Health Inequality: Autism and Learning Disabilities

Lord Touhig Excerpts

Thursday 10th May 2018 Grand Committee

Asked by

[Lord Touhig]

To ask Her Majesty’s Government what steps they are taking to eradicate health inequalities for autistic people and people with learning disabilities.

[Lord Touhig (Lab)]

My Lords, more than 10 years ago, Mencap launched a report entitled Death by Indifference. It was part of a campaign made necessary by the ongoing poor treatment of people with learning difficulties in the health service. The report highlighted the serious consequences of poor healthcare through the tragic stories of six people: Emma, Mark, Martin, Ted, Tom and Warren. Mencap wanted the world to know that their deaths were senseless and could have been avoided.

Just last week, the Learning Disabilities Mortality Review Programme report, commissioned by NHS England, was published. It again highlighted the deeply concerning figures on the life expectancy of people with learning disabilities. It showed that women with a learning disability are dying 29 years before women in the general population, and for men it is 23 years. This is truly shocking and demands urgent action. This and previous research have shown that people with a learning disability are four times more likely to die from causes that were amenable to good-quality healthcare.

A YouGov survey of 500 healthcare professionals last year, commissioned by Mencap, found that almost a quarter had never attended any training specifically on learning disability, that two-thirds wanted more learning disability training, and that more than half thought that more on-the-job learning disability training would enable them to provide better support to people with learning disabilities. Almost two-thirds said a lack of practical resources for themselves and their colleagues might also be contributing to the problem. Most concerning was that more than a quarter thought that negative attitudes towards people with a learning disability might be a contributing factor in avoidable deaths.

On that point of negative attitudes towards people with disabilities, I highlight the case of Ann Grant. She says:

“I have been to hospital lots of times and had good and bad experiences … I had a good experience of going to hospital when having an operation on my knee. The learning disability nurse helped by giving me some easy-to-read information about what would happen. The doctor explained things in a way I could understand and the nurses looked after me. This was a good experience because all the staff communicated well and took the time to help me. But in 2016, I had to go to accident and emergency, and the receptionist did not understand my needs. I kept having to repeat myself which made me feel very anxious. I asked if I could go and wait in a quiet space but there wasn’t anywhere to go. They told me to wait outside if I wanted to have space. The doctors were not very good and gave me information which was different to what the nurses had told me. They changed my medication and did not clearly explain what I needed to do. It was very difficult to understand the words they used, especially the jargon. If they would just take some time to explain things better, I would know what to do”.


That is not an untypical case. Mencap recently launched the Treat me well campaign, which makes six suggestions. I have given the Minister a copy and I hope he will give the Government’s view when he responds.

I move on to the issue of eradicating health inequalities for people with autism. Autism, as we know, is not a mental health condition. It is perfectly possible to have autism and good mental health but more than 70% of autistic children develop mental health problems at some point in their lives. Problems such as anxiety and depression can be key drivers of the stark health inequality that autistic people face.

In its report, Personal Tragedies, Public Crisis, the autism charity, Autistica, highlights research from Sweden that suggests that suicide is a leading cause of premature mortality in autistic people in that country. It calls for action in the UK. These findings deserve close attention to ensure that autistic people are not subject to unacceptable health inequality.

In 2016, NHS England published The Five Year Forward View for Mental Health, which outlines how it plans to improve mental health services in England. It includes a number of proposals for new care pathways to help people access the right support. Importantly, it proposes a care pathway for autism. Work on designing the pathway is due to start in 2018, but we do not yet have any details of what it will include.

The National Autistic Society, of which I and the noble Baroness, Lady Browning, are vice-presidents, believes that the care pathway must cover the age range of children, young people and adults on the autism spectrum. It should include timely access to autism diagnosis and autism training for all mental health staff, and make reasonable adjustments to mental health treatments. It should also identify what works and share best practice. It needs to account for the fact that mental health needs may present differently in autistic people. It should be developed in partnership and co-operation with autistic people, their families and organisations that support people with autism. Can the Minister confirm that the autism care pathway will be developed? Will it cover the age ranges that I have mentioned? Will it cover diagnosis, access to tailored mental health support and autism training—three key points?

More needs to be done to improve GP recording of autism. The National Autistic Society has called on the Government and NHS England to improve the recording of autism in GP records, which was also reflected in the Government’s Think Autism adult strategy. This will have two key benefits. GPs will be better able to make reasonable adjustments for autistic people and be better equipped to support their autistic patients. Secondly, anonymised data from GP records will give a picture of the health—including mental health—needs of autistic people. This will be crucial in addressing health inequalities and help to make sure that the right support is put in place at the right time. Similar initiatives have been used to support people with a learning disability, asthma and diabetes.

NICE has recommended that this be put in place by creating an indicator in the Quality and Outcomes Framework. I hope the Government and NHS England will accept this. The Minister may have something to say about this when he responds.

I have one final point. I am not alone in encountering countless stories of problems getting a diagnosis for anyone with autism. People wait years for a diagnosis. It is a disgrace. Putting a stop to such delays should be a major priority of all of us in Parliament and government: 61% of people who responded to a National Autistic Society survey said that they felt relieved to get a diagnosis and 58% said that it led to them getting new or more support. That is important. It adds to the quality of their life. Will the Minister include autism diagnosis waiting times in the CCG improvement and assurance framework? It would be a very good step forward.

Our fellow citizens living with autism and learning disabilities face challenges to their lives that most of us in this Room never encounter, but they are truly amazing people. All they ask is to be treated as equals and to be given the same chances and opportunities that you and I take for granted and a chance of a full and happy life. Surely they deserve the care of a first-class NHS service. That is not too much to ask, is it?