Health Inequality: Autism and Learning Disabilities

Lord O'Shaughnessy Excerpts

Thursday 10th May 2018 Grand Committee

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)]

My Lords, I congratulate the noble Lord, Lord Touhig, on calling for this debate and on his good grace in agreeing to meet ahead of it so that we were able to discuss some of the issues that have been raised today. I hope to answer as many questions as I possibly can. I also congratulate all noble Lords on their contributions, some of which were very personal. Whether it is a family experience or the experience of people we know, have met or have communicated with, it brings gravitas to a debate. I congratulate Mencap and the National Autistic Society on the quality of their briefings and, if nothing else, on making sure that government is kept honest in its attempts to address the needs of this group.

Noble Lords have set out the many challenges that people with learning disabilities and autism face in leading healthy and productive lives. We have talked about inequalities in health and well-being compared to those without learning disabilities or autism; comorbidities, and particularly mental health needs; great difficulties in accessing health and social care support, as the noble Lord, Lord Touhig, and the noble Baroness, Lady Thornton, and others brought to life through their experiences and the stories they told; difficulties in fulfilling educational potential; and difficulties in securing employment.

The sad fact is that people with a learning disability are more likely to experience major illnesses, to develop them younger and to die sooner. Those are the bald facts. Autistic people are also at increased risk of dying younger and have a higher risk of developing mental health problems and conditions such as epilepsy, diabetes and heart disease. They are less likely to get the screening, checks and treatment they need. They continue to face barriers to accessing services and information. My noble friend Lord Sterling talked about the impact on families: it affects not just the individual concerned but everyone around them. Such inequalities are deep rooted and we have not only a moral obligation to tackle them but, as the noble Baroness, Lady Meacher, pointed out, an economic rationale as well. I agree with the noble Baroness, Lady Jolly, that we need to start from the position of rights: the right of these individuals to enjoy the same standard of health and care as everyone else.

I will set out a few of the things that the Government are doing to try to improve outcomes for this group and then will address questions posed by noble Lords. My noble friend Lord Astor of Hever mentioned the NHS mandate, which is an important place to start. It sets out our ambition and expectation to reduce the health gap between people with mental health problems—who are not the direct focus of today’s debate—learning disabilities and autism and the population as a whole, and support them to live full, healthy and independent lives. The learning disability annual health check is a big part of meeting this aim, in looking for undiagnosed health conditions early and promoting the uptake of preventive care. As the noble Lord, Lord Addington, pointed out, as a group, they are not necessarily that good at coming forward to seek support or to express their needs. NHS England has increased the funding available for GPs for these health checks and there is an ambition to significantly raise the number of people benefiting from them.

We did unfortunately have cause yesterday to discuss the first annual report from the learning disabilities mortality review. I say unfortunately, because, as many noble Lords have pointed out, it sets out the scale of the challenge that still exists to reduce early deaths and health inequalities for this group. The fact of the programme is in itself progress, but the number of deaths reported, and indeed those which have been reviewed and are of concern, is still very high. This demonstrates how much more work there is to do. I did commit in the House yesterday to NHS England and the department working together to try to take forward all the recommendations in that report, as far as we can. It has been noted by the noble Baroness, Lady Hollins, that this is not the first time these recommendations have been made.

Some of the action taking place includes publishing data for the first time on avoidable deaths, including those of people with learning disabilities. Trusts will be inspected against their learning and the changes they have made from studying these avoidable deaths. In answer to the question from the noble Baroness, Lady Hollins, NHS England has provided additional funding for this year. I should say at this point that it has not ruled out funding for future years. The point here is that we need to get up to speed on the backlog of reviews that are taking place and make sure that that is fully embedded in the NHS.

NHS England and the RightCare programme are also producing guidance on pathways of care tailored to the needs of people with learning disabilities, including for diabetes. There are further pathways coming soon on epilepsy, sepsis and respiratory conditions.

The noble Lord, Lord Addington, and the noble Baronesses, Lady Hollins and Lady Meacher, all mentioned training. That is a critical point. There is a training and education framework for people with learning disabilities for use by health and care staff, and there is one to follow for autism training. That builds on the tiered approach that has proved successful in training all staff for dementia and is being rolled out at the moment.

I would like to address the particular issue raised by the noble Lords, Lord Touhig and Lord Crisp, the noble Baronesses, Lady Thornton and Lady Meacher, and my noble friends Lord Astor and Lady Browning—by pretty much everybody: the autism pathways that were mentioned in the five-year forward view for mental health. These pathways are being developed for both adults and children. Specifically, they are for those with a mental health diagnosis with neural developmental comorbidities such as autism. They are about the two things happening together, rather than simply for people with autism alone. That makes sense, because this is about access to mental health services. We have been pressing NHS England for a timeline in the run-up to this debate. I regret that I do not yet have that, but I will continue to press for it and will share news on our progress with noble Lords as soon as I get it.

Some of the other ways in which we are acting to try to reduce that health gap include the wonderfully named STOMP programme—stopping overmedication of people with a learning disability, autism, or both with psychotropic medicines. A pledge to stop overmedication has been signed by 24 professional royal colleges and societies, which have all developed clear plans to deliver on this, and by over 150 social care providers supporting 50,000 people with learning disabilities, autism or both. That is good progress. It is fair to say also that the Improving Access to Psychological Therapies programme has adapted its standard intervention for people with learning disabilities and autism. NHS England is working to update its framework for community mental health services for this particular group.

Many noble Lords have talked about the issues around delayed diagnosis. It was touched on by the noble Lord, Lord Touhig, and my noble friend Lady Chisholm. There is an ongoing review of the quality and outcomes framework by NHS England, which is looking at implementing the NICE recommendation about putting a flag effectively on the record. I do not have a publication date for that but I reassure noble Lords that I will write to them once I do. We also have for the first time autism indicators in the Mental Health Services Data Set, collected from 1 April this year, which is bringing more transparency to the process and helping us improve performance locally.

My noble friend Lady Browning mentioned the Autism Act, which remains the only condition-specific legislation in England. I hope that the consequent adult autism strategy represents to her a clear commitment by the Government to change the way that we support and provide services for adults on the autism spectrum to address those inequalities. I reassure her about the seriousness with which the Government undertake those actions.

While we are talking about schooling, it is worth touching on special educational needs, although it is not necessarily a topic for today. My noble friend Lord Sterling talked about getting the right support at an early age. The introduction of education, health and care plans as a consequence of the Children and Families Act 2014 was a major step forward. Ofsted and the Care Quality Commission are inspecting the arrangements that CCGs and local authorities have for those to make sure that we can improve performance and drive out variation. I am aware that there is huge variation across the country in both the availability and quality of such plans.

While we are talking about education, several noble Lords—the noble Baroness, Lady Scott of Needham Market, the noble Lords, Lord Crisp and Lord Addington, and my noble friend Lady Browning—talked about the issue of advocacy. I absolutely applaud the work that Ace Anglia is doing and the production of easy-read materials. The noble Baroness asked what government can do to support that process. Training, which we have touched on, is one thing, but there is also clearly a role for government funding—I know that the Government have supported the Autism Education Trust to support the development of training for school staff. I think that will provide some reassurance to my noble friend Lady Chisholm, who also asked about the training of school staff.

The noble Baroness, Lady Meacher, also talked about education. I do not know about the work of June Felton but it sounds interesting. My first ever role in education was as a governor of a special school in Wandsworth called Garratt Park School, which has an autism base, and I eventually became chair of governors there. The quality of a good intervention and what it can do for children’s lives is truly dramatic. Indeed, another school in that area is the former Rainbow School, which supports very autistic children with behavioural approaches and which has changed their lives. That school lodged with us for some time at one of the free schools I set up, so I had the opportunity to see that in action, and it does amazing stuff. The links between health and education are absolutely there, which is what the EHC plans are meant to be bringing together.

I will finish with a few more points that I have not touched on yet. On delayed diagnosis, which was raised by the noble Lord, Lord Touhig, from April NHS Digital has been collecting autism diagnosis waiting time data, so that that is now visible, and the autism strategy task and finish group is exploring how to use that data as part of a local accountability regime. So that is in progress, and I hope that we will see something positive emerge from that.

The noble Lord, Lord Crisp, and the noble Baroness, Lady Thornton, mentioned the Mental Health Act, which is an important issue. Professor Simon Wessely is chairing his independent review and has published an interim report—if noble Lords have not seen it, I encourage them to look at it; I will send them a copy of the report. It sets out some of the specific issues that need to be explored under that review for people with learning disabilities and autism, so I can reassure them that that is an explicit part of the work of that review.

The noble Lord, Lord Crisp, and the noble Baronesses, Lady Jolly and Lady Thornton, also mentioned eye care. If you think about the process of having your eyes tested and think about what that must be like for someone with sensory issues, with autism or learning disabilities, it is not a pleasant thought. An NHS working group is looking at this, and I am reassured to see that SeeAbility is part of that. They are looking at that, but if they feel that that is not going as it should, I would be grateful if they could write to me. The noble Lord, Lord Crisp, also mentioned the key issue of staffing, which is critical. We are trying to get more nurses into the NHS; having this golden hello for shortage areas, including learning disabilities, is a good step forward. There is a desire—my noble friend Lady Browning raised this—to increase the number of mental health staff so that we can start to meet some of the standards which we have set ourselves.

I hope that I have managed to answer all questions noble Lords have posed. Again I thank the noble Lord, Lord Touhig, for instigating this debate. The noble Baroness, Lady Jolly, said yesterday that we should judge ourselves as a society on how we look after some of the most vulnerable people. This debate has brought the needs, challenges but also the opportunities and rights of this group to the fore. I reassure noble Lords that it is a major part of the Government’s policy and attention. We know that there is more work to be done; there are some good signs of progress, but there is clearly a lot more work to do together to make sure that people with learning disabilities and autism have the opportunity to lead a healthy, productive and independent life.

Committee adjourned at 6 pm.