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We all matter, so why do we allow people with a learning disability to die young?

Like many fathers, I look at my three children and wonder what their futures hold. I want them to be happy, I want them to wisely choose their life partners, careers, pastimes. I want them to live life to their fullest potential... and I want this equally for all of them. They all matter. 

My eldest child has a learning disability and needs constant care and support. She matters too... and equally to the others. She can't tell us verbally when she is ill... but she does tell us, through a range of non-verbal communications we have learnt over many years. Health professionals will never know this language as we do, so our opinions as family members become extremely important. However, my experience is that family carers are often not treated as experts. Instead, we have to battle to avoid health needs being overlooked. 

Part of the problem is that our society views learning disability and autism as diseases. They have been 'medicalised'. Healthcare professionals begin to see only the disability and miss other important issues. I would encourage everyone to challenge the term 'diagnosed with a learning disability'... which only serves to medicalise further. 

Detailed information from organisations like Public Health England and NHS Digital is now showing us the extent of health inequalities. There is more morbid obesity, poorer uptake of cancer screening programmes, and further confirmation that people with learning disability are dying 15-20 years prematurely from preventable causes. 

But things are changing. The National Diabetes Audit recently reported care of people with learning disability who have diabetes is actually better than for the general population. This month, GPs have additonal incentives to offer high-quality annual health checks for adults and adolescents with a learning disability, and people of all ages are already entitled to and receiving free flu immunisations. Soon all deaths of people with learning disability will be reviewed as part of the emerging Learning Disabilities Mortality Review and Learning from Deaths programmes. 

However evidence suggests tackling health inequality also requires us to understand and address social factors. A research team at University College London is currently working to invesitgate impacts of these on people with learning disability. In particular, they are now looking at how other countries address social issues to see if there is anything we in the UK can learn. 

Change is often slower than I and others wish, but clear vision, persistence and relentless determination will deliver, and has to... because we all matter.

Dominic Slowie

National Clinical Advisor (Learning Disability & Premature Mortality) and was National Clinical Director for Learning Disability 2013-2016 

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