor and Jobcentre staff that she only qualified for JSA.

“I’ve worked in the UK and paid taxes here for 17 years and when I needed support I couldn’t even get what I was owed,” said the London College of Fashion graduate, who hails from Angola and had been working for a retail company.

“I can’t work while I’m having treatment for my cancer as the chemotherapy leaves me vomiting and unable to stand or sit for long periods.

“My experience has been stressful and painful, and I hope that by exposing my story I can help many other young, single women going through cancer finding a voice. No one in need should have to face what I have.”

When Miss Da Silva’s ESA was stopped, her council tax and housing benefit automatically stopped too, leaving her in even worse financial straits. It is understood they should resume once she begins receiving ESA again.

A DWP spokesman said the majority of people with cancer would receive support group payments for ESA, including anyone preparing for, receiving or recovering from chemotherapy or radiotherapy which will significantly limit their ability to work.

“We understand how worrying a cancer diagnosis is and claims are fast-tracked in these circumstances,” he added.

“We ask new ESA claimants to fill out a medical questionnaire detailing their health condition so we can make sure they get the right support from us.

“We have since received Ms Da Silva’s form and backdated her benefit claim so she does not lose out.”

Nine Out Of Ten ATOS PIP Assessment Centres Don’t Exist

January 12, 2016

Benefits and Work readers have revealed that claimants are being forced to travel sometimes for hours to personal independence payment (PIP) assessment centres, even though there may be one only minutes away from their home. The practice is widespread and may even be unlawful.

Readers responses
Before Christmas we asked readers to tell us how far they had been asked to travel to a PIP assessment and whether there was another assessment centre closer to you.

We asked because we kept hearing from members who were being told to travel almost 90 minutes for a face-to-face assessment, even when there is a centre in their own town.

We’ve had many responses from claimants, mostly relating to Atos, though Capita feature too, and it appears that in a lot of cases people have been expected to travel for a great deal more than 90 minutes in each direction.

Almost 9 out of 10 PIP centres don’t exist
In their bid for the PIP contract for London and the South of England Atos said “Claimants told us that a local, familiar location in which to be assessed was the best option” and that they would reduce the number of ‘Failure to attends’ by “Allowing the claimant to reschedule appointments to the most convenient time.”

Atos went on to claim that:

“As standard, the appointment will be at the consultation centre nearest to the claimant’s home. Given that Atos will utilise approximately 750 sites in Lot 3 to deliver the service, this means that between 75% and 90% of claimants will be within 30 minutes travel of a local centre . . . and less than 60 minutes for all others”

In fact, so far as we can tell, for London and the South of England Atos have fewer than 80 centres in total. Little surprise then that claimants are being asked to travel huge distances, if almost 9 out of 10 proposed assessment centres never materialised..

Computer says go
The problem of too few assessment centres has been compounded for claimants by the way that Atos staff claim the computerised booking service works.

Claimants say they have been told that appointments are released in two week blocks. Software then finds the first available appointment for a claimant at any centre within – possibly – 90 minutes travelling time, regardless of whether there are closer centres.

No check of whether the claimant has provided information about difficulties with travelling is made before appointments are allocated.

Claimants can phone and ask for a different venue or time once they receive an appointment. But, if they refuse this second appointment, their file is then returned to the DWP for a decision on whether to stop their PIP claim for failing to attend a medical without good cause.

There is a real possibility that such a practice is unlawful discrimination the Equality Act, because people who cannot travel far due to their disability or health condition are being put at a substantial disadvantage compared to people who do not have that condition.

How you can help
In many cases people are being sent to towns and venues that they don’t know at all. If you have had a PIP assessment it would be really helpful if you could share whatever information you have about travel, parking and facilities for claimants who are being forced to attend the same centre.

Even though some of this information may be provided in letters from assessment providers, there’s probably a great deal more that you can add from a claimant’s point of view.

We’re starting with Atos assessment centres, simply because Atos at least have the courtesy to publish a list of theirs. If we get a good response we’ll move on to Capita centres.

You can find your Atos assessment centre by going to this page.

Meanwhile, below are some of the experiences our readers have shared with us via comments and email.

700 mile round trip
One claimant was asked to travel almost 350 miles for an assessment. When they refused they were offered an assessment centre closer by – it was only 320 miles away:

“My clients all live in the West Somerset area, and have frequently been asked to travel to Burnham-on-sea, Yeovil and Weston-super-mare – distances of around 40 miles and roughly 90 minutes driving time (no direct bus services to these places, so travel times would be in excess of 2 hours). This means they have to go through Taunton or Bridgwater to get to these places, when assessments are carried out in Taunton & Bridgwater (both around 25 miles away from our area).

“One client with mental health issues was asked to go to Newcastle-upon-Tyne, a round trip of close to 700 miles. When he phoned and asked for a closer appointment they refused saying they would return his claim to DWP saying he failed to attend. When I got involved they offered Hartlepool, which would have reduced the distance by about 30 miles – they did not seem to realise that we were in the South West of the Country, being asked to travel to the North-East. Luckily, I then contacted DWP to explain why client would not be attending and asked that client’s claim was not turned down. It wasn’t and he was awarded PIP without a medical assessment!”

More long distances
Another claimant should perhaps have thought themselves lucky that they were only asked to travel 175 miles each way:

“We live near Eye in Suffolk. This weekend we received an appointment for 10.45am in Doncaster. 4 hours on public transport, each way. I did a bit of searching and then decided to call them. They gave us an appointment in Ipswich 1 day earlier.”

Other claimants have been asked to travel long distances, often at unsuitable times of day, such as this 100 mile round trip:

“l live in Rainham in Kent and don’t drive, l had to travel to Canterbury in Kent at 18.15 so had to travel with an escort on the train, after not long undergoing open heart surgery, so wasn’t in the best state, but was told l needed a face to face interview, which l struggled to attend then when we got off the train it was absolutely pouring with rain, only to be sat around sodden for an hour prior to my appt . . .”

Even where the mileage to a centre is relatively low, the time taken by public transport is often in excess of 90 minutes and sometimes simply cannot be done at all:

“I had to go to Lancaster for my DLA to PIP assessment, a round trip of 86 miles. It takes 3hrs by public transport to get there and then you have to get back with no means of travelling the last 5 miles as the last bus has already been and gone. I drove to the old hospital (90mins) and then couldn’t park near the doors so I struggled to walk inside. Guess what the claim result was, yes I’ve lost my mobility side of it.”

“My sister who cannot go out without supervision had to travel 23 miles, and as no-one to drive was a 3.5 hour bus rides changing twice, to an area which was totally unfamiliar to her which caused even worse anxiety We have a centre 10 minutes away by bus.”

Sometimes, a distant venue is combined with as many changes of transport as possible:

“I live in Hackney, East London and earlier this year had to attend the assessment centre in Southend on sea. This journey took 2 hours each way. However, it’s not really the time that was the issue but the fact each leg involved a 400m walk, one bus, two trains and a taxi which is a bit of a mission for someone in good health.”

Easy to change assessment venues
Often it is relatively simple for claimants to change their appointment to a nearer centre. Though even then it means that if there is a problem with the second appointment they will be referred back to the DWP by the assessment provider for a decision as to whether the claim should be ended for failure to attend.

“Initially I was asked to travel to an appointment 90 minutes away. Telephoned and asked why I couldn’t attend my closest centre which is 12 miles away. Immediately given an appointment closer, from interview to award notice only took 3 weeks.”

“Got my appointment within 2 weeks and just laughed when I opened the letter. they wanted me to go to a centre that was nearly 2 hours away from where I lived. phoned them up and just said why would you send me somewhere that would take me nearly 2 hours to get to when there was a centre only 15 mins down the road. how ludicrous was that. the reply came back that most people were happy to travel 90 mins to an appointment so I questioned this with the reply that why would they think that somebody on disability would be ok to travel up to 90 mins. told them that wasn’t a viable answer and to change my appointment. this was done to the centre 15 mins away.”

“I stay just outside Glasgow and i was asked to attend my medical in Fife which would have been 120 mile round trip …I phoned PIP and asked them if i could move it they said no problem ,

(they guy also said that they get “loads “of calls about this due to the fact that the computer generates these appointments ..and he spent most of his day changing them)

I end up with one in Glasgow on the same day as original one.”

Some claimants manage to avoid having to attend an assessment at all:

“Last week one of my clients was sent an appointment in Wandsworth (he lives in Basingstoke) at 9am. He has both mental and physical health conditions and very limited mobility. When I rang to say he couldn’t get there, or anywhere, for an assessment he was offered an appointment in Reading. However I was able to arrange for a paper based assessment for him.”

Not so easy to change
While some people find it easy to change their assessment venue, others are not so fortunate

“When I found out I would have to travel 24 miles to Cardiff I told Capita I couldn’t manage it and managed to get them to agree for someone to ring and arrange a home assessment. So imagine my shock and distress when I received a letter this week with an appointment booked at the Centre for a week’s time! I had a full blown panic attack. Am still fighting to have a home visit…”

“I have been given an 8 am appointment in a town I don’t know about 30 miles away. I phoned to ask for a better time as I’m not good in the mornings anyway. They said the only appointment available was for the same time 3 weeks later. Nothing else available. I had stressed in my paperwork that I have difficulties with strange journeys and am at my worst in the mornings, so I think they did this on purpose to prove that I can overcome these obstacles.”

“My husband got 3 days notice for his PIP medical at Lancaster at 9am which would be over an hour without rush hour traffic. He has bipolar and a severe spinal injury. He’s in constant pain and has acute anxiety and paranoia about going out. I immediately called Atos to ask for an appointment at our local centre 5 mins away but was told the DWP think it is acceptable to travel up to 90 minutes.”

“I was called in January to a PIP consultation in Preston, 45 miles away. The ATOS website said there were two PIP consultation sites in Kendal, one of them at a doctor’s surgery less than half a mile from my house, but when I asked for an appointment in Kendal I got an email back which stated ‘we do not have an assessment centre in Kendal’.

So it wasn’t the case that the local centre was overbooked, but that its existence was entirely mythical. I had the consultation in Preston.”

Not wheelchair accessible
Assessment providers may claim that all their centres have disabled access. The truth often seems to be quite different. Even where there is a lift to a first or second floor centre, claimants in wheelchairs are routinely told they cannot enter the assessment centre because they would be at risk if there was a fire, as they would not be allowed to use the lift

“We had to do 60 mile round trip (Bournemouth to Southampton) as local assessment centre is not wheelchair accessible, I kid you not!! Southampton assessment centre has no parking and none of the local carparks have disabled bays.”

“My appointment came through for Scarborough which is about 20 miles away with no parking facilities, I use a wheel chair outside and the area the centre is in is not wheelchair friendly, steps outside etc, yet there was an assessment centre 7 miles away in the local hospital which would be ideal and I had to cancel my appointment in Scarborough to get the closer one in Malton which used up one of my appointment cancellations. The appointment was only 2 days later than the original so why couldn’t they have given me this one in the first place?!”

“I have had 2 assessments for PIP one at Anfield, in Liverpool. And one yesterday in Saltney just in North Wales. Both ATOS. These centres are NOT wheelchair accessible.

“The Saltney physio centre has very, very heavy doors that you have to push open but even if you can get them open they do not have any method to hold them open such as a hook or other. A wheelchair bound person could not open these doors and push themselves in no matter how strong they are. I am wheelchair bound and my husband couldn’t manage to push and hold the extremely heavy doors open so banged on the door until a woman came reluctantly to help.”

Cruel cancellations
We also heard from people who suffered great distress because their medical was cancelled at the last minute or they were turned away at the assessment centre because appointments were running late.

There was one account which particularly stood out in this regard. It is long and harrowing:

“My sister has a Learning Disability and brain damage since birth. She has begun the process of change over from DLA to PIP. Capita are doing the Face to Face assessment. She has been asked to attend our local centre at Stoke just 20 minutes drive from the sheltered accommodation where she lives. However, they have so far cancelled 2 appointments – the first 2 days before, the 2nd 40 minutes before (she was on her way) – and they’ve also sent her an appointment that arrived by post 2 days after the appointment date.

“After the 2nd appointment was missed, through no fault of her own, Capita returned her case to the DWP telling them that she had missed both appointments. I only found this out when I contacted the DWP on her behalf – and was told that the decision maker would decide whether she could have another appointment. I had to be quite firm in telling them that it was Capita that had cancelled and then sent an appointment that she had no hope of attending as they notified her too late.

“Finally, she was given an appointment this morning that was cancelled just 40 minutes before she was due…as it was an early appointment (9.25am) they had set out early because of the rush hour traffic.

“Every time an appointment is made I have to contact her support workers and arrange for someone to take her, stay with her during the assessment and then return her home. She has to pay for this out of her benefits.

“Another appointment has now been arranged for January.

“Capita keep trying to make her attend at 8.10am but they have been told that this is impossible for her – she has to stick to her routine and there is no way that we could get her there that early! I’m beginning to wonder if they’ll keep cancelling until we are forced to accept such an early appointment.

“My sister is extremely distressed as she doesn’t like going to places she doesn’t know or speaking to people she doesn’t know. I’m sure that other people are going through the same situation but I thought you would like to know what is going on.”

Finally . . .

Just to remind you, if you’ve got this far, that we would really appreciate it if you can share any information about any of the Atos PIP assessment centres listed on this page.

Thailand Traveller Lucy Hill Has Had Blood Transfusion

January 12, 2016

Some very good news shared on Facebook today by a friend of Same Difference.

Leeds Beckett graduate Lucy Hill has received a blood transfusion after an online plea.

She was knocked off a moped in the Chiang Mai region of Thailand and was rushed to hospital, where she is in a critical condition.

Friends and family of Lucy launched a social media campaign to appeal for backpackers and expats in Thailand to give blood, which was successful.

People were seen queueing outside the hospital up to two hours before it was due to open today to give blood and help support Lucy.

Lucy has an A Negative blood type, which is extremely rare in Thailand.

Close friend Lauren Hall said: “The support was phenomenal. We have been overwhelmed by everyone’s kindness.

“Luce is now stable but still in a critical condition.”

The most vulnerable are being investigated for fraud because of trifling sums of money in savings accounts

January 12, 2016

argotina1's avatarBenefit tales

I accompanied someone to a compliance interview today. Let’s call her Sally. The DWP compliance office is concerned with investigating possible benefit fraud.


Well, we hardly had to say anything. The Compliance Officer was visibly upset, and very apologetic. She explained that the DWP has software that allows it to trawl through private bank records to find accounts in the name of benefit claimants that had not been declared. Where this happens a letter is sent automatically, warning of a forthcoming telephone compliance interview.

She told us that the DWP seems to have made a decision to target the most disabled and vulnerable people (those in the support group) who have set up small ISA savings accounts to try and put a bit of money aside. Last week all she saw was people who were so vulnerable that they had case workers and similar with them.


She explained that a…

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David Bowie Dies Of Cancer Aged 69

January 11, 2016

I shared the sadness of the whole UK- possibly much of the world- this morning on the announcement of the sad death of David Bowie from cancer aged 69.

Being 40 years younger, I haven’t heard many of his songs. However, I did hear Space Oddity in recent years, as the track hit the news when astronaut Chris Hadfield sang it in space.

David Bowie was fascinated by space, aliens, and Mars, as many of his song titles prove. This is a fascination I have always shared with him.

This morning’s Victoria Derbyshire programme was dedicated to tributes to the Starman and presenter  Norman Smith made the point that he often wrote and sang about difference. As a disabled writer who often writes about difference, I can definitely relate to that.

Disabled comedian Ted Shiress shared this video on Facebook of David Bowie performing Heroes live at Neil Young’s school for severely disabled youngsters in October 1996.

Readers, this is an open thread for your tributes to the Starman.

RIP Sir.

Benefit Cuts Put Cancer Patients At Risk Of Homelessness Finds Macmillan Study

January 11, 2016

Cancer patients could be at risk of losing their homes if proposed government cuts to Employment and Support Allowance (ESA) go ahead, according to new research commissioned by Macmillan Cancer Support and carried out by Truth Consulting. 

The survey of nearly 1,000 people living with cancer in Great Britain found that one in ten (10%) would be unable, or would struggle, to pay their rent or mortgage if they lost £30 a week[1]. 
This is the amount the Government proposes to cut from 2017 from those who are independently assessed as too ill to work, but may be capable of work at some time in the future.
The risk of being made homeless is drastically higher for those currently in receipt of ESA, of which the survey included 78 people. More than one in three (36%) say they would be unable or would struggle to pay their rent or mortgage if the benefit was cut by £30 a week. [2] 
Latest Government figures show at least 3,200 people with cancer currently receive the ‘Work Related Activity’ element of ESA – the benefit the Government is proposing to cut by almost a third.[3] It is a benefit of £102.15 a week received by those too ill to work, but who may be able to work at some point in the future. Macmillan warns this is a benefit that many people with cancer will be in receipt of at some point during their lives, so cuts will affect many more. The charity is calling for a halt to government plans.
Existing Macmillan research shows that living with cancer can be extremely expensive and many people already face financial strain after their diagnosis. Most will incur extra costs, such as transport and heating, as a result of treatment at the same time as they are left unable to work [4]. Today’s research demonstrates how reducing these vital funds even further would push people over the edge financially. 
Terry White, 62, from Nottinghamshire, was diagnosed with Non-Hodgkin Lymphoma in 2009. He says: 
“I’d worked hard as an electrician and seven years before my diagnosis had bought my dream family home. But then treatment started and my income vanished and for the first time in my life I needed the benefit system. 
 “Sick pay, redundancy payments and benefits just weren’t enough to cover the added expenses that come with cancer, let alone my mortgage repayments and we got behind. I had no choice but to sell the house I’d worked so hard for and to ask my two sons to find their own living arrangements. Losing my house was an added stress I didn’t need whilst facing cancer and going through gruelling chemotherapy.  I can’t imagine surviving on any less money.”
Dr Fran Woodard, Executive Director of Policy and Impact at Macmillan Cancer Support says:
“The devastating impact that changes to Employment and Support Allowance will have on the lives of people with cancer is clear. It’s truly distressing to think that people with cancer could be forced out of their homes or fear a knock on the door from bailiffs at a time when they should be focused on recovering.
“Macmillan, along with a number of other health charities, has been calling on the Government to remove their proposed cuts to Employment and Support Allowance from the Welfare Reform and Work Bill since they were announced in July. They have so far refused to listen to us. 
“As the Bill moves to its final stages, the Government can no longer ignore the reality of what they’re doing. They desperately need to rethink these proposals.”
Macmillan is calling on the Government to remove the proposed £30 a week cut to the Employment and Support Allowance (ESA) Work Related Activity Group (WRAG) from the Welfare Reform and Work Bill. 

The Challenges Faced By Disabled Commuters Travelling To Work

January 11, 2016

The daily commute can be testing for many workers, but disabled travellers often face extra challenges and costs.

One Paralympian told the BBC that public transport was simply not fit for purpose to accommodate their needs.

Nikki Fox reports.

Global Appeal To Find A- Blood For Thailand Moped Crash Woman Lucy Hill, 21

January 11, 2016

The family of a woman involved in a serious moped crash in Thailand have made an urgent appeal for people with the same rare blood type as her to come forward.

Lucy Hill, 21, was just one week into her gap year after graduating from Leeds Beckett University when her moped was hit by a car on Saturday morning at around 7.30am local time.

She was rushed to hospital for treatment to a bleed on her brain and had emergency surgery to insert titanium plates to her broken hip.

Lucy’s mother, Alison, has flown to Thailand to be at her bedside, along with travelling companion, Lauren Hall.

Lucy is currently fighting for her life, and is anemic after losing blood during surgery. However, her ‘A Negative’ blood type is rare among people of Asian origin, and an international appeal has been issued to find donors in the country.

Writing on Facebook, her friend Lauren said:

Negative blood is rare in Thailand and sourcing the blood is difficult.

If anyone is around and is A Negative blood type please can you contact myself on Facebook, call me on +61 484346507 or head to Maharaja Nakorn Chiang Mai Hospital and say it is to be donated to Lucy Anne Hill at Rajavej Hospital. I understand it is your holiday but this is my friend. It doesn’t take long and it will do a great thing.

– Lauren Hall, Facebook

Doctors say less than one percent of the Thai population have the same blood type as Lucy, so her family and friends are pleading for ex-pats and those travelling in the country to come forward and donate.

Originally from Bury, Lucy was planning on continuing her studies and training to become a teacher when she returned from her travels. Her family are receiving assistance from the British Consul in Thailand.

Speaking to ITV News, her father, Phil said he is struggling to come to terms with the news:

She’s in a bit of a mess. You could say it’s quite serious.

We’re still trying to find out information so my wife has flown out to be with her and speak to her doctors and find out anything she can.

We just want to make sure Lucy’s alright and then get her home safely.

– Phil Hill, Lucy’s father

Anyone in Thailand who matches Lucy’s blood type have been asked to attend the Maharaja Nakorn Chiang Mai Hospital at 8.30am on Monday morning for a blood test.

Anyone attending should make clear they want the blood to be sent to Lucy Anne Hill at Rajavej Chiang Mai Hospital.

Meanwhile, Lucy’s friends have set up a crowdfunding page to help pay for her treatment.

Mystery Survey On Opinion Outpost Website Asks About £20-£30 Weekly Reduction To DLA/PIP

January 9, 2016

An anonymous survey being promoted via the Opinion Outpost website asks contributors about how they would cope if their PIP/DLA was cut by £20 – £30 a week, a worried member has informed Benefits and Work.

Opinion Outpost is a website where individuals can sign up to complete surveys in return for cash or vouchers, after giving details about themselves

Our member was given the opportunity to complete a survey for claimants of DLA and PIP.

They were asked about their award of DLA or PIP and what disabilities they have.

They were also asked about how much they spent on disability aids and related articles.

Towards the end of the survey they were asked how they would cope if their benefit was reduced by £20 to £30 a month.

Our member is very concerned that this might be a survey by the DWP and could be evidence that they are intending further cuts.

However, it could also be a charity or advocacy group wanting to highlight the plight of claimants.

We’d be very pleased to hear from anyone who can shed more light on this.

Same Difference adds: Our editor is a member of YouGov, a better-known website similar to Opinion Outpost. She has not, as yet, been asked any questions about coping with such a reduction to her DLA.

However, we believe it is not unreasonable to think that if such questions are being asked by the DWP, YouGov will also be asked to promote them in the near future. So if our editor does receive such a survey from YouGov, we will keep readers updated.

Meanwhile we join Benefits And Work in being very interested to hear from any other members of Opinion Outpost who may have received their survey.

Attendance Allowance To Be Axed

January 9, 2016

With many thanks to Benefits And Work.

 

The Conservative government is about to launch a consultation on abolishing attendance allowance for all new claims and giving the money saved to local authorities instead.

The news was quietly released before Christmas in the Local Government Finance Settlement which explained that:

“The Government will also consider giving more responsibility to councils in England, and to Wales, to support older people with care needs – including people who, under the current system, would be supported through Attendance Allowance. This will protect existing claimants, so there will be no cash losers, and new responsibilities will be matched by the transfer of equivalent spending power. The Government is planning to consult in the New Year on this proposal, including on the right model of devolution and the level of flexibility that councils would need in order to effectively deliver this additional responsibility.”

By not axing the benefit of current claimants the government will hope to stifle most opposition as there are no immediate losers.

However, once attendance allowance for claimants aged 65 or over with care needs is abolished, how long will it be before PIP for older claimants also faces the axe?

We’ll keep readers informed when the consultation document is published.

MC Geezer- The Deaf Rapper

January 9, 2016

MC Geezer from London grew up listening to Bob Marley and Natty King, but he couldn’t listen to it in the same way as his peers because he is deaf.

Real name Matthew Taylor, he would push the volume up loud so that he could listen by feeling the bass vibrations in his body instead.

Determined to become a rapper because of his love for hip-hop, he set out to follow his dream, communicating his lyrics to the crowd through sign and speech.

“I go out there and speak the truth about what it’s like to be deaf and be in the deaf community,” he says, “It’s not easy but we survive it.”

Sense responds to National Audit Office damning report on fit-to-work assessments

January 8, 2016

 

A press release:

National deafblind charity, Sense has today (08 January) responded to a damning report published by The National Audit Office (NAO) which has found that the Government is spending more money assessing whether people are fit to work, than it is saving in reductions to the benefits bill.

The study found that the Department for Work and Pensions (DWP) will spend over £1.6bn over the next three years on private contractors who will carry out the Work Capability assessments, with the aim to slash the number of claimants on Employment and Support Allowance (ESA).

Richard Kramer, Deputy Chief Executive at Sense, said:

“The report will cause anxiety and stress for disabled people that already fear the assessments are geared towards saving money, rather that ensuring they receive enough benefit to live their lives.

“The DWP must seriously consider NAO’s recommendations for improvements. The starting point must be that it works for disabled people and that Work Capability Assessments are delivered in a timely, efficient and cost effective way.”

Disability Benefit Assessments ‘Underperforming’ In Spite Of Rise In Cost Finds NAO

January 8, 2016

The government is failing to achieve value for money in carrying out assessments for disability benefits, the National Audit Office has said.

The spending watchdog’s report found tests were becoming more expensive, but quality was not improving. However, oversight was better, it said.

The cost of some assessments went up by 65% after a US firm secured a contract to carry them out in March.

The Department for Work and Pensions says it will look at the findings.

Disability charities said the assessment system was still failing claimants.

Problems ‘exacerbated’

Health assessments for Employment and Support Allowance are carried out to ensure claimants are eligible for benefits.

Private provider Atos quit its contract in 2014 and was replaced last year by US firm Maximus.

The new contract requires an increased number of face-to-face assessments – with more staff needed to carry them out.

The NAO said there had been a struggle to recruit enough specialist medical staff to meet demand, while rising salaries had contributed to the rise in the average cost of each assessment – from £115 to £190.

This meant it would cost £595m to carry out the 3.4 million assessments needed by the 2018-19.

A spokesperson said that despite increasing the size of its performance management team, the DWP “continues to struggle with setting targets and requirements with clear evidence”.

“Recent performance shows the department has not tackled – and may even have exacerbated – some of these problems when setting up recent contracts,” they said.

At least £76m of taxpayers’ money had also been wasted by the failure to get a new IT system up and running – more than two years after it was supposed to be in place, the watchdog added.

Expected savings to the welfare budget had been reduced from £1.1bn over the next three years to £400m, it said.

Ensure ‘better deal’

The head of the NAO, Amyas Morse, said the DWP had “addressed some of its immediate operational issues in managing contracted-out health and disability assessments”.

But he said the government needed to “take action to break a perpetuating cycle of optimistic targets, contractual underperformance and costly recovery”.

A DWP spokesman said it would consider the report, adding: “We are determined to support more people into work and provide individuals who can’t with the correct support that they need – the effective assessment of people’s abilities is key to this.”

Shadow minister for disabled people, Debbie Abrahams, said the report exposed a “shambles”, adding “too many disabled people have been badly let down by these assessments”.

And Dan Scorer, head of policy at the charity Mencap, said “people with a learning disability who rely on the support from benefits are still suffering from a system that fails to help the people it is designed for”.

Man walks into Ashton Under Lyne Jobcentre, gets sanctioned goes home and commits suicide. Another day outside the Jobcentre.

January 8, 2016

Charlotte Hughes's avatarThe poor side of life

I wrote this on my Facebook page and people were shocked. I don’t think the enormity of it all actually hits you unless you either are or have been in a similar situation or you spend a lot of time outside a Jobcentre like we do. Its easy to forget I suppose, if you aren’t reminded about it all that time like I and my comrades are. The news obviously doesn’t cover this issue, unless it is spoken about in parliament. Even then its only a few lines in the paper. The only newspaper that will freely write about it is The Morning Star. The paper that I’m lucky enough to get my articles in. If you don’t buy it try it. Its a refreshing change to read the real news.

It was freezing today outside the Jobcentre. It was already cold but the wind chill was bad today. The…

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Bodies Confirmed To Be Ex-Eastenders Actress Sian Blake And Her Two Children

January 7, 2016

Three bodies found in the garden of former actress Sian Blake are those of the former EastEnders star and her two children, police have confirmed.

The remains of Sian Blake, 43, and her children Zachary Bilal Kent-Blake, eight, and Amon Ben George Kent-Blake, four, were found at the family’s south-east London home on 6 January.

A police spokesperson said they had died from “head and neck injuries”.

Ms Blake’s partner is being sought by police over the deaths.

However, the BBC understands Arthur Simpson-Kent, 48, left the UK and may be in Ghana.

Ms Blake and the couple’s sons had not been seen since 13 December. They were reported missing three days later.

Police said a missing persons’ investigation had been launched on 16 December after officers attended the family’s home in Erith.

This was undertaken following information from the children’s charity, the NSPCC, over concerns about Ms Blake’s health, police said.

Forensic specialists were called in to search the family home on 4 January. The bodies were found during excavations in the garden two days later.

Significant attempts had been made to conceal the bodies, police said.

Det Supt Paul Monk, from the Met’s Homicide and Major Crime Command, said the police were “continuing to appeal for any information about the movements of Arthur Simpson-Kent”.

Ava Blake, Ms Blake’s sister, has claimed the former EastEnders star had previously said she wanted to leave her boyfriend.

Sian Blake, who had motor neurone disease, played Frankie Pierre in the BBC One soap between 1996 and 1997.

The Met has referred the case to the Independent Police Complaints Commission over how the investigation was handled.

Sick and disabled mother told her benefit is cut on the day she died

January 7, 2016

Same Difference was shocked by this story on Monday- these are the details.

Kitty S Jones's avatarPolitics and Insights

A MOTHER who was battling a serious lung condition was told she no longer qualified for benefits on the day she died from her illness.

Dawn Amos, 67, died of chronic obstructive pulmonary disease (COPD), a collection of lung diseases, which cause severe breathing difficulties, and increases susceptibility to infections such as pneumonia.

The illness left Dawn with difficulty breathing, she was unable to walk for long periods of time, and she was left struggling to dress herself and unable to manage daily tasks independently.

She received attendance allowance from the Department of Work and Pensions (DWP) to help with the extra costs of her essential personal care.

Heartbroken husband Mick Amos, 64, discovered a letter sent from the DWP two days after his wife’s death.

It was a notification that Mrs Amos’s allowance was being withdrawn, based on “treatment, medication, symptoms and test results.”

It had been sent out…

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Tribunal Decision Suggests You Need A Maths Degree To Decide If You Can Get PIP

January 7, 2016

With many thanks to Benefits And Work.

 

A recent personal independence payment (PIP) decision by an upper tribunal says that probability theory must be used to calculate eligibility for claimants who have more than one health condition. The decision even goes into great lengths about how to mathematically calculate the probability of two independent conditions occurring for more than 50% of the time.

Bad days
The bizarre decision relates to a claimant who had both chronic obstructive pulmonary disease (“COPD”) and rheumatoid arthritis.

The first tier tribunal found that the claimant had 3 bad days a week for COPD, and 2 to 3 bad days a week, depending on the weather, for rheumatoid arthritis. Each condition affected the claimant’s ability to carry out some of the activities in the PIP test, such as preparing food or dressing.

The tribunal decided that the claimant’s conditions did not cause him to satisfy any point scoring descriptors for over 50% of the time, as required by regulation 7, so he was not eligible for PIP.

Probability theory
The upper tribunal judge, however, held that the tribunal had failed to find out if the effect of one condition was enough to cause problems or whether there was only an issue when both conditions applied at the same time.

If the effects of either condition on its own was enough to allow points to be scored, it would still be necessary to work out how many days a week on average, the claimant was affected by one or both conditions. If 50% or less then no award of PIP could be made.

Relying on a submission by the DWP, the tribunal judge went on to set out in great detail how to calculate the probability of the two conditions occurring for more than 50% of the time.

We have reproduced, some, though by no means all, of the mathematical evidence below.

If we say that the rheumatoid arthritis occurs 3 times a week then the probability that regulation 7 is satisfied is worked out as follows:

Probability(A or B) = Probability(A) + Probability(B) – Probability(A and B)

The probability of event A (arthritis) occurring, 3/7, is added to the probability of event B (COPD) occurring. 3/7 + 3/7 =6/7.

However, this probability (6/7) also includes the times on which the COPD and arthritis both occur. This must be subtracted. It is double counting.

The probability of the COPD and arthritis both occurring is 3/7 x 3/7 = 9/49.

We need to subtract 9/49 from 6/7. To do this we convert 6/7 into 42/49 (by multiplying by 7). We can then do the simple sum 42/49 – 9/49 = 33/49. This is the probability of an operative condition being present on a given day.

33/49 can otherwise be understood as 4.71/7, if you were looking at this on a weekly basis (as we have been here).

Therefore the descriptor is satisfied for more than 50% of the days.

American Campaigner’s Excitement Over Hillary Clinton’s Autism Plan

January 7, 2016

From yesterday’s Guardian:

Hillary Clinton just made disability history. For the first time, a mainstream political candidate prioritized the rights and opinions of autistic people by embracing policies that autistic advocates and activists have rallied around for years.

Clinton’s autism plan, announced Tuesday, is well-informed and shows a grasp of the issues that few outside of disability rights circles have. If she wins the election and does even half of the things she promises, she could make an enormous difference in the everyday lives of autistic people. If she loses, she has still tremendously raised the bar on how presidential candidates can and should address autism.

Her plan focuses on necessary and sorely needed support programs for autistic people: improving employment opportunities and housing availability, significantly limiting the use of physical restraints, guaranteeing access to assistive communication technology for people who are nonverbal or have difficulty with spoken language and a specific call to do research on adult autism prevalence and needs. These issues are of vital importance to autistic people and our loved ones. No other major US presidential candidate has made these issues a part of his or her political platform.

Political discourse around autism in the US has followed a very different narrative over the past few decades: autism is a tragedy. Autism is an epidemic. Autistic children need you all to donate money to genetics research that will not help those currently living with autism in any direct or meaningful way.

The fear of this “autism epidemic” is used to justify any number of illogical, yet widely accepted, perspectives, like the repeatedly debunked notion that childhood vaccines cause autism. It is apparently better for dozens to die from measles than to possibly risk that your child might become autistic. In this perverse worldview, autistic adults do not matter. We are the worst outcome. We can be consigned to segregated workshops where we do meaningless work like unwrapping bars of soap or capping lotion bottles for less than minimum wage – if we are employed at all. After our parents die, we disappear entirely. This may seem dystopian, but it is reality for many Americans.
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It isn’t just the shift in emphasis that I applaud, but the language itself. The extreme, pathological language that usually surrounds autism is almost totally absent from Clinton’s proposal. The word “epidemic” doesn’t even occur once. “Disease” only occurs in reference to the Centers for Disease Control and Prevention. Oftentimes, autism is portrayed as a sort of tumor – an unpleasant, discrete growth that can be separated from its “host” and destroyed. The thing is, autism doesn’t work that way, and Clinton’s proposal doesn’t act like it does. She doesn’t talk about combating autism. Instead, she provides concrete ways to improve the lives of autistic Americans. I am delighted.

As a left-leaning 20-something, I would have never predicted that I would use the word “delighted” in relation to Hillary Clinton. She’s hawkish and relatively conservative. During her time in the Senate, she spoke against marriage equality and voted for domestic surveillance. Like many of my peers, I should be “feeling the Bern”. However, in promising to help support and preserve the rights of people whose humanity is rarely acknowledged, she has proposed something more progressive than many, if not all, of her opponents’ policies.

Donald Trump’s offhand and ill-informed comments about the supposed link between childhood vaccination and autism are even more obscene in the light of how well Clinton, or at least Clinton’s advisers, understand the issues. She is even far surpassing Bernie Sanders in this area – he hasn’t said a word about an autism platform. If he releases his own autism plan, I will reconsider my position.

Tammy: The Undateables Gave Me Confidence

January 7, 2016

When Tammy Saunders lost part of her face her confidence died. But getting back into the world of dating has helped her re-find her self-confidence, she writes.

I don’t think there is anyone who could honestly say that they are 100% confident.

We all have those aspects of our appearance, personality or abilities that cause self-doubt at one time or another. The teenage years are often the worst and my teens were an uphill struggle against bad skin, frizzy hair and body woes. The beauty and charisma of childhood were gradually chipped away. By my mid-teens I was so self-conscious that I would try my hardest to avoid any activity that might involve people looking at me.

My mum could see that I was having issues with self-esteem and decided to do something about it. Not being a fan of the softly-softly approach she made me apply for a job in a local restaurant. I was terrified at the mere thought of it and even more horrified when I was given a job as a waitress. There is a method of teaching babies to swim where the parent simply plops the infant into the water and lets it get on with it. I was like one of those babies and I got on with it just as well.

Within months I had blossomed into one of the best members of staff they had. I still hated the way I looked but it wasn’t the main focus anymore. I was praised and liked for my strengths.

By my 20s I had built on this and, with the addition of some foundation, mascara and lipstick, I actually felt pretty. I had a boyfriend, a home, a career and for the first time in years I was fairly happy with my looks and life in general. However, at the age of 32 my looks and my life changed forever.

Christmas of 2013 was much like any other, going to my mum’s to spend the holiday with family. I had planned a trip to London on the 27th to see my sister and her family but I woke up that day feeling lousy, so postponed until the next day. But by the next day I was in the intensive care unit of my local hospital.

What I had assumed was a hangover got progressively worse until I could barely get out of bed and even a sip of water made me vomit. I passed it off as a nasty sickness bug, convinced my brother was being dramatic with his talk of doctors.

When my legs and lips went numb I was slightly more concerned. My extremities felt cold and nothing I tried could warm them up. I went into my mum’s bedroom and with one look at me she shouted for my stepdad to call an ambulance. Two hours later I was comatose in a hospital bed hooked up to drips, monitors and machines to keep me alive.

It took ten days for me to be diagnosed with meningococcal septicaemia, a strain of meningitis that causes blood poisoning. I also had disseminated intravascular coagulation (DIC) which is a severe version of the rash associated with meningitis. The DIC caused my blood vessels to haemorrhage and bleed under the skin, looking at first like bruising and then turning black as my circulation shut down. My extremities were the worst affected and it resulted in necrosis on my face and limbs. I lost the bottom half of my nose and almost all of my lips. The flesh on the bottom half of my legs and small areas of my arms, hands and feet had to be removed and the surviving skin on my limbs is criss-crossed with burn like scars. Tendons, muscles and nerves were also damaged so I have been left disfigured and with mobility and dexterity problems.

So here I was again with a face and body that I was deeply unhappy with. I was in hospital for four months but outside of the safety of the hospital, where it seemed OK to look such a wreck and everyone knew why I did, I became very self-conscious. Before my illness I had worked hard to become a very social and active person but when I got home from hospital I would rarely leave my flat for anything other than hospital appointments.

I felt broken and pathetic. It was as if the old, independent, free-spirited Tammy had died and in her place was this person I hardly recognised. I didn’t like what I saw and not just because of my appearance. When I mentioned these feelings to friends or family they were surprised. To them I was the same old Tam but with the added bonus of having fought through a terrible time with a smile on my face.

As embarrassing as it was, and still is, to hear words like “inspirational” and “powerful” I started to think to myself that all these people can’t be wrong. I was still the same person inside and deserved to be happy.

That’s why I applied to be on Channel 4’s The Undateables – a dating programme for people with challenging conditions. I’d cheated death for goodness sake so I was pretty sure there was nothing I couldn’t do.

So, like the drop in the deep end that my mum had given me in my teens, I decided to make myself take a leap.

It worked. Being on the programme has given me the boost I needed. I have been reminded of my good points and was pleasantly surprised to find that everyone I met also saw those good points, not just a bad face. Coming from strangers who have no “old Tam” for backup this was uplifting and I found telling my story a cathartic process.

The date itself was the icing on the cake.

I had been a bag of nerves beforehand but within minutes of meeting him I was able to forget my appearance. He looked into my eyes, not at my scars and liked me for my personality. It finally proved that despite everything that has happened I am still an attractive person because of how I am inside.

Since filming I have been back in hospital three times and each time I have made new friends. When I was first admitted into hospital I wouldn’t even see my old friends for fear of how they would react to how I looked but now I have the confidence to share a ward, to chat, laugh and cry with people I hardly know. With each person that says something lovely or stays in touch because they care about my recovery, that confidence grows.

I am often told that it doesn’t matter what other people think about me, but it does – especially when their thoughts validate something I already feel about myself.

I have had negative reactions. I do get stared at and whispered about and while I understand this behaviour I also know it is wrong.

Since my episode aired the level of confidence that I felt at the end of my date with Gary has increased tenfold. I had braced myself for the response, knowing that there are people out there who thrive on giving negative feedback but I needn’t have bothered. While I expected friends and family to support me I also received praise from people I’d never met and endless reams of heart warming tweets. It has confirmed to me again and again that I am a lovable person.

My journey with confidence is still a work in progress and I am thankful the majority of people want to help me on the way. I am determined to keep their focus, and mine, on the good points. I know now that confidence comes from the inside.

The second episode of The Undateables is on Monday 11 January 2016 at 21:00 GMT on Channel 4.

Please Help Jordan And Lamaya Play With Toys That Represent Them

January 7, 2016

The brilliant people at Toy Like Me publicised these two petitions last night. I’ve signed them both.

Jordan aged 10 was born without a left hand and Lamaya also 10 has had multiple open heart surgeries.

These two kids are fed up of never seeing disability positively represented in the toy box and are calling on Mattel, to produce American Girl dolls which represent children like them. They are gathering signatures fast…but they would love more! Please spare five minutes to bung a signature on their petitions and help make dreams come true for these kick-ass kids looking to change the toy box!

https://www.change.org/p/jean-mckenzie-mattel-help-american-girl-understand-why-limb-difference-dolls-are-so-important

and

https://www.change.org/p/american-girl-make-american-girl-dolls-with-open-heart-surgery-scars

Love #ToyLikeMe – calling on the global toy industry to positively represent 150 million disabled children worldwide.

My experience of The Work programme.

January 6, 2016

Charlotte Hughes's avatarThe poor side of life

Sorry its been a while since I have updated. The Christmas period has been a busy one and my oldest daughter hasn’t been well. As regular readers will know she has been very ill and has a growth behind her eye. Its not responding to treatment so she’s been in a lot of pain but she will be starting a new treatment plan soon so hopefully that will help. Also my tablet that I write on hasn’tbeen working properly so Im using my telephone to blog.

Just over two years ago I was placed on the work programme. I had already found a job off my own back with no help from the Jobcentre, but it was deemed that I attend the work programme for a total of 2 & 1/2 days. If I didn’t attend I would get sanctioned, and I couldn’t afford to loose 2 days money. So…

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Disabled Workers Face Discrimination- And They Can’t Afford Justice To Deal With It

January 6, 2016

The abuse started for Helen Adams (not her real name), a senior administrator at a major UK charity, after her boss watched her get out her of wheelchair. The 40-year-old has multiple sclerosis and struggles with mobility, but on a “very good day” she says she was able to walk in the office.

“I went to lunch and a manager who’d seen me walking earlier yelled at me across the busy room to get out of my wheelchair because ‘I wasn’t really disabled’,” Adams recalls. “I was so shocked and upset that I didn’t know what to say. I said nothing. The rest of the day, people were looking me up and down and tutting at me.”

Over the next few months, the harassment spread throughout the office.

“People started pressing all of the lift buttons when they saw me coming, then they would close the doors so the lift would go all over the place while I waited there,” she says. “All the while, I could hear people on the floor above and below me shouting “Lazy cow!”

The stress led Adams to go on sick leave and start twice-weekly counselling. A few months later her manager told her she needed to learn to ignore the abuse. Instead she went for legal advice.

What Adams didn’t know was that in July 2013 – just as her workplace abuse began – the coalition government had brought in fees to have a claim heard at an employment tribunal (the first time fees have been charged since the tribunal system was established in 1964).

“The solicitor told me I had a clear case but, because of the new fees, I’d need to pay for it myself. I couldn’t afford that and my therapy,” Adams says. “I knew I had no comeback.”

This threat to disabled worker’s employment rights is highlighted in new research by the Public Interest Research Unit (PIRU) and the campaign group, Disabled People Against Cuts (DPAC),seen exclusively by The Guardian. With the House of Commons justice committee’s wider inquiry into the impact of the introduction of tribunal fees due to report early this year – the research chronicles the experiences of 270 disabled workers. It shows not only a marginalised group open to discrimination at work but, increasingly, faced with little way out.

In 2014, the high court dismissed a challenge by Unison over the wider legality of the fees regime and the supreme court is currently considering Unison’s application to appeal the decision. 

The government’s equality impact assessment in 2012 confidentially concluded that fees would have few if any adverse impacts on equality or equality groups. But according to Ministry of Justice (MoJ) figures, disability discrimination claims have fallen rapidly since fees were introduced: 63% fewer were accepted by the employment tribunals between the first quarter of 2013/14 (pre-fees) and the first quarter of 2014/15 (post-fees).

“We know the number of discrimination cases going to employment tribunal has dropped off a cliff but we also know that discrimination of disabled people in the workplace hasn’t,” says Lucille Thirlby, head of equality at the trade union, Unison.

Taking a disability discrimination case to an employment tribunal costs a minimum of £1,200.

The government has put a remission scheme in place but to qualify for a reduced or no fee, an individual has to pass a monthly income and “disposal capital” (such as savings) test. The MoJ has confirmed that disability living allowance (DLA) and its replacement, personal independence payment (PIP) is included as “disposable capital”. In practice, this means disabled applicants – who need DLA or PIP to pay for disability costs – are in the perverse situation of risking being judged as less eligible for help with fees than non-disabled people.

The PIRU research suggests that it is not only fees that are affecting disabled workers’ ability to go to employment tribunals but have actually encouraged employers’ sense of freedom to discriminate in the first place. Another respondent with a visual impairment who works in the third sector says due to government cuts in legal aid funding she wasn’t able to access proper advice and didn’t make it past a preliminary hearing for a tribunal.

It also points to the wider, hostile climate facing disabled workers: vulnerable to being victimised by employers but charged for the right to seek justice, and cut off from legal representation. As one respondent, a local council data analyst, put it: “The whole lot has a chilling effect on even contemplating a case, no matter how bad or personally hurtful the level of discrimination”.

Adams is still in the same job, daily faced by the same manager and colleagues. “It’s never really stopped, it just got less,” she says. “I’m still very anxious if certain people come near me at work and I’m still on the antidepressants. I’ll simply lump it until the stress of it simply drives me from my job.”

Post-Mortem Tests Due On Bodies Found At Home Of Ex-Eastenders Actress Sian Blake, 43

January 6, 2016

Post-mortem examinations will take place later on three bodies found in the south-east London garden of a missing ex-EastEnders actress.

Sian Blake, 43, and her two sons aged four and eight, have not been seen at their Erith home since 13 December.

Her partner Arthur Simpson-Kent raised the alarm, but disappeared three days later and is being sought “urgently”.

The Met is being investigated over why it took three weeks for the, as yet unidentified, bodies to be found.

Its Directorate of Professional Standards is working with the team to “fully understand the timeline of police interaction with the family”.

Ms Blake, who had motor neurone disease, played Frankie Pierre in the soap between 1996 and 1997.

The actress, whose character broke up the marriage of Alan and Carol Jackson, was last seen with sons Zachary, eight, and Amon, four, in Walthamstow.

Her car was found on 3 January in Calvert Avenue, Bethnal Green but it is not yet known how it got there.

Det Supt Paul Monk said: “It’s too early to speculate. Our efforts are continuing to find Arthur Simpson-Kent… we do need to speak to him as a matter of urgency.”

Mr Simpson-Kent, 48, is the father of the two children.

A 30-year-old neighbour, who did not give her name, said: “She was a lovely, caring lady. I was hoping she was just hiding away to have her last Christmas. I wish I had been a better neighbour. I’m devastated.”

A family member had reported the three missing on 16 December, and two days later a missing persons inquiry was launched, but not classed as high risk.

The same day officers returned to the house, and forced their way in when there was no answer. On 4 January the homicide team took over.

As well as EastEnders, Ms Blake also appeared in the 1998 film Siberia and TV movie May 33rd in 2004 under her stage name Syan Blake, according to her IMDB profile.

Yemen Home For Blind Children Bombed By Saudi Arabia

January 6, 2016

Three Bodies Found In Search For Disabled Former Eastenders Actress Sian Blake, 43 And Her Children

January 5, 2016

This story that Same Difference has been following closely has had a very sad ending.

Police searching for a missing former EastEnders actress and her two children have found three bodies at their south-east London home.

Sian Blake, 43, and her two young sons, aged four and eight, have not been seen since 13 December.

The Met Police said the bodies were found in the garden and a murder investigation was under way.

Ms Blake’s partner Arthur Simpson-Kent, 48, had alerted police but went missing himself three days later.

Mr Simpson-Kent is the father to the actress’s two children Zachary, eight, and Amon, four, who were last seen in Waltham Forest, north-east London.

Ms Blake, who has motor neurone disease, played Frankie Pierre in the soap between 1996 and 1997.

Det Supt Paul Monk said: “As yet, we have not formally identified the bodies but this is a significant development and Sian’s family have been informed.”

Police had earlier revealed that Ms Blake’s car had been found on Calvert Avenue, Bethnal Green, east London on 3 January, although it is not known how it came to be there.

Det Supt Monk said the force was continuing to try and track down Mr Simpson-Kent.

Next-door neighbour Sam Sanni-Alashe said: “I am in shock. I know the lady. I see the children playing at the back. I say hello all the time. We are not close but she was a very happy woman.

“This is a disaster and it is awful for the community.

“I would see them most of the time in the summer but I have not seen them for about six weeks,” he said.

Neighbour Hannah Cutting, 18, said: “I would see the kids playing at the window then we were worried when police were there 24/7.”

As well as EastEnders, Ms Blake also appeared in the 1998 film Siberia and TV movie May 33rd in 2004 under her stage name Syan Blake, according to her IMDB profile.


Bionic Eye Restores Sight To RP Woman Rhian Lewis

January 5, 2016

At Oxford’s John Radcliffe Hospital, a clinical trial is taking place in which six patients who have had little or no sight for many years are having a cutting-edge “bionic eye” implanted in an attempt to give them some sight, and independence, back.

The first patient in this trial is 49-year-old Rhian Lewis, from Cardiff.

She explains: “I was a toddler when my parents noticed I would not cross a darkened room, even from one light room to another light room, and that I was really scared of the dark. So they took me back and forward to the optician and specialists and then they diagnosed me with retinitis pigmentosa.”

This disorder destroys the light sensitive cells in the retina – but how much and how quickly varies from person to person. In Rhian’s case, it eventually made her almost completely blind.

“I think I was about four or five. I’ve never had any vision at night or in dim light and then, as I went through school, I had the glasses and I sat at the front because I couldn’t see the board.

“It was progressive and as I went to work in a shop, checking up deliveries, I had to use a magnifier increasingly to check the delivery notes and then I couldn’t read the titles of the books properly, so then they put me on to different materials, like art and stationery, because there were different shapes and sizes so I could manage with that – I could do a lot from memory.”

Her sight deteriorated and around 16 years ago she lost all vision in her right eye and most of the sight in her left eye.

“In my left eye, I sort of navigate around by light. If it’s bright outside I’ll sort of aim for the window or if it’s dark and the lights are on I’ll navigate by the light bulbs, like a moth.”

The problem with having no sight, she says, is that you also lose your confidence because you lose your mobility.

“I don’t go out and about on my own, ever. Then around the house, the kitchen, you rely on other people to find things for you – it’s very frustrating. It’s simple things like shopping…clothes shopping, you don’t know what you look like. It’s been, maybe eight years that I’ve had any sort of idea of what my children look like. And I’ve got friends now where I’ve got no idea what they look like. And I certainly don’t know how I’ve aged.”

In the summer, Rhian travelled to Oxford for an operation to implant a tiny 3x3mm chip into her right eye.

The device replaces the light-sensitive retinal cells in the eye, and is connected to a tiny computer that sits underneath the skin behind the ear.

When it is switched on using a magnetic coil applied to the skin, signals travel to the optic nerve and then to the brain.

Rhian still had an intact optic nerve and all the brain wiring needed for vision, but her mind needed time to adjust to the signals it was suddenly receiving after being dormant for so long.

She explains: “It was a bit nerve-wracking. I didn’t know what to expect.

“They sort of put the magnet to the little receiver there on my head and switched the receiver on. They said I might not get any sensation… and then all of a sudden within seconds there was like this flashing in my eye, which has seen nothing for over 16 years, so it was like, ‘Oh my God, wow!’ It was just amazing to feel that something was happening in that eye, that there was some sort of signal.”

One of the first tests the doctors did was to check if Rhian could now see flashing lights on a computer screen in a dark room – she could.

“What I was seeing was sort of a line at the top of my eye and at the bottom. But it was getting quite distracting because it was quite a slow flash really, so I asked them if they’d change the frequency. Now I’ve got more of a shimmer, rather than flashing lines, which is much less distracting and a little more accurate.”

Next they checked if she could distinguish white objects on a black background – a white plate on a black tablecloth – which didn’t go so well.

Rhian recalls: “I wasn’t quite sure where the plate was. So I left that day with sort of mixed feelings, because the flashing was working but I couldn’t see the plate on the table.”

She returned the following day to repeat the failed test.

“They did the objects on the table and I could get them and I was so chuffed, I must have looked like a kid at Christmas! I was just locating a plate, a cup and a couple of shapes, but it was difficult because I didn’t have any co-ordination. I haven’t seen anything through that eye for so long, so I kept overshooting it a little bit – but we were getting there. I was just elated, really elated.”

Next, it was time to go outside.

“I was absolutely terrified, because I didn’t know what to expect at all. And I was thinking ‘oh, I don’t want to let anybody down, I don’t want to let myself down…’ But as it turned out, it was great.

“There was a car, a silver car and I couldn’t believe it, because the signal was really strong and that was the sun shining on the silver car. And I was just, well, I was just so excited, I was quite teary!

“Being out in the real world, actually out in the street, you know, is far more useful, than locating flashes on a computer screen and doing the things in the lab. Just to walk under a tree and realising it’d gone dark was amazing, because I hadn’t had that.

“Now, when I locate something, especially like a spoon or a fork on the table, it’s pure elation, you know. I just get so excited that I’ve got something right. It’s really just pure joy to get something right, because I’ve never done it before – well, not for the last 16 or 17 years anyway.”

The surgical team at the Oxford Eye Hospital, John Radcliffe Hospital have been as delighted as Rhian with her progress.

Although the chip has the resolution power of less than 1% of one megapixel, which is not much compared to a standard phone camera, it has the advantage of being connected to the human brain, which has over 100 billion neurons of processing power.

Using dials on a small wireless power supply held in the hand, Rhian can adjust the sensitivity, contrast and frequency to obtain the best possible signal for different conditions as she continues to practise interpreting the signals and regaining her independence.

If the rest of the trial is successful, it’s possible that this implant could be made available on the NHS. The team also hope that one day this technology can be applied to other eye diseases, such as age-related macular degeneration.

You can watch her story on Trust Me, I’m a Doctor on BBC2 at 8pm on Wednesday 6 January.

Car Found In Search For Missing Ex-Eastenders Actress Sian Blake And Family

January 5, 2016

A car has been found by police searching for a former EastEnders actress who has gone missing with her two children.

Sian Blake, 43, played Frankie Pierre in the show between 1996 and 1997.

She went missing from her home in Erith with Zachary, eight, and Amon, four, last month. Her silver-beige Renault Scenic was found in Bethnal Green, east London, on Sunday.

Scotland Yard’s Homicide and Major Crime Command is leading the search.

Police said this was due to concerns about the family’s welfare, although they said the investigation continued to be a “high-risk missing persons” inquiry.
‘Increasing concern’

Officers also said they were concerned for the welfare of Ms Blake’s partner, Arthur Simpson-Kent, 48.

Ms Blake, who police said suffers from a “serious, life-threatening condition”, was last seen on 13 December in Waltham Forest, north-east London.

Mr Simpson-Kent has not been seen since 16 December when officers spoke to him at the family home.

Police said they did not know if the family was still together.

Scotland Yard said the Homicide and Major Crime Command (HMCC) was leading the inquiry and looking into whether the family may have been victims of a crime.

Det Ch Insp Graeme Gwyn said the couple and their children had been missing “for a considerable period of time” and police were growing increasingly concerned.

In particular, he said, police did not know if Ms Blake was “receiving the medication and treatment she requires to keep well”.

She was believed to have been in the London area and also has links to Cambridge as well as Colchester in Essex.

Ms Blake is about 5ft 2ins (157cm) tall, of slim build with short black hair, police said. She often wears glasses, but may use contact lenses.

Mr Simpson-Kent is a 6ft 2in (188cm) tall.

BBC Scotland Investigates: The Fight Of Gordon’s Life

January 5, 2016

I am watching this as I type.

Following Gordon Aikman’s battle with motor neurone disease, charting his fundraising attempts and campaign for better treatment.

DWP Sent Claimant Attendance Allowance Rejection Letter- The Day She Died

January 4, 2016

Royal School For Deaf Children Closes

January 4, 2016

Deaf children are being let down by the education system, with growing numbers of specialist schools closing and too many vulnerable pupils struggling in mainstream settings, according to campaigners.

The Royal School for Deaf Children in Margate, Kent, which was the oldest deaf school still operating in the UK, dating back to 1792, is the latest to close its doors after administrators were called in in December.

The closure comes amid growing concern about poor academic attainment among deaf children, who achieve considerably lower GCSE results than their hearing peers. According to the National Deaf Children’s Society (NDCS), 36% of deaf children achieve the government’s benchmark for five good GCSEs at A* to C compared with 65% of hearing children with no special educational needs.

Susan Daniels, NDCS chief executive, said the situation was wholly unacceptable. “Can you imagine a world where nearly two-thirds of children leave school without getting good GCSEs? Parents would rightly be furious that their child hadn’t been given the right support at school. There would be outrage and calls for urgent action.

“But when it comes to deaf children, this is the reality that we face. This is happening despite the fact that deafness is not in itself a learning disability.”

The attainment gap between deaf and hearing children without special needs widened from 39% to 42% between 2013 and 2014. Data on attainment among deaf children for 2014-15 will be published by the government in January.

“Even if there is a small improvement, it is likely that the majority of deaf children will still be failing to get five good GCSEs, which is totally unacceptable,” said Daniels.

“One of the reasons why there is such a wide attainment gap is that no one is held to account for how well deaf children are doing. Local authority specialist education services for deaf children play a vital role for many deaf children and their families.

“Despite their importance, there is no external scrutiny of how well they do. There is also no data on how well deaf children in different areas do. This is totally unacceptable. Why should parents of deaf children be given less information about the quality of education that their child receives?”

The number of schools for the deaf has fallen from 75 in 1982 to 21, with pupil numbers down by 15% in the past five years. According to the NDCS, almost 78% of deaf children are in mainstream education where there is no specialist provision, with 7% in mainstream schools with specialist provision.

“It is reasonable to assume that as technology improves more deaf children are now attending mainstream schools,” said Daniels, adding, however, that there would always be some deaf children for whom a special school would be the best way of meeting their needs.

“We do not advocate a particular model of education. We know that high-quality provision exists in all types of schools. We want to see excellent educational provision for deaf children whether that be mainstream or specialist provision.”

Parents and supporters of the Royal School for Deaf Children in Margate have launched a petition to save the school, which caters for 150 deaf children and young adults, some of whom have complex additional needs. Kimberley Carrara’s 11-year-old daughter, Sasha, is profoundly deaf. “When Sasha started at the school 18 months ago she had regressed so much that professionals said that developmental progress would be limited.

“Sasha has now grown into a lovely young lady and is thriving. We moved our family across the country so that Sasha could attend this school. If the school shuts she will not have a school that will meet her needs. We fear for her future.”

Terry Riley, chair of the British Deaf Association and a former governor of the Margate school, said: “These are children who have been marginalised by society for being unteachable. Yet, through the perseverance and dedication of the staff, parents and family, they had hopes. It is an extremely worrying situation for pupils and their families to see these hopes shattered.”

Mary Hare school in Newbury, Berkshire, is one of the 21 surviving special schools for the deaf, with 230 students in primary and secondary education, from all over the country, including a small number from overseas.

Like all special schools, Mary Hare has felt the impact of the trend towards greater inclusion, with deaf children increasingly being taught in their local schools. But the cost of placements at special schools is definitely a factor for cash-strapped local authorities, said Peter Gale, the school’s principal.

It costs £40,000 a year for a residential place at Mary Hare and parents often have to go to a tribunal to get their local authority to fund their child’s place. “What families tell us is that there are certain barriers to learning in mainstream schools that some deaf children are not able to overcome,” said Gale.

A pupil may be the only deaf child in their mainstream school; as well as the difficulties of background noise and large classes, it can be a isolating experience.

A Mary Hare student, Madeleine Molloy, was three years old when she lost her hearing. She doesn’t know why it happened; in the years since, she has accepted her deafness.

Now 15, with a cochlear implant, Maddy is bright, self-assured and articulate – she’s heading for good GCSE results and A-levels and wants to go on to university to study either law or fashion design. But she didn’t always feel like this.

“Before, I was in a normal mainstream school. For me it wasn’t good. Sometimes they work, sometimes they don’t. Before, I was a deeply unsociable person. I did not have friends. I was not outgoing. I kept myself to myself quite a lot.

“The way they were teaching me – I didn’t hear them. I didn’t understand them. Nobody was explaining or checking on me. Group conversations never worked for me because of the amount of noise.
Suddenly I’m teaching my child A-levels in the kitchen
Read more

“I felt like I was the dumbest person alive. I wasn’t going to pass my exams.”

Her parents realised she wasn’t thriving and an audiologist suggested it might be worth looking at a special school for the deaf. “I came here for a week and I absolutely fell in love with the school. I felt like I had finally found a place I could just be me. I didn’t have to crawl into my room and sit there and be quiet.”

Daniels said it is essential that mainstream schools provide effective social and emotional support to deaf children, as well as good peer support.

“Specialist schools play a crucial role in providing a range of education support for deaf children who for a variety of reasons do not thrive in mainstream schools. Local authorities are cutting back and deaf children are not getting the help they need to do well in the future.

“We urge the Department for Education and local authorities to work together to make sure there is still a future for all the deaf children who need specialist provision to thrive.”

Victoria Derbyshire Breast Cancer Diary: Hair Loss

January 4, 2016

BBC journalist Victoria Derbyshire has started losing her hair as a side-effect of chemotherapy treatment for breast cancer. She has decided to reveal she is now wearing a wig.

Derbyshire has been producing diaries since she was diagnosed with breast cancer at the end of July, to try to help demystify the treatment. Her third one was recorded across November and December.

Speaking on 1 December, she explains: “It’s now six days since the second chemotherapy session and I’m at the stage where I’m feeling a little dispirited.

“One of the things that I’m finding difficult to come to terms with is losing my hair. I would say I have lost about 30-50% of it.”

Derbyshire pauses, before taking off her wig to reveal a depleted head of hair, cut above the shoulders.

It is the first time the journalist has made this public. She takes a deep breath, and – with her voice breaking up – says in a quiet tone: “I am finding this hard.”

‘Disconcerting’

The potential hair loss, along with other side-effects of chemotherapy, was first discussed with her by an oncologist before her treatment began.

Different forms of chemotherapy result in varying levels of hair loss. Some do not cause any loss at all, or only slight thinning.

She was warned, however, that the adjuvant chemotherapy she would be having – designed to help stop cancer coming back or spreading to other parts of the body – usually leads to the loss of “all the hair on your head”.

For Derbyshire, this started two-and-a-half weeks after the first cycle of chemotherapy – a clump of hair falling out in the process of getting ready to go to a friend’s 40th birthday party.

“I was prepared for it – obviously it’s a side-effect of chemotherapy – but it’s slightly disconcerting nevertheless,” she explains in the diary, holding the hair to the camera.

She had worn a cold cap during her first chemotherapy session. Tightly fitted and so cold it forms ice inside, it was designed to minimise hair loss. She wore a newer, more advanced model in the second and third sessions – although the hair loss continued to a much lesser extent.

Find out more

Watch the full version of Victoria Derbyshire’s breast cancer diary online.

In the eight days that followed the second cycle, however – in which she “bounced back” and recovered from the treatment – she began to adjust to the hair loss.

“I have got used to wearing a wig, which is something I never thought I’d be able to say,” she explains on Christmas Eve.

“The idea a few weeks ago of wearing a wig absolutely horrified me. It represented stress, it represented something peculiar and not me. Now, I can put it on in five minutes in the morning.”

It is this practical aspect that has helped her come to terms with the hairpiece.

Between Christmas and New Year’s Day, she adds: “We went to a friend’s Christmas party the other day and when we got back my youngest son whispered to me and said ‘mummy, no-one would have known you were wearing a wig’.

“Maybe they did know and they were just too polite to say anything, but the point is it lets me crack on and get on with things – which is absolutely great.”

Cancer and hair loss

  • The effect of cancer drugs can range from mild thinning of the hair, partial or complete hair loss. Some do not cause any hair loss at all, including certain chemotherapy drugs.
  • Hair loss can be affected by the dose of drugs taken and an individual’s sensitivity to them.
  • Patients are advised to plan for potential hair loss, including whether they might wish to wear a wig, before treatment begins.
  • If hair does fall out, it usually begins two to three weeks after treatment starts and takes place gradually.
  • After chemotherapy, hair may take several months to grow back and is likely to be softer. It may come back a different colour and may be more curly than before. It is very rare for hair not to grow back at all.

Source: Cancer Research UK

Over the past month Derbyshire has presented her BBC Two programme while wearing a wig, but has not drawn attention to it.

Now, she now feels the time is right to be open both with colleagues and in public.

“When I started wearing a wig a few weeks ago I didn’t tell anyone at work I was wearing one, because I needed a little time to adjust to it myself. I can confirm I’m now fully adjusted to it and so feel comfortable in being totally open about it,” she says, smiling.

“But we are a close-knit team at work and they are a bunch of journalists so I’m guessing they’ve sussed it already,” she jokes. “If they haven’t, I’ll be a bit disappointed to be honest.”

Derbyshire, however, is keen not to downplay the emotional toll of losing her hair.

“It has been the thing that has affected me the most, more than a mastectomy,” she says, having undergone surgery in September 2015.

The presenter has three chemotherapy sessions and a series of radiotherapy sessions remaining before her treatment concludes in the spring. She expects more hair loss to occur and has started to lose parts of her eyebrows.

Hair loss, however, is almost always temporary, with hair growing back after treatment ends.

Derbyshire is certainly keeping this positive thought at the front of her mind. “Roll on 2016,” she says.

Maximus Has A History Of Disability Discrimination

January 4, 2016

Leka- The Light-Up Robot Ball Designed For Disabled Children

January 4, 2016

A robot that could help children with autism learn is to go on show at CES – the huge tech show in Las Vegas.

Leka is a motion-sensitive ball that can light up and roll around. Its makers are hoping to add a visual display and sounds to the robot too.

BBC technology desk editor Leo Kelion quizzed the company’s chief Ladislas de Toldi about how Leka could help children.

The Rise Of Disability Bodybuilding

January 4, 2016

Mention the word “bodybuilding” to most people and it conjures up a certain image: big men in small underpants, a comic world of posing, protein shakes and pumping iron. And in Pudsey Civic Hall, where the International Bodybuilding & Fitness Association (IBFA)’s Mr England championships are being held, that stereotypical view is out in force. First, Wakefield’s Steve Johnson, a former Mr Britain and a name on the bodybuilding scene, steps on stage; a man mountain in small Speedos, he flexes his muscles in the spotlight. From there, the flesh parade continues, all popping veins and rippling muscles, treading a fine line between deathly seriousness and cartoonish parody, as the junior category, followed by the over-40s, the over-50s and the men’s first-timers, all take to the stage in slivers of Lycra and fake tans the colour of Victorian sideboards.

The competitors, judges and the 200-strong audience, most of whom are bodybuilding obsessives, take it all very seriously. Then the next group of men step on stage: they have the same deep tans, muscles big enough and clothing small enough to make the average person wilt with embarrassment. But there’s something different about these four men that causes the applause to resound a little more loudly. This is the disability class of the Mr England competition, the first time this section of the contest has been held.

Standing at the far left of the stage is Mark Smith, a 30-year-old former Grenadier Guard who has muscles as prominent as the bright white smile he flashes when he contorts his body into a pose that showcases his biceps. Look below the waist and you’ll see one well-defined leg. On the other side, stretching from underneath his green trunks, a glistening metal leg is affixed near the hip.

Smith was a career soldier, having joined the army aged 18. Six months’ basic training at Catterick in North Yorkshire was followed by six months in London, completing ceremonial duties. As a 19-year-old based in the West End, Smith had his fun, guarding the royal palaces and participating in trooping the colour.

His first tour was to Bosnia, in September 2004, and he spent Christmas away from home. He didn’t mind much: “It was all new to me,” Smith says. “I was enjoying it, and the independence.” Two years later he was in Baghdad and Basra, the Falklands and Kenya. In 2009, he went to Afghanistan to serve on the frontline. After that, he was sent to Canada for pre-deployment training.

In 2011, he was acting as a safety staff member for a live-fire exercise with the Yorkshire Regiment in Canada. He was standing behind the wooden wall of a building where soldiers were practising clearing out a village of enemy fighters, when seven bullets hit his leg and shoulder. Smith had been in the wrong place at the wrong time. One bullet passed through an artery.

He was rushed to intensive care in a Calgary hospital, where he was resuscitated six times in a week, underwent a number of operations and had his right leg amputated above the knee. Stabilised, he was flown back to the UK, where his weight dropped to 60kg (9st 6lb) as he underwent more than 20 operations at the Queen Elizabeth hospital in Birmingham, watched over by his wife, Natalie, a schoolteacher, and his eldest son, Ellis, then just six months old.

It was during Smith’s 10-week stay in hospital that reality kicked in. “I was overly optimistic and naive when I had to have my leg amputated,” he says. At that time, he had just one goal in his head: to stay in the army, get back to where he was before, then climb up the promotional ladder, and even go back on tour. “I’d joined from school, so the army was almost all I’d really known,” Smith says. Now, he realised, things had changed. “Once my rehabilitation was done, that was my time in the army done.”

Smith had spent a decade in the military and had the drive and competitive spirit that come with a career spent dodging bullets. Physical activity had been a major part of his life, and suddenly he was faced with a life that looked entirely sedentary.

According to Ian Waller, operations director of Blesma, a charity for limbless veterans, Smith’s was a common experience. “To have done well in the military, soldiers will have had to have been competitive,” Waller says. “They’re fit young men and women, used to running, swimming, playing sport. That’s what you do in your downtime in the military. They want to continue with their life.”

Waller’s team have seen a huge increase in the numbers of soldiers needing support since the wars in Iraq and Afghanistan. “We’ve had 340 new injured veterans [since 2001], and support 3,600 in all,” he says. The increasing potency of weapons, including improvised explosive devices, coupled with medical advances, means 97 of that 340 are double amputees; a further 19 have lost three limbs.

Most of the veterans Waller works with go into cycling, rowing or swimming, but although Smith tried all these, it was bodybuilding that stuck. “I tried disabled sports,” he says, “and they weren’t quite filling that void. Bodybuilding was the one thing.” Smith has a theory about this: army life gave him routine and discipline – particularly in the Grenadier Guards. “Coming from quite a disciplined regiment, where everything’s about your turnout, your appearance, there’s a lot of routine, you’re physically fit. Bodybuilding is quite a similar lifestyle.”
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There was another reason he took up the sport: the family photographs taken during his recovery, when he was gaunt and pale. “I wanted to get as far away as possible from looking as ill as I did when I was in hospital,” he says. So he started training – hours each day, straining and making small improvements. Over the course of a year, he trained day and night, and ended up with a physique that could hold its own in the hypercompetitive ranks of bodybuilding. Training is intense, with 5am starts for 16 weeks before a competition, but Natalie has been an important source of support. “She just likes the fact that I’ve found something I’m passionate about now.”

There have been moments of doubt. Backstage at his first competition, in November 2014, Smith says, “I was thinking, ‘Do I really want to do this? Am I prepared to stand up in front of all these people?’” Everyone’s an armchair expert, he says, and their comments aren’t always discreetly made: they stand in the crowd, nitpicking over competitors’ muscle mass, picking up on the slightest imperfections. Still, he went through with it, and the reception was invigorating. He stepped off stage asking himself one question: when was the next one?

Since then, Smith has taken part in nine events, winning five separate competitions. He is the only veteran competing in the disability category at the Mr England championship.

The main stumbling block to his success so far? The strict diet. It’s not just counting calories: the food required to get a bodybuilder’s body is infuriatingly bland, all turkey and brown rice. It makes competitors crave something sweet, tasty and salty. Smith dreams of chocolate and peanut butter now, and will wolf down around £40 of Domino’s pizza when he gets home after a competition. But as he sits silently in a dressing room with a dozen other bodybuilders, many lying on the floor with their legs up on chairs in an attempt to drain the water that gathers in their calves, he’s running a fork through a Tupperware box full of dry chicken and couscous.

Sitting next to him is Josh Goodfellow, a rangy, outgoing 23-year-old who is busy engaging the others in conversation. Goodfellow has cerebral palsy, and is not walking well, in large part due to the torn hip flexor he sustained while competing in a Tough Mudder competition six weeks earlier. He’s been unable to work out since, and has lost nearly 9kg (19lb) in five weeks as a result. But he’s happy to be here, and pleased that today someone will be crowned Mr Disability England. “Fifteen months ago, this wasn’t a sport; it didn’t exist,” he says. He and Smith have taken it upon themselves to call British bodybuilding promoters – there are at least 10 in this factionalised world – and ask them to consider setting aside a section of each of their events for disabled bodybuilders. Some said yes, some said no. From no competition, there was one. Then last year, there were 20 events with disabled representation.

“We’re looking at it,” says Martyn Yates Brown, UK president of the IBFA. Barrel-chested and wearing a branded tie, he says there are challenges in admitting disabled athletes. “How do you compare and how do you compete? How do you make the criteria fair? The rules have to be written up: where do you put amputees, where do you put cystic fibrosis sufferers?” There are practical considerations, too: an extra category requires more time set aside during competitions. But it’s worthwhile, Yates Brown says. “We want to encourage people to compete. There’s nothing like getting people up on stage, getting that reception.”

 

One person about to experience that reception for the first time is Peter Copsey, a mountain of a man with a bushy beard, dark tan and prominent veins, who is stretching out with Smith and Goodfellow in an empty changing room. A former powerlifter, Copsey has been working out for decades – he’s 51 and has four children – but this is his first competition. He had never told anyone at the gym about his disability, spina bifida, until he read about Smith and Goodfellow on social media. Then something in him changed. “It’s taken all these years of hiding to realise that I had nothing to hide,” he says. “And that’s because I saw Josh and Mark.”

He started training, asked his wife to apply the requisite layers of fake tan, and entered the contest. “Now’s a good time for me to say, ‘Look, this is me. Here we are,’” Copsey says, after completing a series of push-ups. “And it’s nice that there are guys like this who I can talk to freely about my disability. It’s not the same for able-bodied bodybuilders. Don’t get me wrong – they go through the same amount of pain and prep – but with us… there’s added bits.”

The two men who inspired him are now swigging booze from bottles (every competitor is given a goody bag that contains a miniature bottle of Irish whiskey: it helps dehydrate the body, bringing out muscle definition, but it also gives much-needed dutch courage to men about to step onstage in bathing suits in front of a few hundred people).

Cardio is difficult for Smith. He can’t run around the roads near his home, so he walks before his children wake every weekday morning. (His second son, Ethan, was born in 2012.) Yet he can’t do two lots of cardio a day, a standard routine for bodybuilders: the sweat such exercise causes aggravates an exit wound near his groin. One summer, after overdoing the exercise, he ended up with a hole in his body through which you could see the tendons.

A man pokes his head around the changing room door as Smith, Goodfellow and Copsey pump up their muscles in the final moments before going on stage, holding their noses inches above the ground in press-up position. Lined up with a fourth competitor, Matthew Leake, the members of the disability category make their way on stage. There, they run through a series of mandatory poses, called out by a monotone voice. Straining, gurning and visibly sweating, the men turn their backs to the audience. Tattooed across Smith’s back is the closing couplet of William Ernest Henley’s poem Invictus: “I am the master of my fate, I am the captain of my soul.”

Bodybuilding involves months of dieting, weeks of preparation, hours of sitting around before a competition, and mere minutes of posing. The judges confer – and their decision is surprising. The winner today isn’t Josh Goodfellow, and it isn’t Mark Smith: Peter Copsey is Mr Disability England, at his first competition. Backstage, the losing competitors are gallant, shaking Copsey’s hand and chatting as they pack up their bags, praising him for the muscle definition he has honed over decades of work.

After Smith has glugged down a bottle of water and towelled himself down, he moves into the audience and spends the next half-hour talking to a former member of the Royal Engineers and a double leg amputee with whom he struck up a friendship at Headley Court, the Surrey hospital for the rehabilitation of injured veterans. The baby-faced double amputee is toying with the idea of competing next year, and is one of several ex-servicemen with whom Smith is in touch. Some send him photographs and videos of their work-outs, updating him on their progress towards peak physical fitness.

Smith is keen to see his two children, to let them play with the heavy Adonis trophy he got for coming second, and to tell them about the competition. But as he walks to his VW Touareg, ready for the long drive home to Milton Keynes, he pauses to sum up his day.

“To have inspired Peter not to hide his disability, to say proudly, ‘I’m a disabled bodybuilder’, that’s an achievement in itself. Obviously I’m disappointed, but to see Peter here today is just as much of a success. Hopefully more people will come out like that.”

For Smith, the goal is twofold: first, to establish disabled bodybuilding as a professional category, rather than an amateur one. That would in turn fulfil his second goal: to make a new career out of bodybuilding. “Within five years, I think we’ll be a professional category, and then you’re looking at an income,” he says, squinting into the sun.

There’s a hard road ahead, full of long drives, physical exertion and discipline. But compared with the journey that Mark Smith has already made since 2011, it doesn’t seem insurmountable.

Save the Royal School for Deaf Children

January 3, 2016

I’ve just signed this:

 

In January, kids across the country will be getting ready to go back to school, but hundreds of children and young people that I work with at the Royal School for deaf children in Margate face having nowhere to go next term.

Ours is the only school in the country for deaf children with complex needs. For 220 years this institution has been a lifeline for young people who face difficulties everyday and has enabled them to thrive.

Now the school is being forced to close down because the charitable foundation that funds us is faced with financial and legal difficulties. Hundreds of children and young people have lost their school and I am one of 340 staff members that have just found out we will loose our jobs- just days before christmas.

I have started this petition to ask the Department for Education to intervene and save our school.

I have seen first hand the wonderful work the school is doing with young people to provide them with a better future. Parent’s have moved across the country to bring their children here, and others travel for hours everyday to make sure that their child can go somewhere that understands their needs.

And we aren’t just a school, we are a community. Our lives are being turned upside down and the community we built is being torn apart. We urgently need something to change.

Public pressure has already helped us to get a meeting in Parliament. The government are starting to take notice, if people keep signing, if we keep making noise, we can save our school.

Please sign this petition and ask the Department of Education to ensure funding and support to keep this wonderful environment open to young people.

T In The Park Organiser Helping With Accessible Glasgow Gig

January 3, 2016

Geoff Ellis, the man behind T in the Park, is helping to organise a gig for disabled music fans in Glasgow.

ABLE2UK – The Accessible Concert 2016 – announced that Hozier, Kodaline and Prides would perform back in September.

But now Geoff Ellis has said he’ll help put the concert together, which is taking place at the O2 Academy Glasgow next Thursday.

The venue’s capacity has been increased for the event and there will be special facilities for disabled music fans.

Features at the gig will include an on-stage BSL signing interpreter, step free and enhanced access to the arena and toilets, a drinks service to the viewing platform so people don’t have to queue, blue badge parking and a hearing induction loop.

Gail Porter is hosting the event.

Founder and editor of ABLE2UK, Howard Thorpe, said: “The reasoning behind this event is to make venues and promoters aware that in some instances accessibility needs to be improved.

“The message behind Able2uk is just because you’re disabled you are still ‘able2’ do anything.

“In an ideal world we wouldn’t need to stage events such as these but unfortunately we do.

“I’ve been to some venues where there are no disabled spaces at all.

“Through this gig we want to spread awareness in the hope one day there’ll be no need to stage ‘special’ events.

“This gig isn’t just for disabled people though.

“It’s a standard Hozier gig with Kodaline, Prides and some amazing films throughout the night from A-list celebrities (including Mark Wahlberg) which just so happens to have improved access for those who require it.”

Tickets cost £27.50 with options including downstairs seating and standing, an accessible platform plus the balcony.

Hozier starts a UK tour at the end of January with three gigs at London’s Brixton Academy.

Kodaline play four concerts at London’s Shepherd’s Bush Empire in March.

Disabled Former Eastenders Actress Sian Blake Is Missing With Her Two Children

January 2, 2016

A woman who starred in EastEnders in the 1990s has disappeared with her two young children.

Sian Blake, 43, played Frankie Pierre in the soap and has gone missing from Erith in London with her children Zachary, eight, and Amon, four.

She was last seen on Sunday 13 December around Waltham Forest and police in Bexley, southeast London, think she may still be in the area.

Ms Blake appeared in EastEnders between 1996 and 1997.

She also has links to the Cambridge and Colchester areas.

Her family says it has received text messages from her, but she hasn’t been seen since going missing.

Her character appeared in 56 episodes and was a home wrecker who had an affair with Alan Jackson (Howard Antony) before telling his wife Carol (Lindsey Coulson) about it.

Sian Blake’s neighbour Sandra Metzgen said her family was “worried”.

“Sian has motor neurone disease and I think it has got worse,” she told the Sun.

“No-one knows where she is. She was looking very thin and frail and I think her mum was worried about that.

“She was in hospital for quite a while and whether her condition has progressed I don’t know.”

The Metropolitan Police is now appealing to the public for help finding her.

A spokeswoman for the force said: “We are increasingly concerned about her and her children’s well-being. We have exhausted all other lines of inquiry.”

Ms Blake is black, 5ft 2ins and slim with short black hair.

She wears glasses but can also wear contact lenses.

Anyone with information is asked to call police on 101 or Missing People on 116000, quoting reference 15MIS050346.

Matthew Parris Responds To Jane Campbell Today Interview

January 2, 2016

Yesterday I was privileged to be included in a Today programme guest-edited by Baroness Campbell of Surbiton. She grilled me on a column I’d written suggesting that life is not worth prolonging at all costs, and that any ageing society will in time question how much those wanting help should demand of those who must pay for it.

I found the interview difficult. Jane Campbell is very severely disabled. It would be wrong to use the phrase “kept alive” of so proactive and spirited a person as she, but the equipment, the help and the manpower necessary for her survival are elaborate.

Few would begrudge her this. I wouldn’t. As a lifelong campaigner for disabled people, she gives more than she gets. She helped me to understand that the “usefulness” of any life isn’t something about which we should throw out careless statements.

Careful statements, however, remain necessary. As the Christmas holidays end I invite you to cast your mind back a few days to that familiar festive figure, Ebenezer Scrooge. The flinty fictional curmudgeon has just bowed out for another year, to be put back in the stocks for our amusement next December.

A word, then, in Mr Scrooge’s favour. I respect his quiet heroism. He needs a better publicist than Dickens. “Bah! Humbug!” was never going to catch on; but if you can think of a snappier way of saying “the culture of victimhood could sink us all” then tell me. In the media and in politics we’re in danger of slithering, wet-eyed, into ruin, beneath the weight of uncosted proxy-generosity and political virtue-signalling. “Proxy” because it is other people’s money that ministers are being bounced into spending. Public sympathy is a dangerous driver of public policy.

Lady Campbell was interviewing me but I was tempted to interview her. She said later that there are 11 million disabled people in Britain. As the proportion of our population disabled by old age increases, the figure can only rise. The result — we see it already as our health service struggles — is that an ever-heavier burden falls on proportionately ever fewer wage-earning shoulders.

At present 45 per cent of citizens of pensionable age are classified as disabled. I tried to ask Lady Campbell whether she thinks there’s any limit to the giving/taking ratio: the proportion of younger workers’ earnings that must be taken for those whose incapacity makes them financially dependent on the state.

Perhaps, though, I was lucky not to be conducting this interview: or not with Jane Campbell. The baroness is not a self-pitying person but her physical condition speaks for itself. Imagine I were a politician — in charge, perhaps, of the Treasury purse strings. How could I stand before a woman who cannot stand, and tell her that the state can’t afford to support too many like her? I would have been booed out of the debate — or booted out of office — or “subjected to a torrent of abuse on social media”.

Yet hard cases make bad law, as Scrooge did not quite say. Somebody, though, has to. There’s an easy, lazy habit into which (especially) our news media and (particularly) the BBC have slipped during my lifetime. We make an identifiable, flesh-and-blood individual — a “victim” — the centrepiece of any report on questions of social policy and public spending. The victim — the social housing tenant whose elderly mother will be unable to visit if he loses his spare room; the flood victim who has lost everything; the mobility-impaired mother calling for buses adapted expensively to her needs — are presented as cases in point. They make appealing witnesses. The audience’s sympathies are engaged on the side of the victim.

A politician is then interviewed and repeatedly and aggressively asked what he or she is going to do about it, why they didn’t make provision for it, and how they can live with themselves in the knowledge of it. We may be given a picture of the politician’s own comfortable circumstances. The audience’s sympathy for the victim turns to anger against the politician. Nobody points out that it is not the politician’s own money the victim is asking for, but the audience’s.

Something approaching a media convention has arisen, that the interviewer or reporter doesn’t beat up the complainant, but only the politician. On the BBC’s Question Time panel I once contemplated asking a wheelchair-bound member of the audience who (to applause) was berating a (Labour) minister on the underfunding of the NHS, why she had been smoking in the car park twenty minutes previously — but I thought better of it, probably wisely.

The media interviewer who grills the politician on the government’s housing priorities wouldn’t dream of asking the social housing tenant why he doesn’t go to visit his elderly mother rather than demand the right for her to stay with him. I have yet to see a roving reporter interview the drunks clogging up an A&E department and demanding to know what right they have to prolong the wait of everyone else. To ask a flood victim whether they’d thought of the risk when buying a house on an estate that has flooded often before would seem below the belt.

The problem for our country is that while the “victim” the public meets is a real person, the arguments against making a hard case into a bad law are often theoretical. They turn on unintended consequences.

Unintended consequences of generosity in one direction are often stinginess in another; or an increase in public debt; or “moral hazard” (human beings’ tendency not to help themselves if they can rely on help from others); or the slow, almost imperceptible disabling of a national economy as tax burdens disincentivise work; or our loss of competitiveness in the world. Where are the real, flesh-and-blood victims of these horrors to be found and interviewed? They don’t even know who they are yet. The speculative plight of an unidentified future citizen is unlikely to moisten the eyes of a radio or television audience.

Still, I admire the politician or journalist to whom that individual is real. We need them. We need perhaps another Dickens, and a Ghost of Christmas not-to-come-for-a-century, to lead Scrooge to Tiny Tim’s cruelly overtaxed great, great, grandson; and hear Mrs Cratchit’s indolent great, great, grandaughter’s complaint that the NHS has refused a mobility scooter to her obese son.

We need, in short, a dash of vinegar in our politics this year. And here’s a guess: I bet the public secretly know it.

Baroness Campbell Guest Edited Yesterday’s Today Programme

January 2, 2016

Guest editor Baroness Campbell takes charge of the programme. Baroness Campbell takes a sceptical MP around the House of Lords, debates assisted dying with Matthew Parris and we investigate whether the suburbs are the true home of British creativity.

Donations Needed For ‘Independent Living Fighting Fund’

January 1, 2016

A message from Disabled People Against Cuts:

Independent Living Fighting Fund – donations needed now to support Disabled people hit by the closure of the ILF fight cuts to vital day to day support

DPAC is asking for donations for an Independent Living Fighting Fund to support individual Disabled people to challenge cuts to their social care support packages following closure of the ILF. The ILF campaigners fought fiercely against the closure, taking their protest right to the doors of the House of Commons chamber, exposing to the world the disgraceful way the UK government is treating its Disabled citizens. The Fund finally closed on 30 June but the fight is far from over. Disabled people hit by the closure need solidarity now more than ever as the cuts we all fought so hard to prevent start to kick in.

The government said the closure of the ILF was a transfer not a cut (http://www.theguardian.com/society/2015/jun/11/impact-of-changes-to-disability-benefits). This was a lie. Some notable Councils such as Hammersmith and Fulham have committed to protecting people’s support packages in the short-term but in other areas serious cuts are already starting to happen as former ILF recipients are re-assessed to determine the level of social care support their Local Authorities will continue to fund. In Waltham Forest for example nearly 90% of former ILF recipients have had their support package cut as a result of the closure of the ILF, with more than a quarter having a cut of 50% or more (http://www.disabilitynewsservice.com/independent-living-fund-shocking-drop-in-support-after-ilf-closure/).

Cuts of this level mean robbing Disabled people of independence, dignity and equality. It also places people at risk as tragically evidenced by the case of Amanda Richard (http://www.dailymail.co.uk/news/article-3266218/Disabled-mother-died-house-fire-24-hour-care-cut.html) who died in a house fire in Coventry after her support hours were cut. Forcing use of incontinence pads on Disabled people who aren’t incontinent is emerging as one common tactic, as is blanket removal of night-time support and increasing expectations on, often elderly, family members and neighbours. One former ILF recipient was told that if she wanted to continue attending her community choir, other members of the choir could assist with her physical needs in place of needing paid support hours. The reassessment of another made a recommendation for behaviour therapy in order to cope with the removal of their night-time support following closure of the ILF.

Disabled campaigners warned that the closure of the ILF signalled the end of independent living for Disabled people. Local Authority administered care and support has proven itself unable to consistently provide Disabled people with adequate support to live, work and study in the community with the same chances as non-Disabled people. The current crisis in social care funding means things are only getting worse as Councils consult on further cuts to community support (http://www.disabilitynewsservice.com/council-is-trying-to-push-through-care-cuts-without-proper-scrutiny/), meanwhile investing in the building of new ‘super care homes’ to house Disabled people en masse (http://www.disabilitynewsservice.com/threat-to-independent-living-as-council-plots-raid-on-high-cost-care/).

Having lost the legal challenge to quash the decision to close the ILF it is now imperative that support is available for each former ILF recipient at risk of cuts to essential support. There are a number of dedicated solicitors committed to providing legal advice, however changes to legal aid mean that some Disabled people are no longer eligible yet not in a situation where they can fund the legal action they need to challenge what is happening. It is also true that we cannot reach every former ILF recipient affected and we also know that many are too frightened to speak out for fear of losing what support they have got. Legal challenges are an important way of testing out the rights of former ILF recipients under the Care Act 2014 and making examples out of Local Authorities that are not meeting their legal duties.

This is why we need a fighting fund available to support legal challenges by former ILF recipients not eligible for legal aid.

What you can do:

  • Donate to the fighting fund. We have cases that need to be actioned in early January so the sooner you can give the better. To donate go through DPAC’s paypal or contact us via mail@dpac.uk.net for details for a BACS transfer. Include “ILF FF” as the reference.
  • Circulate this post to your friends, family and fellow campaigners asking them to donate too.

Congratulations Lucy Watts MBE!

December 31, 2015

Lucy Watts, 22, from Benfleet, Essex, wants to use her MBE to highlight the lack of services for young adults with disabilities and life-limiting conditions. Watts, who has the genetic disorder Ehlers-Danlos syndrome with life-limiting complications, writes a blog called Lucy’s Light, and is an advocate with health and social care services for other young people with disabilities.

She made a plea for more young adult hospices: “There are children’s hospices and adult hospices, but not many young adult hospices, and their needs are completely different.”

Of course, Same Difference also extends sincere congratulations to all other disabled people and carers on the New Years Honours list. We wil go through the list in detail in the next few days and highlight as many as we can find.

2015: The Disability Year In Review

December 31, 2015

2015 The Disability Year In Review

January brought us Alan Barnes and Katie Cutler,
A girl with a heart of gold and a man who’s not a butler

February brought us Kill Me Now,
A story of a disabled boy that raised many an eyebrow

March brought us a celebration of inclusion
Disabled children in mainstream schools- these days it’s a fusion!

April brought us manifestos in preparation for elections
Disabled people prayed the public would make the right selection

May brought us a song called Sack Esther McVey
It did its job, but the Tories must stay

June brought us the end of the Independent Living Fund,
So much more than money, but nothing more could be done

July brought us a whole season on disability,
Let’s have another one, please, BBC Three

August brought us fake stories of joy,
With the DWP’s processes, from a girl and a boy

September brought us an amputee model,
That no one noticed- a hijab stole the show- oh well

October brought us the sad death of Stephen Thomas
A photo once won him a prize, this memory the disability world still has

November brought us Christmas cards and Masters degrees
Achievements of two people who’ve lived with CP

December brought us some JobCentre madness
They said grandads aren’t immediate family, and our hearts filled with sadness

Sky Bill Cancellations For People Affected By The Floods

December 30, 2015

Long Wait For Accessible Local Authority Housing Says Charity

December 29, 2015

There has been a marked increase in waiting times for disabled people looking for accessible local authority housing.

The Leonard Cheshire charity says the number of those waiting for a home has risen by 7% in the last five years, with some on the list for up to 12 years.

The government says it plans to build 8,000 homes for disabled and elderly people in England, but campaigners say far more are needed.

Disability Correspondent Nikki Fox reports.

Will Claimants Be Sanctioned Because Of The Floods?

December 29, 2015

We at Same Difference have been watching reports of the recent UK floods with shock and sympathy for the people affected. We urge disabled and elderly people to take care in the extreme weather.

But we didn’t think there was any further disability link in the story, until we spotted this on Facebook:

It was then that we recalled an FOI request from last year, which revealed that benefit sanctions could apply if bad weather, including snow, prevented claimants from getting to jobcentres.

Readers, we urge you to share this post as widely as possible. We would like it to reach every MP and Government Minister.

We at Same Difference  believe that no one should be sanctioned because extreme weather prevents them reaching jobcentres, or searching for jobs because their electricity is cut off. We would like to see every MP, including Government Ministers and David Cameron, stepping in to ensure that no benefit claimant is sanctioned as a result of the floods.

PIP Leaves Disabled Couple Isolated At Home In Plymouth

December 28, 2015

A disabled man from Plymouth who has had his benefits slashed will no longer be able to afford his mobility vehicle which he relies heavily upon to get to work.

Tim Hill who has suffered from scoliosis since birth can’t walk without assistance.

Tim uses the vehicle to get from his home in Leigham to his job in Dartmoor, but with the large cut to his Personal Independence Payment the car will be taken from Tim in the coming weeks as he simply cannot afford to stump up the extra cost needed to keep the car.

Whilst also holding down a job at the Two Bridges Hotel in Dartmoor, Tim was a part time carer for his disabled wife Michelle, who has to use a power wheelchair to get around.

 

But since he received the letter from PIP six weeks ago telling him that his benefits were to be reduced he has had to be signed off from his job due to depression.

“All aspects of our lives will be affected by this” the 44 year old said.

“It’s devastating to think I might have to give up my job.

“Even if I could get a bus it would only get me as far as Yelverton with no way of getting out to the hotel.

“And since Michelle finds it very hard to use public transport with her wheelchair, its going to be very tough.

“We’ve managed to live independently as a couple together and that’s going to change now.

“This doesn’t just affect my independence, it affects my working career too.”

Tim has been in work for 27 years and has worked as a guest liaison for Warm Welcomes at the Two Bridges for 13 years.

Changes in the benefit payment Tim receives come from PIP replacing the Disability Living Allowance, meaning Many people on DLA would qualify for PIP but it was possible that applicants could get a lower rate than before.

The Grimspound Close resident had to attend a meeting with PIP representatives to be assessed for his benefits, and feels the questions he was asked were “cleverly worded” which he claims “have condemned him in the eyes of the law.”

Tim was asked if he could plan a journey, and feels that most people, disabled or not have the ability to plan a journey.

Tim said: “In the eyes of the law, if you can get from A to B maybe using a bus pass or a taxi which would be very expensive, it means you don’t necessarily need your mobility aid.”

The couple have had to bring in a personal assistant to help with enabling Michelle at home, which has further added to Tim’s depression diagnosis.

Jared Lothian, general manager for the Two Bridges said: “It would be a great shame to lose Tim.

He is a well known and well loved character; he always gets the most Christmas cards from guests and staff.

“We will try and help Tim in any way we can to try and ensure he can stay with us at the Hotel.”

In a bid to change his mobility entitlement, Tim has contacted Plymouth’s Conservative MP Johnny Mercer to see if anything can be done.

A representative for Mr Mercer informed The Herald that conversations are ongoing with Mr Hill regarding his situation.

Can Ballet Help Parkinson’s?

December 26, 2015

It is a disease characterised by tremors, slow movements and stiff muscles – but new research has found an unusual method of easing the symptoms of Parkinson’s.

Academics from the University of Roehampton have found that ballet can have significant physical and emotional benefits for patients.

Jayne McCubbin joined a class in Liverpool to see the effects.

Something Accessible To Sing Today…

December 25, 2015

Sing to the tune of Oh, Christmas Tree. Season’s Greetings!

Oh wheelchair, oh wheelchair,
How comfortable is your seat?
Comfortable it will always be,
Through winter snow and summer heat
Oh wheelchair, oh wheelchair,
How comfortable is your seat?

Oh walking frame, oh walking frame,
You are the thing most loved
How often you give me delight
When you help me walk into the light
Oh walking frame, oh walking frame,
You are the thing most loved

Oh standing frame, oh standing frame
Your bright red paint will teach me
That standing still will always be
The way to joy and peace for me
Oh standing frame, oh standing frame
Your bright red paint will teach me

Oh white stick, oh white stick,
What independence you provide
You help me walk out on the street
Standing on just my own two feet
Oh white stick, oh white stick,
What independence you provide

Oh guide dog, oh guide dog,
You are my own beloved pet
You tell me where I need to go,
When I’m in danger, you always know,
Oh guide dog, oh guide dog,
You are my own beloved pet

Oh hearing aid, oh hearing aid,
You are my source of volume
I turn you on, for something which,
I want to know, then I flick your switch
Oh hearing aid, oh hearing aid,
You are my source of volume

Oh Blue Badge, oh Blue Badge,
Where would I park without you?
No matter where I want to go,
I have three whole hours, I know
Oh Blue Badge, oh Blue Badge,
Where would I park without you?

Man In Wheelchair Robbed At Knifepoint In Durham

December 23, 2015

Durham Police have revealed details of a shocking robbery, in which a man in a wheelchair had a knife held to his throat.

The victim, a keen photographer, was on the banks of the riverside in Durham City near to Durham Rowing Club, adjacent to South Street, on Monday 14th December. . He was using a camera to take pictures from his wheelchair, which he has to use due to mobility issues following a stroke.

He was moving to his next point of interest when he was approached from behind by an unknown man.

This person then reached around the neck of the victim, held a knife to his throat and demanded his phone and wallet.

He then took the phone and escaped along the riverbanks towards Durham city centre.

“If you know of a man matching the brief description, possibly living rough please get in touch. Or if you happened to be in that area last Monday and saw anything suspicious or unusual. This type of incident is very rare in Durham and the victim has understandably been left very shaken. Please call police on 101 if you have information which may help.

– PC Chris Anderson, Durham Police

Lily Grace Hooper ‘Forced Out’ Of Hambrook Primary School After Online Campaign

December 23, 2015

Seven-year-old Lily-Grace Hooper made headlines earlier in the year when her school banned her from using a walking cane – because of health and safely concerns. 

The girl, who has been virtually blind since she suffered a stroke aged four, was told by education chiefs that other children and teachers could trip on her fibreglass walking cane.

The decision by Hambrook Primary School was widely condemned after it hit headlines in mid-November – but some parents and teachers voiced their support for the school on social media. 

Now Lily-Grace’s mum says a “bullying campaign” has forced her daughter out the school. 

Dozens shared photos of their children at the school and wrote posts defending the ban using the hashtag #happyathambrook.

Supply teachers, a lunchtime supervisor and a school governor have all shared posts using the hashtag on Facebook, Twitter and Instagram. 

But Lily-Grace’s mum Kristy Hooper, who works at the school, said the scale of the pro-school response meant she felt “victimised” and that her daughter was “no longer welcome” at the South Gloucestershire school.

Hooper, 38, a mum-of-three whose two teenage sons also went to the school, claimed Lily-Grace was being punished because of the dispute.

She says her daughter is not going back to the school but will start at another local primary, which has offered to accept her, in January.

She said said: “It’s just awful.

“So many members of staff and parents who I thought were my friends have shared these posts defending the school.

“I think they are totally missing the point. This is about a small child who is vulnerable. it is about her being able to use a walking cane which gives her independence.

“I’m just flabbergasted as to why so many people can’t see that. It’s the main reason I’m taking Lily-Grace out of the school.”

Despite the Health and Safety Executive rubbishing the assessment’s findings, attempts at reconciliation between Lily-Grace’s mum and the school have broken down.

“I just feel so sorry for Lily-Grace because she has had to miss school,” said Hooper. She missed the nativity and the carol service and I feel awful about that.”

Hooper, who has been signed off work because of stress brought about by the cane drama, has also instructed solicitors to sue the school for discrimination.

Hambrook Primary School are yet to respond to requests for a comment.

South Gloucestershire Council said: “The local authority is continuing to work very hard to ensure that Lily-Grace’s education continues successfully.

“We remain in close contact with Lily-Grace’s mother to ensure that appropriate arrangements are in place for Lily-Grace’s education.” 

Nine Year Old Boy First In UK To Freeze Testicular Tissue

December 23, 2015

Nathan Crawford, from Cornwall, needs chemo and radiotherapy for an inoperable brain tumour. However, there is a possibility that the treatment might leave him infertile.

So he has become the first in the UK to have testicular tissue frozen, so that he might have a chance of having his own child when he is older.

Readers, I wrote in detail on a similar case, that of the Jarvis family, in 2011.

My views on these topics haven’t changed. My personal view is that a nine year old child is too young to make decisions like these, and decisions about having a family of his own.

Also, the BBC does not reveal whose decision the freezing of tissue was. If it wasn’t the boy’s own decision, then my personal view is that it should not have been made for him. No doubt, his parents, if they didn’t consult him in making this decision, made it out of love and care for their child. But a decision this big, in my personal opinion, should not be made unless it is made, with full understanding, by the person themselves.

Surely, the family’s first priority is to save their son’s life, or extend it for as long as possible? If he is left infertile by the cancer treatment, surely solutions to that can be found once he is old enough to understand them, and to consider having a family?

Even if this means that his own family is not biological, adoption and fostering will still be options open to him when he is old enough to consider them. Since he is only 9 now, it is not unreasonable to think that IVF techniques will be far advanced by that time, too.

Readers, had Nathan Crawford been 16 or 18, I would have felt differently. However, in my personal opinion, making fertility procedures available to children is not a ‘positive step forward.’ It only forces children to think about things they are not yet ready to understand, and it is simply unnecesary.