Eradicating health inequality for autistic people and people with a learning disability
3 min read
NHS England must involve autistic people and their families in the development of the autism mental health care pathway and put them at the centre of any reforms that they are leading, says Lord Touhig.
Last week, NHS England published their Learning Disability Mortality Review which found that one in eight deaths of someone with a learning disability involved ‘failings’, ranging from abuse to delays in treatment. The review was prompted by cases like the tragic death of Conor Sparrowhawk, who had a seizure while alone in a bath under NHS care in 2013.
As a vice-president of the National Autistic Society, I’ve been pushing for a similar review looking specifically at autism. Research from Sweden suggests that epilepsy and suicide are among the leading causes of premature death among autistic people and, while we can’t directly extrapolate the results to here, we have little reason to think it will be any different in the UK.
It is a topic that understandably causes emotions to run high among autistic people, those with a learning disability and their families and needs to be handled with great care and sensitivity. Nevertheless, it’s crucial that we look at some of the reasons why autistic people can struggle to access health services and then start to address them.
For example, many autistic people don’t see their GP or, when they do, their GP too often doesn’t understand how to communicate with them. Without that basic access to primary care, health conditions like asthma, diabetes, heart disease or even cancer can go unidentified and unmonitored. That’s why the National Autistic Society, working with Parliamentarians, are calling for autism to be recorded in GP records to make sure that autistic people’s needs can be better met by their family doctor.
For people on the autism spectrum, getting a timely diagnosis is crucial. Research from Goldsmiths and City Universities indicated children are having to wait, on average, 3.5 years for a diagnosis and adults are having to wait two years.
Diagnosis is often the key to unlocking the right care and support and, while I welcome the Government’s decision to properly record and publish waiting times, a data point alone won’t tackle these unacceptable waits. To address this the Government should review and introduce a new maximum waiting time standard for diagnosis.
Autism is not a mental health condition, but more than 70% of autistic children develop mental health problems during their childhood, with adults also reporting similar levels, and this is a key driver of the health inequality that autistic people face. Autistic people often struggle to find mental health support and it’s clear that for the 700,000 autistic people in the UK, traditional mental health services aren’t meeting their needs.
Responding to this crisis, NHS England have promised to include an autism mental health care pathway from 2018. However it’s now May and there is no indication what this pathway will include and how it will work. Crucially, NHS England must involve autistic people and their families in the development of this pathway and put them at the centre of any reforms that they are leading.
One thing is clear, when we talk about ‘health inequality’ as it effects autistic people and those with a learning disability, we are not talking about just a lack of exercise or a bad diet. We are talking about people failing to get the support from our National Health Service that you and I take for granted, with the consequence that too many are dying sooner than they should. Why? Because they are autistic or because they have a learning disability. Early intervention, adjustments to treatment, development of new pathways with those it effects, are all things the Government can do today in order to address the crisis.
Lord Touhig is a Labour member of the House of Lords.
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