Family Campaigns For Better Treatment For People With Learning Disabilities After Lawyers Help Overturn Decision To Only Offer Man With Testicular Cancer Palliative Care
A mum is campaigning for people with learning disabilities to receive the best possible medical care after successfully challenging a decision not to treat her son’s cancer.
Sharon Bourn, of Bensham, Gateshead, is calling for health bodies to ensure they make provisions so people like her son, Robert, can access potentially life-saving treatment.
Mum asks medical treatment dispute lawyers help after son's cancer diagnosis
It comes after the 54-year-old instructed specialist medical treatment dispute lawyers at Irwin Mitchell to challenge a decision by Newcastle upon Tyne Hospitals NHS Foundation Trust not to offer her Robert chemotherapy after he was diagnosed with testicular cancer.
The Trust said Robert was unsuitable to receive treatment. It only offered palliative care.
However, after Irwin Mitchell sent legal submissions inviting the Trust to undertake a best interests process, the Trust and Sharon reached an agreement over Robert’s care which was approved by the Court of Protection. He underwent a modified form of chemotherapy and surgery to treat his cancer.
Autistic man given all-clear after testicular cancer care agreement reached
He has now received the all-clear and enjoying life, Sharon said.
The family have now joined their legal team at Irwin Mitchell in calling on health providers to ensure they work with the families of people with learning disabilities to provide the best care possible.
Robert’s story can be told after a judge lifted reporting restrictions.
Expert Opinion“Robert’s family were devastated at his diagnosis and even more so at the decision to then only offer him palliative care.
“In effect that decision handed Robert a death sentence and understandably all Sharon wanted was what any parent would – the best for their child. Following legal submissions and due process through the Court of Protection we were able to help Sharon and the Trust reach an agreement regarding what was best for Robert.
“While it’s fantastic, that following treatment and surgery, Robert has made a great recovery his case highlights the difficulties too many families face in ensuring loved ones who are autistic and those who have learning disabilities access the care they deserve for their loved ones.
“People who are autistic or those with disabilities should receive the best level of care possible and it’s vital that health providers and families work together to ensure this happens.” Kirsty Stuart - Senior Associate Solicitor
Medical treatment dispute: Robert Bourn's story
Robert, now aged, 32, has the genetic condition Fragile X syndrome, and had been diagnosed with severe autism and a learning disability.
He is non-verbal and is reliant on others to help care for him.
Robert, who lives with parents, was diagnosed with testicular cancer is October 2020. He underwent surgery but then the Trust informed his family it would only offer palliative care and not chemotherapy despite there being a high cure rate from this treatment.
Following legal submissions and a court hearing the family and Hospital Trust agreed to treat Robert with a modified chemotherapy which didn’t require as much anaesthetic as the standard chemotherapy given for testicular cancer.
He then underwent surgery in July 2021 to remove his lymph nodes following which he was given the all clear.
Mum campaigns for people with learning disabilities not to be denied care
Sharon said: “Robert loves motorbikes and buses. He also enjoys going to his day centre, interacting with people and going out on drives with his Dad.
“Over the years I’ve built a very good understanding of how Robert communicates. He doesn’t have much speech but he’s able to make his needs known, for example, by picking up a cup to show that he wants a drink. Robert can also choose what food he would like if I present him with two simple choices. It’s fair to say that I know Robert better than anyone else.
“I remember hearing the word cancer and everything switched off. It’s every parent’s worst nightmare which I was only trying to start to come to terms with when we were told Robert’s cancer care was being stopped and he could only receive palliative care.
“Hearing that my son could be on palliative care was absolutely terrifying and was something I couldn’t understand. I didn’t want to accept that Robert couldn’t receive care because of his disabilities and was determined to do everything I could for him.
“Robert’s chemotherapy started working from day one and about a week after his lymph node surgery we found out that Robert was all clear of cancer. He’s now completely back to normal and absolutely fantastic. He’s enjoying living his life and to say I’m proud of him does not even cover it.
“We would rather not have been in the position where we had to bring the action we did but at the time we felt we had no other choice as it was a matter of life or death for Robert.
“However, what’s even more worrying is over the last year or so we’ve heard stories of other families being in a similar situation to us.
“There’s a lack of understanding about treating people with learning disabilities and Robert directly experienced that. We want to raise awareness that people with learning disabilities can have chemotherapy if there are reasonable adjustments, and the doctors should not just give up on the individual. Morally and ethically this has to be wrong.
“In my view, there were lessons learned in Robert’s case about treating people with learning disabilities and treating them as a human being. I felt like Robert was being discarded like scrap metal.
“I know that there are other parents who have children who could find themselves in a similar situation. I hope that by speaking out it could give others hope. I want to save others from going through all the pain and upset which we went through. In particular, I hope that others will not have the trauma of hearing that their son needs to be put on palliative care.”
Panorama to feature Robert's case
Robert’s story is due to feature in a Panorama programme entitled Will the NHS Care for Me? Line of Duty actor and campaigner Tommy Jessop investigates the care people with a learning disability receive and why they are more than twice as likely to die from avoidable causes than the rest of the population.
The programme is due to air tonight on BBC One at 8pm.
Find out more about our expertise in supporting families affected by medical treatment disputes at our dedicated protecting your rights section. Alternatively to speak to an expert contact us or call 0370 1500 100.