A Gateshead mum has claimed her autistic son was "discarded like scrap metal" as he battled cancer after the hospital caring for him offered him end-of-life treatment.
Sharon Bourn, 54, was devastated after her son Robert was diagnosed with testicular cancer in October 2020. Although he underwent surgery to remove the tumour, the cancer had spread and typical treatment required up to 72 hours of chemotherapy.
However, Sharon said it was "absolutely impossible" for Robert to receive this chemotherapy due to his complex needs. 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.
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The mum from Bensham had hoped the hospital would go away and explore other types of chemotherapy he could have however, she was shocked when Newcastle upon Tyne Hospitals NHS Foundation Trust offered him palliative care. After instructing specialist medical treatment dispute lawyers at Irwin Mitchell to challenge their decision, Robert underwent a modified form of chemotherapy and received the all-clear.
She is now campaigning for people with learning disabilities to receive the best possible medical care and is calling for health bodies to ensure they make provisions so people like her son, Robert, can access potentially life-saving treatment. Recalling the moment she discovered Robert had cancer, Sharon said it's "every parent’s worst nightmare".
She said: "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.
"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."
Robert, who lives with his parents, underwent surgery before the trust offered palliative care instead of alternative chemotherapy despite there being a high cure rate from this treatment. In response, Irwin Mitchell sent legal submissions inviting the Trust to undertake a best interests process.
Following legal submissions and a Court of Protection hearing, the family and 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.
She said: "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."
Sharon continued: "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."
The family has 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.
Kirsty Stuart, the expert medical treatment disputes lawyers at Irwin Mitchell representing Robert with his mum Sharon as his Litigation Friend said: "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."
A spokesperson for The Newcastle Upon Tyne Hospitals NHS Foundation Trust said: "Finding out that a loved one has cancer is always a distressing experience, and we have worked hard to support Mr and Mrs Bourn and their son Robert throughout his treatment with us. We are pleased that he has had a good outcome from that treatment.
"This was a very difficult case in which both clinicians and family members had significant concerns about the implications of chemotherapy for Robert.
"We fully accept that we should have arranged a best interests meeting earlier in his care planning, using the framework set out in the Mental Capacity Act. This was not done sufficiently promptly, and we have made changes to our practice to correct this.
"As soon as Mrs Bourn raised a concern about the proposed treatment we held a best interests meeting, and referred the matter to the Court of Protection so that Robert could benefit from independent decision making in relation to his care. The Court of Protection subsequently agreed in full to the treatment plan put together by the clinical team at the trust and Robert received successful treatment here.
"We work very hard to support people with learning disabilities to have a positive experience of care and to improve health outcomes for them. When things go wrong, we try to be open and honest, and to take action to put things right."
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.
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