Early Disabled Deaths

From the BBC:

“Warning over early deaths of learning disabled”

(Jenny Whinnett said her son Craig could have lived longer and with less pain if he had been treated differently)

Children with a learning disability in Scotland are more likely to die prematurely - often from treatable causes, a report has found. The Scottish Learning Disability Observatory (SLDO) study found that 34% of these deaths were avoidable. Previous research has found that adults with a learning disability were twice as likely to die from preventable illnesses. 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 experience higher rates of multi-morbidity than the general population, and die prematurely, often from causes that are either treatable or preventable. "These include epilepsy, deaths from respiratory conditions and deaths related to gastro-intestinal problems." She added: "These are all highly preventable and highly treatable."

The SLDO said the preventable deaths in children and young people could be linked to a number of factors, including:

Challenges accessing high-quality health care

Communication barriers during health appointments

Lack of awareness on the specific health care needs of young people with learning disabilities

Another key issue raised in the study, seen by BBC Scotland, is "diagnostic overshadowing" - where clinicians may wrongly assume that symptoms of an illness are related to a person's learning disability, rather than to 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 prioritised," said Dr Laura Hughes-Mccormack, who led the study.

'Enjoyed life immensely' Jenny Whinnett, whose son Craig died from pneumonia at the age of 21, believes he should have received better care to protect his body shape. "He enjoyed life immensely," she told BBC Scotland. "He loved all the things that a normal young person of his age would enjoy doing, but he did have profound and multiple learning disabilities," she said. Although Craig would have died young because of his health conditions, Jenny, from St Cyrus in Aberdeenshire, believes he could have lived longer and in less pain. "He suffered terrible respiratory problems as he got older [with] the squashing of his organs inside due to the distortion of his body shape," she said. "Craig shouldn't have had that ordeal with pneumonia at the end of his life. He shouldn't have had to suffer the discomfort that I knew he had because of the distortion of his body towards the end of his life." She added: "I think that if we'd had knowledge, and I'd been given night-time postural support for him a lot sooner, I don't think his body distortion would have been so severe. "There is a real possibility that he would have lived longer and I think he would have been more comfortable."

'Health inequalities'

(Keith Lynch said the medical profession often used jargon when talking to patients with learning disabilities)

In a bid to address the health inequalities faced by the learning disability community, the Scottish government earlier this year announced £2m in funding for annual health checks for learning disabled people over the age of 16. However, it was the last UK nation to introduce such checks. "We had to get this right," said Kevin Stewart, the Scottish government's social security minister, adding that he was "concerned about these health inequalities". "We have done all of the work that's required in terms of the research and piloting of all of this, and we're in a position now to deliver right across Scotland for our learning disabled population," he told BBC Scotland. He added: "This is the right thing to do, I think that this resourcing is absolutely what is required, and we hope that that will make a real difference to the health of our learning disabled population."

Keith Lynch, who has a learning disability and is the director of People First Scotland, said people with learning disabilities must be taken seriously in order for the health checks to be effective. "I would welcome it as long as it's done in the right way, in an accessible way for people with learning disabilities," he said. He said people with a learning disability were not always taken seriously by the medical profession. "For me, I don't always seem to understand what the doctors say to me, even though I do ask them to speak in small, plain, simple words so that I can understand," he said. "They just keep talking in long words which we call jargon, and that's the same experience for other people with disabilities so they're often left confused." He added: "I would like to see doctors and nurses taking time to get to know a person with learning disabilities over a long period of time rather than passed from one person to another." The Scottish government said it would be providing support to healthcare staff to carry out the new checks.

^ Any death is sad, but any preventable death is a shame. ^

https://www.bbc.com/news/uk-scotland-62725103