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‘Hundreds’ Seek Private Clinics For Medical Cannabis

August 19, 2019

Hundreds of people in the UK are turning to private clinics for medical cannabis, BBC News has been told.

Since its legalisation in November 2018, there have been very few, if any, prescriptions for medical cannabis containing THC on the NHS.

And this has led some patients, with conditions such as epilepsy and MS, to pay up to £800 a month privately.

The government said it sympathised with families “dealing so courageously with challenging conditions”. Image caption Cheryl Keen says it is “disgusting” some patients have to seek private help

Cheryl Keen has been trying to get medical cannabis on the NHS for her daughter Charlotte – who has brain damage and epilepsy – but has been refused twice.

And she had been told it was too expensive and she had not yet tried all the other available options, she said.

“Nothing has happened, nothing has changed [since the legalisation],” Ms Keen told BBC Two’s Victoria Derbyshire programme.

“It’s absolutely disgusting that anyone is having to pay to go private,” she added – something she cannot afford to do. Image caption Charlotte has twice been refused medical cannabis on the NHS

Campaign groups say by not prescribing cannabis medicines with THC, the NHS is limiting treatment options for patients.

A review earlier this month by NHS England, however, highlighted a lack of evidence about the long-term safety and effectiveness of medical cannabis.

NICE said it was unable to make a recommendation about the use of cannabis-based medicines for severe treatment-resistant epilepsy “because there was a lack of clear evidence that these treatments provide any benefits”.

And this has led to the introduction of private clinics.

Grow Biotech, which handles about three-quarters of all medical cannabis imported into the UK, said as of July it had received more than 100 requests for private prescriptions – of which about 60 had been fulfilled.

The new London branch of The Medical Cannabis Clinics has not yet opened but said it had 162 patients on its waiting list – with conditions such as epilepsy, Parkinson’s, post-traumatic stress disorder (PTSD) and fibromyalgia.

“Everyone can get an appointment to come here but not everyone leaves with a prescription for cannabis,” its director, Prof Mike Barnes, said.

“There are some conditions for which there is good evidence for cannabis to be useful, so you’d have to have one of those conditions – like pain, anxiety, or nausea and sickness in chemotherapy or epilepsy.”

The clinic says consultations are carried out to ensure prospective patients have tried all reasonable licensed medication for their conditions and reached “the end of the road for treatment”.

Prof Barnes described the service as a “lifeline for patients in need”.

Prescriptions cost between £600 and £800 a month but Prof Mike Barnes rejected any suggestion the clinic was exploiting patients.

“This is the only way patients who are in significant need can get access to this medicine,” he said.

Government ‘failing patients’

A report last month by the Health and Social Care Committee said the hopes of patients and families had been unfairly raised when doctors were allowed to prescribe cannabis.

Labour MP Ben Bradshaw, who sits on the committee, told BBC News the government was “failing patients”.

“If anything [since its legalisation], it’s become more difficult for people to obtain it,” he said.

“[The government] now has to put this right, by delivering on the promises that it’s made to the patients.”

The Department of Health said in a statement: “To support doctors prescribing these products, we have asked the National Institute of Health and Care Excellence (NICE) to develop additional clinical guidelines and are working with Health Education England to provide additional training.

“The decision to prescribe unlicensed cannabis-based products for medicinal use is a clinical decision for specialist hospital doctors, made with patients and their families, taking into account clinical guidance.”

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Zubee Kibria On Getting A Job With CP

August 19, 2019

It took me just under two years to find my current job as an events and administration assistant at a disability organisation. It wasn’t for a lack of trying. I was born with cerebral palsy and while I try not to let it get in the way of achieving my goals and aspirations, finding another role has not been easy.

I do feel that having a disability is a barrier to getting a job. I’ve applied for numerous positions over the years and it’s been rejection after rejection. It’s been very difficult to deal with, but I never gave up. Saying that, I haven’t sat idle – I’ve been volunteering for Disability Horizons, an online disability lifestyle magazine, for the past seven years.

In June I was so happy to have started a part-time job, working 17 hours a week spread over three days. My salary is £23,000. I’m enjoying it and slowly getting back into the routine of going into an office. My role involves assisting colleagues with organising and planning events, ensuring that all the logistics are in place. Advertisement

I have a real passion for events and have experience, voluntary and paid, planning and organising events such as fashion shows, coffee mornings, parties, meetings and conferences.

I’m in the process of setting up a company that works with businesses to make events more inclusive for disabled people. Attending them has made me realise that not all businesses know how to cater for everyone.

Last year I attended a fashion show which had really long queues to get in and when I did get in, there was no accessible seating for wheelchair users. Organisers need to ensure disabled people don’t have to queue for a long period; they should be given priority access.

This year I’m planning to launch Access My Events to give disabled people the opportunity to enjoy events. I’ve wanted to set up a business for a long time but faced hurdles to get to where I want to be.

I live with my parents and three sisters and one brother in Shepherd’s Bush in London. To be honest, my parents do everything for us all, but I do contribute about £80 a month to rent. I regularly go to an all-ability cycling club, which is free, and I attend a local gym that runs free activities for disabled people.

Due to my disability I have to take a taxi to work and back, which costs about £25 each way. Usually this would be funded through Access to Work (a government programme aimed at supporting disabled people to take up or remain in work) but at the moment I’m having issues getting the funding as I wish to use a particular cab firm that I use regularly. I am having to pay out of my own pocket until funding is approved. Sometimes I have to spend money on cabs separate to work. It can cost anything between £15–£20 depending on where I am travelling to.

I love holidays. Earlier this year I went on a pilgrimage in Saudi Arabia and then on to Pakistan to visit family with my parents. It set me back about £600, plus other expenses. I also love technology exhibitions as I’m really into tech.

Exhibitions tend to be expensive, but if there is anything I like I make a note of it and purchase it from a store for cheaper.

It feels great to be earning after a very long time and having that independence. Although I don’t look too far into the future, I would love my own place that’s adapted to my needs and where I can be as independent as possible. That would be really nice.

Career-wise, I’d like to focus on my company and grow a network of businesses to work with. I’m keen to make inclusivity a staple part of organising an event. I want to work to make a difference for other disabled people through my work, both paid and voluntary.

Sunflower Lanyards

August 16, 2019

Newsround has this useful article on sunflower lanyards, which signify hidden disabilities.

Does CBD Oil Help Anxiety?

August 15, 2019

Natalie, who has bought a bottle of Cannabidiol (CBD) oil online, has a few questions she wants answering before she decides whether to take it.

On this journey Natalie meets a hemp farmer, a scientist and tests the product at a laboratory.

CBD products, which are made from a cannabis extract, are very popular but currently there is no specific regulation about their production.

Purposeless Movements By Robert Softley Gale

August 14, 2019

Becoming a parent for the first time can be nerve-racking for anyone. Knowing it will be twins, the more so. But when your own mother has died in childbirth, the trepidation is intense. “The only birth I’d been at was my own and that all went pretty horrifically wrong,” says Robert Softley Gale. The day after his boys were born, “I was like, ‘Wow! I can do anything!’ That whole reclamation of birth, that it can be OK, felt so important.”

Fatherhood is the latest twist in a heady 18 months for the theatre-maker. At the start of last year, his company Birds of Paradise had its funding cut by Creative Scotland, a decision so bizarre it was hastily overturned. After that low, Softley Gale who has cerebral palsy – a consequence of his traumatic birth – scored one of the big hits of the 2018 Edinburgh festival with My Left/Right Foot – the Musical, a collaboration with National Theatre of Scotland that he wrote and directed.

Then, at the end of the year, Softley Gale split up with his husband (“We get on better now than we did before”) and in June, having met Pauline Cafferkey through a co-parenting website three years ago, he has become the beaming father of two boys. Both Softley Gale and Cafferkey wanted to be parents, neither wanted to go down the surrogacy route, so they opted to bring up the children together. “It’s me as a single guy and Pauline as a single woman getting together and having babies,” he says.

Oh, and this month, he’ll be making his debut at the Edinburgh International festival.

This is characteristic of a man for whom defying the odds is a personality trait. “What are the options?” he says. “You either go out and do the things you want to do or you don’t. My attitude has always been, ‘How do I make this happen?’”

Having overcome obstacles all his life, he is not about to stop now. “What I’ve heard from other parents is they’re all trying to work it out. No one knows what they’re doing, so it doesn’t feel that different to me. Obviously, there are practicalities: I got a new car four weeks before we found out it was twins and if I’d have known at that point, I might have got a bigger car for two car seats, a double pram and a wheelchair. But I’m so used to having to work stuff out that it’s not a big deal.”

He laughs when he remembers being approached by a stranger outside the Theatre Royal, Brighton, where My Left/Right Foot was playing earlier this year. “I must tell you,” they said, “the play in there is really good.”

“I said, ‘Great, thank you, I’ll give it a go.’” Despite it being a show that satirised the appropriation of disabled roles by non-disabled actors, few assumed someone with cerebral palsy might have staged it. That he did – and so well – feels like a step forward. Take the young woman who came up to Softley Gale during the initial run. She had just watched an uproarious comedy but was in tears. “I asked to study drama at school,” she said. “But they told me I couldn’t because I was disabled.”

“There is a real purpose here,” says Softley Gale. “‘Role model’ is a weird phrase, but letting people see that it can be done is very important.”

Now, the experience of fatherhood will feed into Purposeless Movements, a dance-theatre piece in which he turns the involuntary gestures of cerebral palsy into choreography. Revived after a short tour in 2016, it features four men reflecting on how the condition “affects their lives, their gender, their masculinity and their movement”. Because of the contribution of actor Laurence Clark, a self-styled “irresponsible father”, the show had already touched on parenthood, a theme that is likely to develop in this latest run.

“It’s even simple things like holding the babies,” says Softley Gale. “They were born four weeks early so they were pretty small. I thought, ‘With my great clunky hands, how am I going to hold them? Am I going to hurt them?’ But it’s a concern every parent has. For me, the choice was, either I’ll never hold them and they won’t get any bond with me – and what’s the point in that? – or I hold them and there might be a small risk. The way to avoid risk is to never have any contact with anybody. Every relationship is a risk, but we do it anyway.”

• Purposeless Movements is at the Studio, Edinburgh, 19–24 August.

Over Half Disabled Students Haven’t Heard Of DSA

August 14, 2019

Confusion over what is meant by disability, and poor awareness of a widely available fund, has led to 60% of eligible students missing out on financial support at university.

With A-level results due out on Thursday, thousands of young people will soon be deciding whether to take on the expense of a university education. For those students who are disabled and have additional access requirements, university could prove much more expensive than average, perhaps prohibitively so.

A report from the Department for Education in England, released earlier this year, revealed 60% of eligible students had never heard of Disabled Students’ Allowances (DSAs) – which could make attending university more achievable.

The long-established UK-wide fund can provide up to £30,000 for support including assistive computer software, transport, mentors or British Sign Language interpreters.

Many believe DSAs need better promotion in schools so that they are taken up by more students who do not realise their access needs can be met.

Only 13% of those who received DSAs had been informed about them by their school or college, according to the report.

The Department for Education says it is trying to let more people know about the fund.

“The Student Loans Company already include information about the allowance in information packs about student finance and we are considering how best to improve awareness, including among school staff,” it says.

And it seems that the advice given by some schools and colleges has been counter-productive.

Matthew has been diagnosed with anxiety. When he applied to study forensic science at De Montfort University, staff at his college advised him not disclose his mental health difficulties on his university application to avoid any prejudice. So he didn’t. Image copyright Matthew / Linsey Scott

“I was told by one of the staff, it would make my application lesser,” he says.

College for Matthew had been challenging – anxiety made it difficult for him to focus and he struggled to talk to people.

Ignoring the advice he had been given, Matthew mentioned his anxiety during a visit to the university and was encouraged to apply for a Disabled Students’ Allowance – which he hadn’t known about. He received support by the end of his first term.

When Rose Ann applied to study French and German at the University of York her school also failed to advise her of DSAs.

At the time she had been managing an eating disorder – which the school knew about.

“I didn’t really realise that DSAs included mental health so I didn’t actually apply,” she says. “I had a year out, because I was in hospital, and during that year I had a friend who had mental health problems and her school told her she could apply – so that’s how I knew about it.”

The system relies on students first knowing about DSAs and then completing a form with details of their needs – which can be hard to admit at an age when young people are striving for independence.

Rose Ann admits she was “sceptical” about disclosing her mental health difficulties.

“I wanted to be independent. I thought, ‘I’ve gone through school without getting support so I might as well do that at university too.'”

Later, after receiving a diagnosis of autism, she felt moved to apply and received funding for a laptop and a study skills tutor.

“Having a mentor got me on to the next stages of my recovery,” she says. “I’m not sure I’d have got through uni without it.”

Tina Sharpe, the Disability Services Manager at De Montfort, says thousands of students are let down every year by a lack of support and awareness. Image copyright Tina Sharpe

“Disclosure is the big stumbling block – 60% of the problem,” she says. “The ones that don’t disclose, because they think they’ll be discriminated against, slip through the gaps.”

The Department for Education has sympathy, but says disclosure is the only way of getting financial help.

“We know that students may find it difficult disclosing their disability however, without students declaring, we are not able to know if a student would be eligible for support,” it says.

After disclosure, Tina Sharpe believes the other main barrier to getting DSAs is completing the application itself.

“It’s a disjointed process. They have to send off medical evidence, then there’s an assessment of needs – and they’ve got to make that booking to be assessed, it’s all reliant on the motivation of the student.”

Sharpe says leaving the application to students could be seen as empowering, but she is concerned the procedure is too complicated. She believes students should be steered through the process with universities having more control.

“The liaison between schools, universities and colleges need to be better – they’re under a lot of pressure but it needs to be done, somehow.”

I have depression, what support might I get at uni?

  • A specialist mental health mentor to talk to on a regular basis
  • Text-to-speech software. Some people with depression find their memory and concentration may be affected, so this can help.
  • Mind map software. With thoughts all over the place and ideas pinging into your mind – this software keeps information and notes organised in chunks.

 

The government accepts the report’s criticism that the application process for DSAs is demanding. The report found that 31% of young people found the application difficult, while 32% found it hard to source medical evidence.

Making phone calls and attending meetings and assessments can exacerbate anxiety for some people, especially for those with learning or communication difficulties.

Rose Ann found it difficult. Her anxiety increased at the thought of not receiving funding. She describes it as a “stressful process”.

Nearly 60% of applicants also have to pay for a doctor to provide evidence. If you have more than one condition you may incur multiple charges, typically starting at about £18.

The report also revealed that those with mental health problems are most likely to have to fork out money.

When Phoebe, from Exeter, applied to do film studies at De Montfort using the online form, information about DSAs popped up. She tried to fill it in with details of her depression, but she says she found it such a “grey area” she gave up.

“It was like ‘Am I allowed it?’ and that put me off. With mental health you need evidence. I had to write to my doctor and he was quite slow with replying. It was an anxious process as I didn’t really understand the application – so I left it.” Image copyright Phoebe

Phoebe got on to the course and moved to the university in Leicester. Once there, she found social situations overwhelming.

Soon after term started she received a diagnosis of autism and was encouraged by the university to apply for a Disabled Students’ Allowance. She found having a firm diagnosis made all the difference when putting together her application.

“It’s set in stone,” she says. “Anything with mental health – you have to chase a lot.”

Phoebe’s DSA provided a printing allowance to reduce the anxiety of going to the library to do it, a study skills mentor to help her keep on top of work and a mentor who she sees once a week.

“We get along quite well and I don’t have to hide the traits or the person that I am, so I can be free – it doesn’t matter if I play with my hands or fidget.

“I don’t think I would have been as healthy in dealing with university without my DSA”.

A phone app called Brain in Hand is one of the newer support mechanisms which those who receive Disabled Students’ Allowance can access.

The app – which aims to reduce anxiety and improve independence – helps students with time management. It also prompts them to write down strategies for stressful situations which can be useful in moments of panic. Users are also directly linked to a team of human support staff.

Matthew, who experiences anxiety, says it helps him when he’s stressed about getting home.

“It will link me to the bus timetable and tell me what to look at,” he says. “Normally I’d write the information all down my hands and arms. It immediately gives you a breakdown to a solution.”

The app also prompts Matthew every two hours to rate his feelings on a traffic-light system. If he chooses red, a professional will contact him immediately. “You’re still able to be independent but they’ll help you out,” he says.

The government report concluded that knowing about the availability of DSAs before university helped two out of five disabled people decide to apply for higher education. It found the numbers positive, but admitted “not enough students know about DSA at the point of application”.

It adds that those who applied to university without knowing about the allowances would have had their minds put at rest.

Disabled Students’ Allowances:

  • The average amount granted is £500 per student
  • There is no deadline for DSA applications but it can take up to 14 weeks to get the support in place
  • Students are entitled to the allowance regardless of the institution they attend
  • The allowance is neither means-tested nor repayable
  • Students needing software are expected to pay the first £200 – the minimum cost any student is likely to incur when buying a computer

 

Student advisor for Disability Rights UK, Rundip Thind, agrees more needs to be done in schools and colleges to let people know what is available.

“Not knowing what you may get can result in some people not applying,” he says. “It’s sometimes felt that what you get isn’t worth the hassle and students would rather not go through an assessment process.”

He says awareness needs to happen at an earlier stage in order for DSAs to have a greater impact.

Matthew and Phoebe have completed their first years at De Montfort University, while Rose Ann has recently graduated from York.

Zoe Bannister

August 14, 2019

It is not just the exams that stand in way of Zoe Bannister’s dream of a place in medical school.

She must also overcome the challenges of phobias and having Asperger’s syndrome.

And she has – with a coveted spot at Cardiff University to study medicine in the autumn, as long as she gets her A-level grades on Thursday.