In this blog, Mary Schumm, Certitude’s Director of Learning Disabilities, reflects on the shocking things she has learnt from the recent Learning Disability Mortality Review report and how we can do better moving forward.
Fact: people with learning disabilities face poorer health outcomes and shorter lifespans than the general population.
The Learning Disability Mortality Review (LeDer) programme was set up to look at the causes of death for people with learning disabilities. It looks at how we can change services locally and nationally to reduce health inequalities. By finding out more about why people die we can understand what needs to change to make a different in people’s lives.
The fourth and latest LeDeR report has just been published and makes for stark reading. The latest report told me a number of things I already knew, and some that I didn’t.
I did know that on average people with learning disabilities die around 25 years younger than the general population (22 years younger for males, 27 years younger for females). Or read another way – 85% of the general population in the UK make it to 65 and over compared to only 37% of people with a learning disability.
I also knew that people with a learning disability from BAME groups die at disproportionately younger ages than white British people. I didn’t know the actual statistics: of those who died in childhood (ages 4-17 years), 43% were from BAME groups. This is a shocking statistic.
Treatable health conditions
I knew that people with learning disabilities were more likely to die from treatable health conditions than the general population. But the actual statistics? A third (34%) of deaths of people with learning disabilities in 2019/2020 were from treatable medical causes, compared to 8% in the general population – a four-fold difference. Again, this is shocking.
I did know that one of the most common causes of death in people with a learning disability is pneumonia and aspiration pneumonia. I didn’t know that tooth decay caused by poor oral care is associated with pneumonia. This is due to increased levels of oral bacteria in the saliva. Tooth decay is a treatable condition. The risk can be minimised in the first place with good oral care.
I did know a little bit about sepsis. Sepsis is something called septicaemia or blood poisoning. It is a life-threatening reaction to an infection. It happens when your immune system overreacts to an infection and starts to damage your body’s own tissues and organs. In 2018, sepsis was identified as the second leading cause of death (of those reviewed as part of the LeDeR programme) for people with learning disabilities. Very sadly, I also know of several people we have supported over the last few years who have died after having sepsis.
What we can do to address these stark inequalities
At Certitude, we take the health and wellbeing of people with learning disabilities who we support very seriously. We recognise that we play a vital role in ensuring that people with learning disabilities receive the same standard of health care as everybody else. It is our responsibility to learn about the health conditions people have or may be prone to so we can ensure the best health outcomes for them.
We must advocate strongly, ask questions, have open dialogues and work in partnership with health professionals. But we must also challenge decisions we don’t feel are right and have the confidence to seek second opinions.
We are developing a health and wellbeing policy that sets out how to support people to have the best health outcomes. We are re-establishing our Health Group to include people with learning disabilities and family members. The Health Group will generate ideas to support people to improve their health and wellbeing. It will also review the actions we are taking on this and hold us to account.
We need to do everything we can to turn the tide on the terrible findings set out in the LeDer report so we can support people with learning disabilities to lead healthier, happier and longer lives. NHS England has released an Action from Learning report that we will be referencing to make sure we learn from these new findings.
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