LIfe expectancy is lower for people with learning difficulties - in part due to lack of access to healthcare
Two of Scotland’s leading charities have launched a new resource to help improve healthcare for people with learning disabilities.
The current life expectancy for people with learning disabilities is 13 years lower for men and 20 years lower for women than for the general population.
Evidence suggests that one of the reasons for this is lack of access to general healthcare.
The new ‘7 Steps to Equal Healthcare’ resource from charities Enable Scotland and Macmillan Cancer Support aims to equip healthcare professionals to support people with a learning disability.
The resource follows a one-year study commissioned by Macmillan and conducted by Enable, which observed the experiences of people who have a learning disability and are affected by cancer in some way, either through having cancer themselves or being close to someone who has cancer.
The observations were used to inform the resource and tools for healthcare professionals, encouraging them to consider the best way to communicate with patients with learning disabilities, their approach to describing and administering treatments and liaison with support networks such as family members or carers.
The themes discovered through the research highlighted that the issues people with learning disabilities experienced with their healthcare were not specific to cancer but were related to a lack of person-centred healthcare and the ability to deliver equity of healthcare.
For this reason, the 7 Steps to Equal Healthcare have been designed to be useful to healthcare professionals and individuals with learning disabilities regardless of what healthcare treatment or care they are receiving.
Theresa Shearer, chief executive of Enable Scotland, said: “Receiving a diagnosis can be extremely difficult and daunting for anyone, but for someone with a learning disability it can be even more distressing than for others. They may be informed of their diagnosis or consequent test results at a health appointment but may only fully understand what’s shared with them later on, when they’re in a different location, sometimes on their own and without the appropriate support.
“Following our extensive study into the experiences of people with learning disabilities affected by cancer, the launch of this resource marks an important milestone in ensuring access to equal healthcare for all.”
John Feehan 45, from Prestwick (pictured) who has a learning disability and is supported by Enable Scotland, was diagnosed with Hodgkin’s lymphoma in 2007. He said: “When I started feeling ill, I visited my GP several times, but no-one picked up on how serious my illness was. Eventually, it started affecting every area of my life to the point where I was too ill to do everyday tasks.
“I told I had Hodgkin’s lymphoma after I tried to go on holiday and the airline said I was too unwell to fly. It was a really anxious time. I was in hospital surrounded by people I didn’t know, worrying about things like my car and my cat. I was in shock when I was told I had cancer and it took a long time to process what it really meant.
“Luckily, two volunteers from the Ayr and District Enable branch stepped in to help me. They asked questions and took the time to find out what was troubling me most.
“People who have learning disabilities have a right to equal healthcare, and that means people who work in health and social care need to understand that some patients, like me, will need a bit of extra support during medical appointments and treatment.
“If sharing my experiences to develop this resource helps just one person with a learning disability to face cancer head on, then it’ll be worth it.”
