A report has found that children with a learning disability in Scotland are more likely to die prematurely – often from treatable causes.
The Scottish Learning Disability Observatory (SLDO) study found that 34% of these deaths were preventable.
Previous research has found that adults with a learning disability are twice as likely to die from preventable diseases.
The Scottish Government said it was concerned about health inequalities.
Angela Henderson, director of policy and impact at the SLDO, said: “People with learning disabilities are more likely to be affected by multimorbidity than the general population and die prematurely, often from treatable or preventable causes.
- Care for people with learning disabilities should be moved closer to home
- Patients locked away in safe hospitals for decades
- The latest headlines from Scotland
“These include epilepsy, respiratory disease deaths and deaths related to gastrointestinal problems.”
She added, “These are all very preventable and highly treatable.”
The SLDO said the preventable deaths among children and adolescents could be related to a number of factors, including:
- Challenges in accessing quality healthcare
- Communication barriers in health appointments
- Lack of awareness of the specific health needs of young people with learning disabilities
Another key issue raised in the study and seen by BBC Scotland is ‘diagnostic shadowing’ – where clinicians can mistakenly assume that symptoms of a disease are related to a person’s learning disabilities rather than a specific health problem.
“Efforts to reduce the health inequalities that lead to the unnecessary deaths of children and young people with learning disabilities must be a priority,” said Dr. Laura Hughes-Mccormack, who led the study.
Jenny Whinnett, whose son Craig died of pneumonia aged 21, believes he should have received better care to protect his shape.
“He enjoyed life very much,” she told BBC Scotland.
“He loved all the things that a normal young person his age would love to do, but he had profound and multiple learning disabilities,” she said.
Although Craig would have died young due to his poor health, Jenny, from St Cyrus in Aberdeenshire, believes he could have lived longer and with less pain.
“As he got older, he suffered from terrible breathing problems [with] squeezing his organs inside due to the distortion of his body shape,” she said.
“Craig should not have endured this ordeal with pneumonia at the end of his life. He shouldn’t have suffered the ailments I knew he suffered towards the end of his life because of the distortion in his body.”
She added: “I think if we had known that and I had gotten some nighttime posture support for him much sooner, I don’t think his body distortion would have been as severe.
“There is a real possibility that he would have lived longer and I think he would have been more comfortable.”
In a bid to tackle the health inequalities faced by the learning disabled community, the Scottish Government earlier this year announced £2million funding for annual health checks for people aged 16 and over with learning disabilities.
However, it was the last British nation to introduce such controls.
“We had to get this right,” said Kevin Stewart, the Scottish Government’s social security secretary, adding that he was “concerned about these health inequalities”.
“We have done all the work needed to research and pilot all of this and we are now in a position to serve our learning disabled populations across Scotland,” he told BBC Scotland.
He added: “This is the right thing. I think these resources are absolutely necessary and we hope this will make a real difference to the health of our learning disabled population.”
Keith Lynch, who has a learning disability and is director of People First Scotland, said people with learning disabilities need to be taken seriously for health checks to be effective.
“I would welcome it, as long as it’s done the right way, in an accessible way for people with learning disabilities,” he said.
He said people with a learning disability are not always taken seriously by the medical profession.
“To me, I don’t always seem to understand what the doctors are saying to me, although I ask them to speak in small, simple words so I can understand them,” he said.
“They just keep talking in long words that we call jargon, and that’s the same experience for other people with disabilities, so they often get confused.”
He added, “I would appreciate it if doctors and nurses took the time to get to know a person with learning disabilities over a long period of time, rather than being passed on from one person to another.”
The Scottish Government said it would support health workers in carrying out the new checks.
Add Comment