The failure to offer a learning disabled young man cancer treatment has been described as a shocking example of health inequalities by charities.
Ian Shaw was sent home to die, but a doctor queried that decision after seeing his story on the BBC.
Ian, 35, who has since been given chemotherapy, is now doing well.
The hospital involved has said his learning disabilities had not been a factor in the decision to put him on end-of-life care.
Ian has learning disabilities, autism and epilepsy.
In December 2016, he was diagnosed with testicular cancer.
His parents say they were told by doctors nothing more could be done for him as the cancer had spread too far.
In February, he arrived home for what his family believed would be his final few months.
Ian, whose behaviour could at times be challenging, spent nearly a decade in secure units, moving between three different places.
His family believe in the units he was over-medicated and his health neglected.
They had to fight to get him moved to a supported home in the community, it was a few months after the move that the cancer was detected.
His parents believe it could have been found the year before when he was treated for a testicular swelling, if there had been a thorough investigation.
In July of this year, the BBC reported on Ian’s case after it led to a call for the prime minister to appoint a commissioner to champion the rights of people with learning disabilities.
Sir Stephen Bubb, who had written two reports for NHS England on secure units, described Ian’s case as “all too typical” of the continuing failures vulnerable people faced.
Easily treated cancer
Dr Justin Wilson was watching the report on the BBC News at Six and Ten.
He is a psychiatrist who has also studied treatment of cancer in people with learning disabilities. He asked to be put in touch with the family.
He says: “Knowing that testicular cancer is one of the most treatable cancers that there is, I was surprised that the decision had been made not to provide treatment and I wanted to understand what that was about.”
As a result, a second opinion was sought about Ian’s treatment.
“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,” says Dr Wilson.
“I’m also clearly aware that providing cancer treatment for someone with the problems that Ian has is a real challenge.
“It is really difficult to give the best possible treatment to somebody in that situation, but my view is those challenges can be overcome.”
Ian is now undergoing chemotherapy at the Royal Marsden Hospital – and he is doing well.
A scan at the end of November showed after four rounds of chemotherapy the tumour, which had spread to his stomach, had shrunk.
Ian’s mother, Jan, says: “Especially when I thought there was no treatment and no cure, it was just a waiting game, but now there is hope.”
Ian was a patient at Luton and Dunstable Hospital when his family were told last February that he was terminally ill and could not be treated.
In a statement, the University Hospital Trust said a course of chemotherapy had been planned but Ian’s condition had then worsened.
A range of experts had been consulted and it had been decided he had been too ill to undergo treatment.
It added: “The decision was therefore taken, in consultation with his family, to start palliative care.
“The trust can confirm that Mr Shaw’s learning difficulties were not a factor in the decision to move to a palliative care pathway.”
NHS England says it is working to reduce the health inequalities faced by people with learning disabilities. But neither it nor the Department of Health wanted to comment on Ian’s case.
NHS policy is that reasonable adjustments should be made to ensure that people with learning disabilities get the medical help they need.
In Ian’s case, he is put under an anaesthetic for a short time while he is given the chemotherapy.
The tumour has affected Ian’s spine so he is unable to walk, but after 10 months in bed, in November he was moved into a wheelchair.
In a joint statement, the charities Mencap and Challenging Behaviour Foundation said: “We know 1,200 people with a learning disability die every year when their lives could have been saved had they had access to good quality healthcare at the right time.
“Failures to train healthcare professionals on how to support patients with a learning disability and the refusal to involve families in key decisions about their loved one’s health continue to contribute to this scandal of unequal health treatment.”