Readers, I absolutely can’t believe this. I don’t have the words to describe my feelings.
As a person who has been disabled since birth, I have heard of many people who have said crazy things about disabled children.
I was shocked in 2009, when I heard what Jeffrey Marshall said after the sad death of Ivan Cameron.
Virginia Ironside’s comments about disabled children on Sunday Morning Live in 2010 made me very angry and upset.
I cried and screamed at my radio in 2011, when I first heard the opinions of Claire Khaw on disabled children.
I was shocked and upset yet again this year, by Cornwall councillor Collin Brewer who said something terrible about disabled children and then recently made it worse.
Readers, all those people will always make me angry, upset and shocked- because their views are outdated, and because they are in public attention and should know that outdated views should be kept to themselves on screen, on air and in print.
However, readers, I never, even in my worst nightmares, thought I would hear a parent of a disabled child say, on national TV, that if her son was a dog, she would have him put down.
Jenny Young was told she had ADHD in her mid-forties. She has four children, two now in their twenties, one 19, and one 10, who all have the condition. The 10 year old, Ryan, also has severe learning disabilities and ‘the mental age of a two-year-old.’
He is often violent towards Jenny, who says he bites, scratches and punches her and can knock her glasses off. She says his behaviour is ‘unpredictable.’
Jenny told ITV’s This Morning today that if Ryan was her husband, they would have been divorced by now.
She added that because she is Ryan’s mother, and ‘not a pet owner’ she has to ‘put up’ with his behaviour. If Ryan was a dog, she said, she would have him put down.
She said she used the shocking example of putting a dog down because she has a family member who went through the ‘traumatic experience’ of having their dog euthanised after they could not control its violence.
She said the family who put the dog down went through a ‘horrendous, traumatic experience,’ and ‘worked really, really hard and did everything they could possibly do’ for the dog before they made the choice to have her put down.
She added ’I don’t liken Ryan and the dog exactly but there is a choice. When you have a dog that behaves [violently] and might attack you any minute, you have a choice.’
She went on to say that there is ‘no choice’ for parents of children like Ryan and that ‘there isn’t a refuge for battered mums.’
I know many other disabled people both online and offline. I know many parents of disabled people, two of them being my own.
Parents of disabled children do not have easy lives. Everyone knows that- including their children, whether they can express this knowledge verbally or not. Parent carers need a lot of support, and they deserve all the support they can get.
I understand Jenny Young’s situation, and I hope she gets appropriate support for herself and Ryan.
However, as a disabled ‘child,’ my first reaction is to feel sad and sorry for Ryan, who, like all children with similar disabilities, cannot help his violent outbursts- because his mother has described him in such a shocking way on national television.
While I understand Jenny’s frustrations, I cannot understand her use of the shocking example of putting down a dog. I would like to say to Jenny Young, and all parent carers out there, that comparing disabled children and their lives to animals and the lives of animals never helps anything.
Comments like these will only make disabled people, and their parents, strongly dislike you.
Disabled people are not dogs. We are not ‘deformed lambs’ whatever Collin Brewer and the farmers in his area would have us believe.
Getting the mainstream world to believe that we are not animals has been a long, difficult and painful struggle for disabled people in the UK.
After all our battles and struggles, if our own parents start comparing us to animals, on national television no less, then how can we blame Jeffrey Marshall, Virginia Ironside, Claire Khaw, and Collin Brewer- and any other public figures who might agree with them- for revealing their outdated opinions on disabled children?
If our own parents start comparing us to animals on national television, then what hope do we ever have of convincing the wider mainstream public that we are intelligent people with opinions who deserve equal rights in all areas of society?
Vasilli Kalisperas
A healthy baby has been left deaf, blind and locked inside his body because a trainee midwife did not recognise early signs of jaundice.
Vasilli Kalisperas from Malvern in Worcestershire had a condition called kernicterus, which is treatable with light therapy or a blood transfusion.
But the trainee who visited the family reassured his parents by telling them to place their son near a window.
Worcestershire Acute Hospitals NHS Trust has admitted liability.
Kernicterus is a condition caused by bilirubin, a yellowish substance found in bile.
Vasilli, who was born on 18 May last year, had a fairly common enzyme deficiency called G6PD which can speed up the process of kernicterus.
Cardiac arrest
When this is not removed from the blood it builds up in the body and can cross the brain barrier where it eventually causes brain damage.
His parents, Elena and Michael, said by the time their son was taken to hospital two days later, his bilirubin level, which causes the skin to turn yellow, was off the chart.
The National Institute for Health and Care Excellence (NICE) guidelines show bilirubin should be checked in all babies who have jaundice within 72 hours of birth.
Although the trust claimed it was normal practice for student midwives to visit patients on their own when they are in their final year of training, it said a new system meant no student midwife could make home visits alone unless their supervisor was confident they were fully competent.
The family were told by the hospital that in Vasilli’s case there had also been issues with the trainee’s previous placement.
His mother said that when he arrived at hospital on 20 May he was given phototherapy but went into cardiac arrest and had to be resuscitated.
She said: “When I saw him like that I just broke down.
“The amount of tubes that he had, I thought that he was not going to survive.
“I can’t put it into words. I would not want anyone to go through that.”
His father Michael said recent tests showed his son was completely deaf and may now have microcephaly, which means his brain will grow more slowly than his body, leaving him physically deformed.
“I see children who have passed milestones and it just upsets me so much to see that he has lost so much,” he said.
‘Deeply sorry’
Eddie Jones, from JMW Solicitors who specialise in Kernicterus cases, said children like Vasilli can make a full recovery if treated quickly.
The law company has dealt with several similar cases and believes they may be increasing because mothers and babies are being sent home earlier.
“There’s not the degree of monitoring in hospital over a period of days that there was several years ago,” he said.
“It is essential therefore that community midwives are vigilant.”
The trust has admitted liability and said it was “deeply sorry for the mistakes made in Vasilli’s care”.
In the future, Vasilli’s family will receive a multi-million payout that cannot be determined until the full extent of his disabilities are known.
I’m shocked by this. It shouldn’t happen in this century.
I have CP and I have friends with CP who have similar problems to Ryan Moss. I would hate to think any restaurant would ever treat one of us in this way.
A Trafford Centre restaurant refused to blend food for a severely disabled teenager – because it said it would break health and safety rules.
Staff at Zizzi refused to use a hand held-blender on a bowl of pasta Chris King ordered for stepson Ryan Moss.
The 17-year-old has a severe form of quadriplegic cerebral palsy and cannot eat solid foods.
His family, from Rochdale, always take a small, plug-in blender when they eat out, and say staff at the chain restaurant have never refused to use it before.
But Chris was stunned when a waiter told him the chef would not use it. He then spoke to the restaurant manager, who blamed the decision on health and safety rules.
Zizzi bosses have now apologised to the family and are investigating the incident.
Chris, 49, from Shelfield Lane, Norden, said: “I was more shocked than anything else.
“Wherever we go, Ryan goes. Whatever we eat, Ryan eats. Some families of children with special needs would come up against a hurdle like this and it would put them off eating out again.”
Chris and Ryan left Zizzi after the incident and ate at nearby Pesto, which accommodated their needs. Chris wrote about the incident on Facebook and was flooded with messages of support from families of other disabled children who had faced similar experiences when eating out. Ryan’s mum Paula, 46, said: “Things like this shouldn’t happen in this day and age.
“People like Ryan should be able to eat anywhere.”
Chris added: “We’ve never had a problem at this Zizzi, or the one in the Triangle in Manchester before – the staff there know Ryan. Food blending should be a simple thing to accommodate, it doesn’t need a trained chef.”
A spokeswoman for Zizzi said: “We were extremely sorry to hear about the incident in the Trafford Centre on Wednesday evening and have apologised to Ryan and his family for any distress this may have caused.
“We strive to offer the very best possible customer service at all of our restaurants and are looking into the incident as a matter of urgency to ensure levels are maintained in the future.”
Bipolar Woman’s Abortion Legal Battle
The High Court in London is judging whether a pregnant woman with bipolar disorder has the mental capacity to request an abortion.
The married 37-year-old, who cannot be identified for legal reasons, is 23 weeks into her planned pregnancy.
The court heard how she began asking for a termination after she is believed to have stopped taking her medication.
Her doctors say she is not sound enough of mind to decide for herself.
The woman, who has been detained under the Mental Health Act, had said she would probably kill herself if she was forced to give birth and “locked up”.
The judge, Mr Justice Holman, has been hearing evidence from a consultant psychiatrist involved in the woman’s treatment, from a lawyer representing her husband and from the woman’s mother.
The psychiatrist said he was “100% certain” that the woman lacked the capacity to make a decision about termination.
A lawyer representing her husband, who was at today’s hearing, said he agreed with the psychiatrist’s evaluation, and the woman’s mother told the judge: “I know my daughter when she is well and she is definitely not well.”
The hearing continues.
CLARION CLAIMS PRESTIGIOUS NATIONAL AWARD
A press release:
National deaf services provider, Clarion, is celebrating after winning the Supply Chain Partner of the Year category at the prestigious Employment Related Services Association awards.
The Employment Related Services Association (ERSA) is the trade body for organisations delivering services within the Welfare to Work sector and Clarion beat off competition from 170 other organisations to claim the award.
Boosted by endorsements from six of its national customers, Clarion was recognised for the innovative approach it takes to supporting deaf and hard of hearing people on the government’s Work Programme.
Clarion uses a completely freelance workforce to supply Prime Contractors with Communication and Employment Consultants (CECs) who are qualified communication professionals with employment advisor skills and knowledge. This entrepreneurial and unique service has turned tradition on its head, found people jobs and ensured Clarion has become the biggest company of its kind in the country.
Clarion’s National Operational Manager Bob Marsh said: “Even being nominated for the award was a huge achievement but to be recognised ahead of so many other innovative companies is fantastic for the business. It is testament to the unique employment solution that we have developed and the extraordinary customer service we have established with our partners that we are able to make sure the Work Programme is effective for deaf and hard of hearing people.”
It has been a triumphant period for Clarion after its Head of Business Development, Cheryl Cullen, was shortlisted for the ‘No Boundaries’ category in the Microsoft Dynamics Change Ambassadors Programme.
The award recognises individuals within an organisation who, through their skills, efforts and vision, have led significant change for their business and Cheryl was one of five who were recognised for their contributions.
Cheryl said: “I am thrilled to have been nominated but I really couldn’t have achieved the change without the support of my Business Development Team and the value-driven staff at Clarion. Everyone was excited to get on board and support an idea for change which had such a high social return for deaf and hard of hearing people.”
For more information on Clarion and the services it offers please visit: www.clarioncall.net
Lillian Boyd had been blind for more than 20 years, when she suddenly started seeing things.
It came as some surprise when two small black Labradors apparently appeared in her County Durham home, still more when she started to see little girls in pretty dresses, and men she did not recognise.
At the age of 86, her first reaction was the fear that if she talked about them people would think she was losing her mind.
“I was frightened to send for the doctor, because I thought, he’ll think I’ve got dementia, my age,” she said.
What she has got however, is Charles Bonnet Syndrome (CBS), a condition caused by eye disease, rather than psychiatric problems.
The hallucinations make no noise and you cannot feel them, but they can be a compelling sight.
“You cannot describe it very well. It’s a horrific thing,” Mrs Boyd said.
“I’ve had horses, a cow, men. And when you try to get up and walk about, even though this is in your eyesight, you can’t move, because you think you’re going to knock these people over.
“They’re real in one way, and yet when you get a good look at them – I just don’t know – I cannot describe the word for them. Unreal and yet they’re there – they seem real.”
She said the uninvited guests would often “stay around all day” and were less than welcome.
‘Bizarre images’
The syndrome occurs in people whose eyesight has deteriorated, when parts of the brain associated with vision begin to create their own images, having been starved of stimulus from the optic nerve.
Dr Dominic Ffytche, a senior lecturer at King’s College London’s Institute of Psychiatry, and an expert in CBS, said there were more than 200,000 cases of the condition in the UK.
However, with people often reluctant to admit having hallucinations, it is impossible to tell exactly.
It took Mrs Boyd a couple of weeks before she decided to speak about what was happening.
Luckily, her doctor had come across the condition before and was able to reassure her that the hallucinations were not psychiatric.
“He mentioned Charles Bonnet and he said he’d done the research on it, because his father had it,” Mrs Boyd said.
Dr Ffytche said there were various ways to distinguish CBS from hallucinations caused by psychiatric problems.
He said: “Hallucinations caused by eye disease tend to be quite detailed, with patterns and people in elaborate dress. They’re very bizarre images.
“People don’t mistake them for reality and they don’t see people they recognise.”
He said research around the condition is constantly developing.
‘Wonderful relief’
“What we don’t know yet is why some people never get it,” he said. “The latest research suggests it could be the way the brain is wired – the way it makes connections,” he said.
“It could be that your brain is adapting better to vision loss if you’re having hallucinations.”
There is no consistent cure for CBS, but medication used for other conditions, including epilepsy, dementia and schizophrenia, have been known to work on some people.
Dr Ffytche believes awareness of the condition is now much greater than it once was.
“It used to be that no one knew about it, but now it’s going the other way,” he said.
“People’s hallucinations are being put down to eye disease and other causes are being missed.”
A study carried out by Dr Ffytche and his colleagues found that in about 20% of cases, people actually enjoyed seeing the images, while about half were seen as neutral and the other 30% were unpleasant.
Mrs Boyd’s hallucinations, which have been visiting her now for as long as nine months, definitely fall within the final group.
She said she was more comfortable now she knew her visions were not signs of dementia, but she still described them as “disturbing”.
Thankfully, she had had some recent respite.
“I’ve not had any for two days, and I’m thinking, ‘Oh thank god for that’. It’s been a wonderful relief when they’re not there,” she said.
Disabled Woman Died After NHS Failures Finds Report
A catalogue of mistakes by an out-of-hours GP service and a hospital contributed to the death of a young woman with physical and learning disabilities, the NHS ombudsman says on Tuesday in a highly critical report that has led to fresh claims of prejudicial attitudes leading to poor care for such vulnerable patients.
The report, by NHS ombudsman Dame Julie Mellor, finds that Tina Papalabropoulos, 23, died in Basildon hospital in Essex of aspiration pneumonia in 2009 after a series of blunders by two NHS organisations.
Hospital staff let her drink, worsening her life-threatening illness, and even though fluids were leaking through her lungs.
Other failings included the refusal of an out-of-hours GP to visit Papalabropoulos when her parents requested a visit because their daughter’s condition was worsening, and crucial delays in diagnosing and properly treating her condition at the hospital.
Christine Papalabropoulos, the dead woman’s mother, and the charity Mencap both claimed that doctors provided such grossly inadequate care to her because of attitudes based on her disabilities. She had learning disabilities, epilepsy, a form of dwarfism called Russell-Silver syndrome and severe curvature of her spine.
“When your child becomes ill and you need professional help from doctors, you and your child are looked at and you can see their mind working: ‘Is there any point in trying to save this child’s life?’ You can see that they think ‘this child has an existence and not a life’,” said Christine Papalabropoulos. “Wrong! This child is loved by all the people, family and friends that they come into contact with. This child is a human being. They just happen to be born with a disability.”
Beverley Dawkins, Mencap’s policy manager, described Papalabropoulos’s death as “an avoidable tragedy”. She said: “Her family and Mencap believe that the failings that led to her losing her life at 23 were because doctors held the view that Tina’s life was not worth saving, due to her disability.”
The hospital trust issued a brief statement welcoming the ombudsman’s report but without any apology to the family or regret over the death. It simply said that since Papalabropoulos died in 2009 “the hospital has made significant improvements to the care and treatment we provide our patients with learning disabilities”.
In 2010 it appointed a dedicated nurse adviser specialising in learning disabilities to work with patients, their families and carers, and trust staff, it added.
Mencap says it has identified about 100 cases in which patients with learning disabilities have died after receiving poor care and estimates 1,200 such patients a year die because of neglect by the NHS. It is “deeply concerned” about three other deaths at Basildon hospital.
Dr Dan Poulter, the health minister, said it was “unacceptable” that anyone with learning disabilities received what he called the “substandard care” detailed by the ombudsman and said ministers were determined to improve the quality of care for such patients, to stop them dying avoidably early.
Papalabropoulos fell ill with a cough on 21 January 2009. A doctor from the family’s GP surgery visited, said she had an acute lower respiratory tract infection and advised her parents to ensure she kept taking antibiotics which had been prescribed the day before.
Three days later, in the early hours of the morning, Tina’s mother became so concerned by her daughter’s condition that she rang South East Essex Doctors Service (Seeds), the local out-of-hours GP service. “She asked for an urgent home visit, but the Seeds doctor declined to visit her. Instead the Seeds doctor said that he would send a message to the [GP] practice requesting a home visit the next morning. However, because the next day was a Saturday, the practice would not be open,” the ombudsman’s report found.
Mellor castigates the unnamed GP for not taking appropriate action to assess and treat the patient. As a result he “did not take reasonable decisions” and “his care fell so far below the applicable standard that this was service failure”. She found “no evidence that [the patient's] rights under disability discrimination law were properly considered by the Seeds doctor.”
The ombudsman made four findings of “service failure” against Basildon hospital, part of Basildon and Thurrock University Hospitals NHS foundation trust. It was guilty of “a prolonged delay before [Paplabropoulos] received the treatment that her condition called for”.
Doctors should have given her intravenous antibiotics through a drip and intravenous fluids but did not do so, Mellor found. “They allowed [her] to carry on drinking, despite the risk of aspiration (that she might breathe in the fluids) and they tried to give her oral antibiotics, which her records show she was refusing to take.” Staff also failed to transfer her to a high-dependency unit.
The report also criticises the hospital for doctors not giving Tina’s parents the full picture during discussions with them, not implementing a care plan which should have guaranteed her better care, as they had dealt with her since she was young, and staff did not discharge their responsibilities under disability discrimination law.
