Tommy Jessop is an award-winning actor, well known for his role as Terry Boyle in the TV series, ‘Line of Duty. Tommy also has Down’s Syndrome. He is keen to put the privilege of fame to good use and to tell the stories of people with learning disabilities. – “Being in Line of Duty made people listen more and I’ve had lots of invitations to speak up,” Tommy told BBC’s Panorama. “It is about time people really should start listening to us and see how we really feel. Our lives truly are worth living and medical care should be better for all of us.”
Tommy states that he has always had good care from the NHS, but that others like him have not been so fortunate. It’s a chilling statistic that people with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. They also have, on average, a 20-year shorter life expectancy. When the NHS reviewed the deaths of over 3,500 people with a learning disability, in nearly a third of cases there was no evidence of good practice.
Tommy wanted to meet some of the families affected and learn about the people behind these numbers. Parents, siblings and carers spoke movingly of the special people they’d lost, precious human beings who were often treated less well than they should have the right to expect. There were numerous instances of neglect, communication breakdown, and appropriate treatment not being offered.
Chloe died at only 27 years of age, after a catalogue of missteps at the Queen’s Hospital in Romford. In pain and agitated, Chloe was unable to articulate how she felt and was given morphine, which can cause breathing difficulties in people with her serious muscle condition, myotonic dystrophy. Resuscitation followed a cardiac arrest, after which she was moved to a general ward, where she passed away five days later. There were no specialist learning disability nurses involved in her care.
Julie had lost nearly three stone and had stopped eating and drinking when she was admitted to Stepping Hill Hospital in Stockport. When her brother visited, he found her in a soiled bed, with vomit in her hair. Despite the fact that she’d lost a further two stone, the nutritional team was never involved in her care. She contracted chickenpox whilst in hospital and, too weak to fight infection, died at the age of 58.
A mother told of her fight to gain life-saving cancer treatment for her son, Robert, who has the genetic disorder, Fragile X syndrome. After the removal of a testicular cancer tumour, it was discovered that cancer had spread. Unable to remain still for the required 72 hours of chemotherapy, Robert’s mother was advised that he would have to go into end-of-life care and, at one point, was told to ‘calm down’. Only when she employed a lawyer and obtained a second opinion, did the hospital convene a meeting to offer an alternative form of chemotherapy. Robert has made a full recovery. If his mother hadn’t made a fuss he would be dead!
In all cases, reviews were held, and the hospital trusts apologised and promised to improve their procedures.
It can be challenging for doctors and nurses to treat people with learning disabilities in a busy hospital environment, as it can take longer, says Tommy. He believes that some hospitals might benefit from staff who understand the issues that face people with learning disabilities and can communicate with people who find it hard to explain. The patient should be asked about their symptoms directly, instead of through their parents or carers. That way, staff would be more likely to reach the right diagnosis, instead of attributing symptoms to their disability.
In the meantime, the Royal College of Nursing reported in 2021, that the number of specialist learning disability nurses employed by the NHS has fallen from approximately 5,500 to 3,200 since 2009!
Autistic people face similar barriers to appropriate healthcare.
Nicola tells her story:
“As an autistic person without a learning disability, this is a problem that I can relate to. The healthcare system struggles to fully understand their autistic patients and give them the care they need.
A consequence of this is that the average life expectancy of a severely autistic person is 39 years. The number only rises to 58 years for higher-functioning autistic people. Compare these numbers to an average life expectancy of 81 years for neuro-typical people.
Another factor is mental health. If people cannot see the problem, they ignore it. Most of my autism is sensory-based, which means the world for me is a very lonely, stressful, and depressing place. I raised my anxiety problem with my GP who prescribed some tablets to help. The tablets had side effects which left me unable to take them. I ended up using the internet to look for relaxation techniques to deal with my mental health.
A negative impact of the pandemic on healthcare is that GPs now have very few face-to-face appointments. In a few instances I have messaged my GP with a problem and then received a message back saying a prescription has been put out for me. How is that possible when the GP had not spoken to me or seen me to diagnose the problem?
On another occasion, I messaged my GP about a problem and the response was “I think you’re stressed.” It was about a few moles I have that I was not happy with how they had changed. This was concerning for me, as are we not told to get moles checked if they change?
Healthcare is important for everyone, so we should all be treated equally. Even those of us who may need a little extra help. Autistic people are prone to health problems, yet many go undiagnosed and/or treated, which is why we have such a low life expectancy.”
We all recognise that the NHS is under unprecedented pressure due to more than a decade of underfunding. Each of us will have a tale to tell: either of heroic staff, still delivering under severe pressure; or of care not meeting our needs or expectations. All we ask is that people with learning disabilities or autism are treated like everyone else. But maybe with a little more consideration for the difficulties they face. It’s the least we should expect in a compassionate society.
Nicola Martin and Tony Flower
Picture: Tommy Jessop (right) pictured with his brother. (2022, October 24). In Wikipedia. https://en.wikipedia.org/wiki/Tommy_Jessop https://creativecommons.org/licenses/by-sa/3.0/