Cameron Mitchell’s mum Nicola Clulow has launched a court challenge to a Department for Work and Pensions rule that has seen her severely disabled son cut off from welfare benefits because he has spent too long in hospital.
Five years ago, readers may remember parents Lynette and Craig Mathieson won a battle against the same injustice in the Supreme Court in the name of their son Cameron, who died aged five at Alder Hey Children’s Hospital.
Thanks to Cam’s Law, which came into effect in 2016, thousands of parents have been given the support they desperately need. But Cameron Mitchell is 20, and Cam’s Law only applies to children.
“It’s crazy – anyone can see that Cameron is as vulnerable being alone in hospital as our Cameron was,” Craig says. “His circumstances didn’t change just because he had a birthday, so why is the law treating him differently?”
In 2010, desperately sick Cam – who had been battling a rare combination of cystic fibrosis and Duchenne muscular dystrophy – spent his 84th night in hospital, meaning the Disability Living Allowance his family relied on was abruptly cut off.
In total, he spent over three years of his life at Alder Hey. “We came close to destitution, and being on the street,” says Craig, from Warrington.
The family’s fight – which tragically took too long to benefit their own son who died in 2012 – was finally won in 2016 when the Supreme Court found that suspending a child’s DLA after 84 days in hospital breached his human rights. But it doesn’t apply to Cameron Mitchell, a young man from Carlisle with profound and multiple learning disabilities because he is no longer a child – even though his complex needs mean he was still, until very recently, in paediatric care.
Over 2020-2021, Cameron was a patient at the Royal Victoria Infirmary for 185 days, triggering the brutal “hospitalisation rule” – meaning his exhausted family have so far lost more than £5,000 in benefits payments.
“For the past 20 years, caring for Cameron has been our life,” Nicola says. “He is our number-one priority, and the majority of my time is focused on his needs. His condition means that he often needs hospital care, but when that happens, he doesn’t stop needing the care that I also give him. Cameron’s dad, Kevin, and I understand Cameron like no one else does, so we know when he is having a seizure, we know when he is in pain when it might not be obvious to medical professionals.
“Nurses don’t have the time to spend with Cameron or the training to be able to recognise his communication signals, to give him the help he needs. We have to be there to give that help, and that requirement doesn’t suddenly stop after Cameron has been in hospital for 28 days.
“For that reason, we need his PIP and Carer’s Allowance to continue after the 28-day deadline, especially because finding appropriate care outside a hospital setting is very difficult and is extending the time he is having to spend in hospital. Otherwise, we just wouldn’t be able to meet the costs of being at his side when he needs us.”
Nicola says she began to worry when her son didn’t seem to be reaching typical milestones for a baby of his age. “I remember Christmas 2001, before we started to worry about his conditions, he was sitting in the baby chair sucking on chocolate fingers and gurgling,” she says.
Today, Cameron, who is non-verbal and has epilepsy, dystonia, recurrent chest infections and multiple musculoskeletal problems, needs round-the-clock care.
“Cameron is a quiet, laid-back young man who doesn’t make a fuss unless he’s in discomfort or pain,” Nicola writes in her witness statement. “But it takes knowledge, time and patience to understand his signals – he does not speak or have any other conventional communication skills.
“He enjoys socialising and when he gets to know people, they see his cheeky sense of humour even though he’s unable to vocalise his thoughts. His infectious smile lights up the room and everyone who meets him and works with him goes on to adore him.”
Cameron exceeded 85 days in hospital earlier this year, and – because he had passed into adult care on March 9 – the so-called “hospitalisation rule” was applied. Not only were his Personal Independence Payments axed, but his mum also lost her Carer’s Allowance. The financial blow hit just as Nicola “was completely
overwhelmed as my son was seriously unwell and I was fearing for his life.”
The Department for Work and Pensions says: “We do not comment on live litigation. However, we are committed to ensuring that disabled people get all the support to which they are entitled. It is a long-standing rule that payment of extra costs benefits, such as PIP, is suspended after the first 28 days in a hospital or similar institution providing care.”
The DWP’s rules are based on the assumption that Cameron doesn’t need family support because his needs are being met by the NHS, whereas thousands of families can testify the opposite is true. Cameron’s palliative care team says family support has been “essential” to his treatment, and doctors have relied on Cameron’s parents being available 24/7 to assist with his care.
Since losing support, his family have continued providing the care he needs, incurring additional costs of about £100 a week on food and transport alone.
All of which is heartbreakingly familiar to Cam Mathieson’s family. “We have always found it very difficult to understand why the Government would treat people in this situation in this way,” Craig says. “They don’t want to treat us fairly and humanely, that’s one conclusion you could draw.”
He worries that Justice Secretary Dominic Raab has recently said he will legislate to “correct” human rights judgments. Meanwhile, Nicola is just beginning the fight Craig and his family endured for so long – arguing in the highest courts that the DWP is breaching her son’s human rights.
Her son, represented by Leigh Day solicitors, has applied for judicial review of the hospitalisation rule. His claim is supported by evidence from Mencap, Carers UK, Marie Curie and other charities. His family now await the High Court’s decision on whether their case – for a new Cameron’s Law to protect thousands more vulnerable families – can proceed.
A DWP spokesperson said: “We do not comment on live litigation. However, we are committed to ensuring that disabled people get all the support to which they are entitled. It is a long-standing rule that payment of extra costs benefits, such as Personal Independence Payment, is suspended after the first 28 days in a hospital or similar institution providing care.”