Gateshead mum left angered after autistic son refused chemotherapy

Sharon Bourn, from Gateshead, is calling for health group to ensure they make provisions so people like her son, Robert, can access potentially life-saving treatment.

Robert, who lives with his parents, was diagnosed with testicular cancer is October 2020.

He underwent surgery but then doctors informed his family it would only offer palliative care and not chemotherapy despite there being a high cure rate from this treatment.

Read more: Look inside North Yorkshire £2.25 million barn conversion

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.

After legal challenges, he underwent a modified form of chemotherapy and surgery to treat his cancer, he has now received the all-clear and enjoying life, Sharon said.

What made the surgery more difficult for the Bourn family, though, was that Robert, now aged, 32, has the genetic condition Fragile X syndrome, and had been diagnosed with severe autism and a learning disability; meaning he is non-verbal and is reliant on others to help care for him.

Robert Bourn at the hospital. Picture: NORTHERN ECHO (Image: NORTHERN ECHO)

The family are now calling on health providers to ensure they work with the families of people with learning disabilities to provide the best care possible.

Sharon said: “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 presented 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.

Robert's family has called on health professionals for better understanding. Picture: NORTHERN ECHO (Image: NORTHERN ECHO)

“Hearing that my son could be on palliative care was 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.

She added: “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 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.

Robert was given the all-clear in 2021. Picture: NORTHERN ECHO (Image: NORTHERN ECHO)

“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.

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.

Read next:

• Future of Durham City restaurant left ‘in jeopardy’ after burglary
• Miller and Carter Tynemouth – opening date revealed
• Declan Donnelly announces birth of second baby

If you want to read more great stories, why not subscribe to your Northern Echo for as little as £1.25 a week. Click here