Our Chief Executive, Lesslie Young looks at research conducted by the Scottish Learning Disability Observatory (SLDO) which focussed on research into deaths of children with learning disabilities living in Scotland.

The most recent epilepsy Cross-Party Group meeting at the Scottish Parliament focussed on research into deaths of children with learning disabilities living in Scotland. The research was conducted by the Scottish Learning Disability Observatory (SLDO).

The SLDO is a Scottish Government funded research centre at the University of Glasgow, whose main function is to provide large scale population data on the health and wellbeing of people with learning disabilities in Scotland.

The SLDO analysed pupil census data to understand deaths in children with learning disabilities in Scotland.

Their research showed there are 157 deaths per 100,000 in children with learning disabilities compared to 12 deaths per 100,000 in the general pupil population in Scotland. On average, children with learning disabilities died two years younger.

Following analysis and standardisation, the rate of death was 12 times higher in children and young people with learning disabilities compared to the general population. For girls and young women with learning disabilities, risk of death was 17 times higher than the general population.

The most startling finding of this research is that many of these deaths were considered to be avoidable.

The most common causes of death in children and young people with learning disabilities included epilepsy, respiratory infection, aspirational pneumonia, and digestive conditions like gastro-oesophageal reflux disease (GORD) or gastroenteritis. Epilepsy and pneumonia often combined and resulted in a cluster of deaths.

The treatment gap

Pneumonia is often treatable with antibiotics. It is hard to understand why any child in Scotland is dying of such a treatable illness. However, this is the case and so little is being said about it.

Why? If this were any other section of society, those without learning disabilities, I have no doubt this would be all over the news and cause outrage.

Similarly, it is concerning that epilepsy is listed as one of the main causes of death in this population. Studies have shown six out of 10 children with epilepsy become seizure free after treatment.

It is hugely distressing so many children are dying because of their epilepsy when so many are avoidable.

Why is this being allowed to happen?

Is it the case people with learning disabilities have poorer access to medical care and treatment? If so, why?

Is it the case people with learning disabilities are not treated as early or rigorously? If so, why?

Is it the case learning disabilities make these conditions more difficult to treat? If so, why?

Or is it simply the case, those with a learning disability are being subjected to yet another inequality? If so, why?

Yet more questions, even more inaction

I welcome this research by SLDO. It is comprehensive in its methods and provides much needed large-scale Scotland data on children with learning disabilities.

I am also pleased SLDO are working together with the learning disability policy team at the Scottish Government to help create policies which one would hope will reduce this mortality rate.

Yet, I fear the lack of individual, collective and sustained challenge to what these figures illustrate will result in our children continuing to die of preventable causes.

How we react to and challenge injustice undoubtedly shapes whether the situation improves or worsens. We must all use our voice to protect the lives of children living in Scotland.

To read the full research paper please click here.