A Scottish Learning Disabilities Observatory

It’s learning disability week 2015 and a good time to publish the first blog of the Scottish Learning Disabilities Observatory!

Lots of you will already know that Glasgow University was funded to set up a specialist public health observatory for Scotland focusing on people with learning disabilities  – there are plenty of references to it in The keys to life – but it is probably fair to say that many won’t really know a lot more than that.

So why do we need a Scottish Learning Disabilities Observatory?

A good starting point would be to take a look at Improving Health and Lives, (IHaL) the English learning disabilities observatory. IHaL was set up after an independent inquiry into the healthcare of people with learning disabilities in England recommended that a specialist Public Health Observatory be established to support improvements in the health and healthcare of people with learning disabilities. IHaL opened its doors in April 2010 and since then has been at the centre of activity relating to the health of people with learning disabilities. They have published lots of excellent resources and most notably collaborated on the Confidential Inquiry into Premature deaths of People with Learning Disabilities (CIPOLD). This inquiry looked at the deaths of 247 people, aged 4 and above, with learning disabilities and found that males and females with learning disabilities died much earlier than those in the general population in England and Wales. They found that deaths from treatable conditions/illnesses were also much more common for people with learning disabilities and also that other factors relating to the way care was provided made a much bigger contribution to the deaths of people with learning disabilities than they did to the deaths of people in a comparator group who did not have learning disabilities.

The results of the confidential inquiry are shaming and call on us all to be outraged and mobilised to act to avert the unnecessary premature deaths of more people with learning disabilities. The fact that this research identified poor quality health and care as a major contributing factor to the deaths of people with learning disabilities is deplorable.

Sadly there are numerous recent and harrowing examples of unnecessary, premature deaths of people with learning disabilities that provide the real life and death stories behind this research. When Sara Ryan talks about the death by drowning, in an NHS Assessment and Treatment facility, of her beautiful son Connor you are hearing about the tragic consequences of not listening to family members. Despite being told by Connor’s family about his current and increasing epileptic seizure activity, Connor was left unsupervised in the bath.  A subsequent investigation found that Connor’s death was preventable and that there were significant failings in his care and treatment.

In Scotland the findings published in the CIPOLD report have been a key determinant of the strategic focus on health inequalities for Scottish learning disability policy. Michael Matheson, the Minister for Public Health in 2013 when The keys to life was published was unequivocal when he said that equality and acceptance mean “…having a health service that recognises and redresses the stark fact that people with learning disabilities still die 20 years earlier than the general population.”  The Scottish Learning Disabilities Observatory has been set up to “…..robustly underpin health improvement and to address health inequalities.” This mission is fundamental to delivery of the strategy in Scotland.

Before I tell you a little about our plans it is probably helpful to try to describe the job of a Public Health Observatory (PHO). PHOs have developed around the world with a mission to “…provide health intelligence (information, data, knowledge and evidence) that results in local, evidence-based action for a defined population.” (WHO, 2014) Helpfully the World Health Organization commissioned some analysis of the objectives, mission and functions of a number of PHOs in order to build a conceptual framework that could be developed into a practical guide. Very timely from our point of view and definitely worth a read!

In essence then the Scottish Learning Disabilities Observatory will provide the evidence that organisations, practitioners, and policy makers can use to make evidence-informed decisions that underpin health improvement and the reduction of health inequalities for people with learning disabilities. Our remit is wide and the issues are complex. To be successful we must take a holistic and inclusive view of health that captures the complex interactions of multiple factors influencing individual health.

The exchanging of knowledge across a wide spectrum is key.  We need to include the voice of people with learning disabilities and their families and we need to ensure that the information we produce is relevant and accessible. We need to listen to and engage with practitioners and produce information and resources that are relevant and can support the development of a workforce that is empowered by access to high quality evidence. We need to work alongside organisations, commissioners and policy-makers to support decision making and, if necessary, the structural change that will underpin equal access for people with learning disabilities to the highest standards of health, care and support possible.

Thanks for reading!

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