Adult Autism Strategy

Jamie Reed Excerpts

Wednesday 5th March 2014 Westminster Hall

[Mr Jamie Reed (Copeland) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Clark. I will be fairly brief, after an excellent debate. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this important and timely debate. Her close links with this important issue were demonstrated emphatically by her bringing forward the Autism Act 2009, and her work on that legislation should be commended. It is worth mentioning that the 2009 Act is the country’s only piece of disability-specific legislation, and the fact that it reached the statute book is a credit to not only the right hon. Lady but the hard work of Members from all parts of the House.

In preparation for the debate, I have immersed myself in the Official Report of the Autism Bill’s passage through this place. Although there were some disagreements, for the most part the debate was incredibly consensual, and the tone of today’s debate has been similar. The legislation has achieved a great deal, and I pay tribute to all Members who were involved. I have often said, particularly in Westminster Hall debates, that Parliament is at its best when we can put partisanship aside to achieve shared goals. The 2009 Act is a clear example of that. It is an Act of Parliament of which all Members, especially the right hon. Lady, can be proud.

Section 1 of the 2009 Act placed a duty on the Secretary of State to prepare and publish an autism strategy, which had to include a plan for meeting the needs of adults in England with autism, and a plan for improving the provision of appropriate services by local authorities and the national health service. My right hon. Friend the Member for Leigh (Andy Burnham), then Secretary of State for Health, published a strategy on 2 March 2010 called “Fulfilling and rewarding lives: The strategy for adults with autism in England”. That joined up all aspects of Government, with no fewer than seven Government Departments contributing, ranging from the Department of Health through to the Department for Communities and Local Government and the Ministry of Justice.

As colleagues have mentioned, the strategy heralded a new approach across Government, transforming the way that public services supported adults with autism, as well as illustrating what Whitehall can achieve when departmental silo thinking is rightly jettisoned. Despite some meaningful progress since it was published in 2010, there is clearly much work to be done. A report by the National Autistic Society revealed that 92% of adults with autism said that they needed some degree of support, yet 70% said that they were not receiving the support they needed. That meant that almost eight in every 10 people who were not receiving support were forced to rely on their parents.

In his foreword to the 2010 strategy, my right hon. Friend the then Secretary of State for Health remarked that

“Autism is sometimes described as a ‘hidden disability’, not only because it has no physical signs, but also because adults with autism are some of the most excluded, and least visible, people in the UK.”

The testimony we have heard this morning underlines that reality. My right hon. Friend also stated that people with autism have been falling through the cracks between different organisations. The 2010 strategy has done much to identify those adults who need support, and improvements are being made, but it is clear that the new autism strategy must look to build on that progress.

Since the 2009 Act and the strategy in 2010, there has been considerable change. Sadly, that has not been consistent throughout the country, and many adults are still not receiving the care or support that they need. Levels of change, and action on necessary improvements, have not yet been sufficient; I do not think that there is any disagreement on that. The forthcoming updated strategy is an opportunity for the Government to maintain national leadership on implementation, and to guide local authorities to enact effective changes and improve services.

It is clear that the identification of those with autism is essential to the success of any strategy, and, to that end, it is right that those in public services are given the tools and knowledge that they need to identify people who may need support. That could mean GPs, other health care workers, police officers, teachers, bus drivers—as we have heard mentioned—or MPs. As a Member of Parliament, I see more and more people in my surgeries who either present at some point on the autistic spectrum or have family members or friends who do.

Although the strategy refers specifically to adults, one key way to ensure that adults are given the support they need is to ensure that they are given the support they need as children. The classroom offers a lot of contact between teachers and pupils, and that relationship is extremely important. Properly trained teachers could identify the needs of children earlier, meaning that proper support systems can be put in place as a child reaches adulthood. That is so important—it is vital.

As a parent, I see my children’s primary school making real headway in that regard, but provision in secondary education appears insufficient. I fear that secondary schools in particular too often miss an opportunity with regard to pupils with autism, and that is a great shame. I hope that the Minister will attempt to allay that fear, particularly given the advent of changes in our education system—free schools and more—that have accelerated the use of non-qualified teachers. Will he tell us how the needs of autistic pupils are being safeguarded in the new educational landscape?

As I bring my remarks to a close, I want once again to pay tribute to the right hon. Member for Chesham and Amersham for securing this debate, and for all her work on this issue over many years. I also pay tribute to all the Members who have contributed to this excellent debate. I hope that the Minister can shed some light on the few issues I have raised. We are striving for the same ends, and there is a remarkable crossover in the means by which we want to achieve them. We have the opportunity for a strong political consensus on this issue, and it is one that I sincerely hope we do not waste.

--- Later in debate ---

[Norman Lamb]

I absolutely agree that the NHS ought to be an exemplar employer. I suspect that the truth is that it is variable, with areas of good practice, but we do not know enough about the position throughout the NHS. The message should go out from this debate that the NHS has an obligation to lead by example and to demonstrate what can be done. Several hon. Members made the point that employing someone with autism might be quite challenging to start with, but the potential that that individual can offer is often enormous. An organisation could end up with a loyal employee who can contribute massively. The NHS needs to demonstrate that by leading from the front.

Everyone with autism should be

“able to live fulfilling and rewarding lives within a society that accepts and understands them.”

That was at the heart of the “Fulfilling and rewarding lives” strategy, and I stand firmly behind it. Furthermore, the work of the National Autistic Society’s “Push for Action” campaign has been hugely valuable in helping the Government to focus on the issues that need to be considered. I pay tribute to the society for inspired leadership. Other organisations have worked with us as well, including the Autism Alliance, Autism Plus and Ambitious about Autism, and I pay tribute to the work of all those organisations.

During our review, we ran a comprehensive exercise to listen and learn how the strategy is working. Nearly 2,000 people, including some on the autism spectrum and some who are involved in planning, commissioning and providing services, took part in focus groups, events and conferences, and more than 1,100 people with autism took part in an online survey. Local authorities worked with their partners and local people to complete a self-evaluation exercise on their progress. All this information, including individual returns, will be made available by Public Health England when the update of the strategy is published. As well as cross-departmental discussions, there has been contact with the different parts of the United Kingdom to discuss all four strategies, including that of Northern Ireland, to find common ground and to improve standards across the board.

Foundations for change have been laid and people with autism have increasingly been engaged locally in planning and designing services. Clear national guidance has been issued on the care, management and diagnosis of autism. We have heard about some great experiences that people have had in further education or with particular employers. My hon. Friend the Member for East Worthing and Shoreham made a good point about the need for employers to take the lead and to demonstrate best practice.

In some areas, there are great local autism teams and excellent diagnostic services. I noted what my right hon. Friend the Member for Chesham and Amersham said about her area and the GP who was taking the lead in that county to commission services. That is exactly what needs to be happening everywhere. I also heard of some great services being provided in Swindon, so there are some good things happening, but it was only five years or so ago that low levels of awareness and a lack of services were what led to the Autism Act, back in 2009. There are some real successes, but there is also much more to do to see the foundations translated into a greater difference to peoples’ lives.

When I have talked to people with autism and to families at events that have taken place during the review, I was struck by how variable the position is. In some areas, very little has happened. We now have the legislation in a good place and a good strategy, which is being updated, but translating that into a difference to people’s lives is where an enormous amount of work still needs to be done.

[Mr Jamie Reed]

When the Minister comes to publish the refresh of the strategy, will any care be given—as it should, in my view—to the understanding of NHS front-line staff, in particular in emergency medicine, and their identifying patients with autism? I have a series of examples from my constituency of people with autism accessing emergency services, receiving suboptimal care and getting into some pretty dangerous situations.

[Norman Lamb]

The hon. Gentleman makes a good point. I was going to come on to give an example of that. Sadly, we have also heard from many people with autism, and their families and carers, that things have not yet changed enough, or at all, for them. Gaps in provision or waits for diagnostic services continue to be reported. As my hon. Friend the Member for South Swindon made clear, diagnosis is the start of what can then happen; it is a condition precedent to an improvement in someone’s life, and is of course not enough in itself. Many people have told us that they have skills to offer employers that they cannot use. That is totally frustrating for them, and a waste for the individual and for the economy, as my right hon. Friend the Member for Chesham and Amersham made clear.