A new BBC Panorama programme has investigated why people with learning disabilities are dying so much younger than their non-disabled peers.
The programme, Will The NHS Care For Me?’, hosted by actor Tommy Jessop, found that people with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population.
Tommy, best known for his role as Terry Boyle in Line of Duty, explores how patients with learning disabilities are treated in NHS hospitals by hearing patient stories and examining thousands of coroners’ reports.
He found cases where people with a learning disability were not listened to, where they were traumatised, or where they were neglected.
Indeed, out of the 3,500 deaths of people with a learning disability that were reviewed by Tommy and the Hardcash production team, the NHS found that in nearly a third of cases there was no evidence of good practice.
This is thought to be partly down to the lack of learning disability nurses, which has been on the decline for the last decade. Currently, there are only 3,200 learning disability nurses in the NHS; this compares to 5,500 in 2019.
Some hospitals slow to make necessary reasonable adjustments
In the documentary, Tommy speak to Julie’s family, who had Down’s syndrome. Julie was admitted to hospital after she lost nearly three stone after she stopped eating and drinking.
When Julie’s brother visited hospital, he found her soiled in bed with dry vomit in her hair. Julie lost another two stone in hospital and was at high risk of malnutrition, but she was never referred to the nutritional team.
When Julie caught chickenpox, she was too weak to fight the infection and died in hospital shortly after, aged 58.
“I think she was a nuisance to them and they hadn’t got the facilities or the trained staff to deal with people with a learning disability,” Peter says.
“She didn’t deserve the treatment she got. I wished I’d pushed harder. I really do. But I didn’t. And I’ve got to live with that,” he added.
Cat McIntosh, a community learning disability nurse who cared for Julie before she went into hospital, said: “It felt to me as though people weren’t prepared to make the effort or show her the same level of care that we would if maybe she didn’t have the diagnosis and the labels.”
“People with a learning disability have a right to access good quality and timely care”
Edel Harris, Chief Executive of learning disability charity Mencap, has thanked the BBC for highlighting the “huge inequalities that people with a learning disability often face when accessing healthcare”.
She said: “Tragically, the stories told in tonight’s Panorama are not isolated – research shows that people with a learning disability continue to face persistent inequalities and die decades younger than the general population. More needs to be done.
“I urge the newly formed Integrated Care System Boards to sign the Treat Me Well Pledge and take urgent action to deliver the change desperately needed to prevent future avoidable deaths.
“People with a learning disability have a right to access good quality and timely care that meets their needs and helps support them to live happy and healthy lives. I call on those involved in setting the new integrated plans to start making a change in their communities.”
BBC Panorama’s ‘Will The NHS Care For Me?’ airs at 8pm tonight (10 October).