A mum is campaigning for people with learning disabilities to get the best possible medical care after successfully challenging a decision not to treat her son’s cancer – even though it looked like it would be ‘treatable’.
Sharon Bourn, from Gateshead, is calling on health groups to make sure they make arrangements so people like her son, Robert, can access potentially life-saving treatment.
Robert, who lives with his parents, was diagnosed with testicular cancer in October 2020.
He underwent surgery, but doctors later informed his family that he would only offer palliative care and not chemotherapy despite the treatment’s high cure rate.
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Following pleadings and a court hearing, the family and Hospital Trust agreed to treat Robert with modified chemotherapy which did not require as much anesthesia as the standard chemotherapy given for testicular cancer.
After legal challenges he underwent a modified form of chemotherapy and surgery to treat his cancer, he has now been given the green light and is enjoying life, Sharon said.
What made the operation more difficult for the Bourn family, however, was that Robert, now 32, has the genetic condition Fragile X Syndrome and has been diagnosed with autism. severe and a learning disability. meaning he is non-verbal and dependent on others to help take care of him.
The family is now asking healthcare providers to ensure they are working with the families of people with learning disabilities to provide the best possible care.
Sharon said: “Over the years I have gained a very good understanding of how Robert communicates.
“He doesn’t have much to say but he is able to make his needs known, for example by taking a cup to show that he wants to drink. Robert can also choose the food he would like if I presented him with two simple choices. It’s fair to say that I know Robert better than anyone.
“I remember hearing the word cancer and it all went away. It’s every parent’s worst nightmare that I was only trying to come to terms with when we were told Robert’s cancer care was stopped and he could only receive palliative care.
“It was terrifying to hear that my son could benefit from palliative care and it was something that I couldn’t understand. I did not want to accept that Robert could not receive care because of his disability and I was determined to do everything I could for him.
She added: ‘Robert’s chemotherapy started working from day one and about a week after his lymph node surgery we found Robert to be cancer free. It is now completely back to normal and fantastic. He likes to live his life and saying I’m proud of him doesn’t even cover it.
“We would have preferred not to be in the position where we had to sue, we did, but at the time we felt we had no other choice because it was a matter of life or of death for Robert.
“There is a lack of understanding about the treatment of people with learning disabilities and Robert has experienced this first hand.
“We want to raise awareness that people with learning disabilities can have chemotherapy if there are reasonable adjustments, and doctors shouldn’t just give up on the individual. Morally and ethically, it must be wrong.
Robert’s story is to feature in a Panorama program called Will the NHS Care for Me? Line of Duty actor and activist Tommy Jessop investigates the care people with a learning disability receive and why they are more than twice as likely to die from preventable causes as the rest of the population.
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