Adult Autism Strategy

Norman Lamb Excerpts

Wednesday 5th March 2014 Westminster Hall

[The Minister of State, Department of Health (Norman Lamb)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate, but more particularly on her brilliant work over the years to secure the 2009 Act and the strategy that followed it. I know from my ministerial role that she continues to show an interest and pursue the case for change, and that is incredibly valuable.

Ministers are normally under pressure to respond to requests for meetings, but although I have not had one today, I would like to offer my right hon. Friend the chance to come to the Department, before we reach the final point of the refreshed, revised strategy, to discuss where we are going with it. My hon. Friend the Member for South Swindon (Mr Buckland) spoke passionately as well. I was with him yesterday at a meeting of his all-party group on autism, and he should be part of the discussion. Other Members are welcome too—that would be very valuable.

[Mrs Gillan]

rose—

[Mr Buckland]

rose—

[Norman Lamb]

I will give way to both colleagues, but first to my right hon. Friend the Member for Chesham and Amersham.

[Mrs Gillan]

I thank the Minister for his generous offer. He took the thought out of my head, because I was going to ask whether my hon. Friend the Member for South Swindon (Mr Buckland) could accompany me, alongside someone from the National Autistic Society. That offer will be taken up, and communities across the country will appreciate that. Even if the Minister is unable to meet all the demands we have set out today, it is important that he can set out a path forward, so that we can achieve what we have been asking for across the board, so I thank him for his offer.

--- Later in debate ---

[Norman Lamb]

I thank my right hon. Friend for accepting my offer, and now give way to my hon. Friend the Member for South Swindon.

[Mr Buckland]

I am grateful to the Minister. I will not take up his valuable time, but I want to thank him for the meeting he had on the strategy the other day with me and my hon. Friends the Members for Salisbury (John Glen), and for Cambridge (Dr Huppert). We have already started the work here in Westminster, and I am very grateful to the Minister for agreeing to a further meeting with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) to push the agenda forward.

[Norman Lamb]

I acknowledge my hon. Friend’s comments. I share the shadow Minister’s view that this issue is entirely bipartisan. There is a massive need to change and increase society’s understanding of autism. Awful things so often happen through ignorance of autism and the entire spectrum. It is crucial to raise awareness, as several Members have said.

My right hon. Friend the Member for Chesham and Amersham raised a number of queries about whether the revised strategy would reinforce the points from the original strategy, and I can confirm that it will do so on all the points she mentioned. It must also go further and look into other areas.

My hon. Friend the Member for South Swindon talked a lot about the criminal justice system, and we must look at how we can improve things there. He made the point that someone with Asperger’s is seven times more likely to end up having some contact with the criminal justice system. We have started to roll out the Government’s liaison and diversion service, which I announced back in January. By 2017, we aim to have a nationwide service for people with mental health problems, autism and learning disabilities who end up in the criminal justice system, often inappropriately and unnecessarily. Getting people diverted to diagnosis, which Members have talked about, and to the right treatment can often prevent further offending and potentially thereby transform someone’s life while protecting others.

[Mr Buckland]

I pay tribute to the Minister for the mental health pilot schemes that are being introduced in Wiltshire and other places; they were recommended by the Bradley review some time ago. Does he agree that community psychiatric nurses need training, particularly in cases of comorbid autism and mental health conditions, which are sadly quite common? We must ensure that the pilot covers autism when it comes to the diversion at the police station.

[Norman Lamb]

I absolutely agree with my hon. Friend. I wanted also to touch on the point made by my hon. Friend the Member for South West Bedfordshire (Andrew Selous) about the parents of adults with autism who, far too often, are told by clinicians that they cannot talk to them about their adult child’s circumstances. Clinicians often hide behind the absolute importance of confidentiality about a condition in order to refuse to talk at all to the parents—the people who know the individual better than anyone. That is an attitude of mind among too many clinicians. It has to change.

I also wanted to refer to the points made by my hon. Friend the Member for Strangford (Jim Shannon). I think I can call him my hon. Friend. [Hon. Members: “Hear, hear!”] Thank you for that. He talked about the pressure on families, and he is absolutely right. Whether one is talking about learning disability, autism or dementia—there are parallels with dementia—the need to raise awareness in society is real. I am also happy to look at the Northern Ireland legislation and at what lessons can be learned throughout the jurisdictions.

Another point in response to the debate was to do with transition. Whether with mental health, learning disability or autism, we so often find that disasters happen at the age of 18. My hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) alluded to that important point. Too often, people are lost to the system. The age of 18 is the worst possible age to withdraw support, whether we are talking about mental health in general or autism in particular.

[Robert Halfon]

I thank my hon. Friend the Minister for giving way. I gave the figure of 85% of people with autism not having full-time employment, and I mentioned the apprenticeship for autism started by my charity, PACT for Autism. Will the Government’s apprenticeship ambassador, my hon. Friend the Member for Harrogate and Knaresborough (Andrew Jones), who is present, work with the Minister with responsibility for apprenticeships to look at introducing such a scheme and rolling it out across the country?

[Norman Lamb]

My hon. Friend beat me to it, because I was about to refer to his comments on apprenticeships. I am interested in that. I am proud of what the Government have done on apprenticeships in general, but their use for people with autism is an interesting area. I noted the points he made about the scheme in his local area, and I am happy to consider it further.

[Mr Burrowes]

On incentivising employers and leading by example, the Government, in the NHS, are among the biggest employers around and will no doubt want to be an autism-friendly organisation and employer. Does the Minister have any information about how autism-friendly the NHS is in employing people with autism? Will he look into how the NHS can take a lead by doing that?

[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.

[Mrs Gillan]

The Minister has slightly moved on from the point that I wanted to make, but I will make it nevertheless. Will he also look at an initiative that the NAS and I took in my constituency with some parents of children who have autism? I brought them together with the clinical commissioning group in a non-crisis atmosphere, because most of the contact with parents and families with autism happens when they are in crisis. We held a meeting in my office in a non-crisis environment and it was helpful to have an exchange in a calm atmosphere about the issues and problems faced by those individuals and families. They were able to put those across to the CCG and the local authority, which meant that the professionals were then so much better equipped to know what such families and individuals are facing, and to give them the help and assistance that they require. Will the Minister also look at that as a model to roll out across the country?

[Norman Lamb]

I would. Bringing people with autism and people who use services together with those who are commissioning the services is a necessary condition for any good commissioning, but far too often it does not happen. As my right hon. Friend has demonstrated, there is a role for us here: we can act as local champions to bring people together and put pressure on institutions to change attitudes. I very much share that view.

We are in the final period of finalising the update to the strategy and are giving active consideration to ideas that others have contributed, such as the innovation fund, which my right hon. Friend mentioned, to help develop good practice, and an autism awareness scheme to help local volunteers and community groups. Autism should not be seen as an add-on to services or work programmes, and with well over half a million people on the autism spectrum, everyday services will already be seeing or in contact with many people who have autism. Thinking about and engaging with those people more effectively and making reasonable adjustments or adaptations to existing services will lead to better outcomes for people and a better use of public resources, as other hon. Members have said.

Monday was NHS change day. I was made aware, via Twitter, of a short video about a doctor’s pledge to ensure that instructions given to patients are clear and not ambiguous. The video followed a girl called Lucy who has autism. After a consultation in a room in a hospital, she was told to wait outside A and E, and so went outside the building, because she had taken the instruction literally, and sat waiting for hours outside in the cold in the car park, left entirely on her own. I encourage hon. Members to watch it: it lasts about 30 seconds and was distributed via Twitter. That simple and straightforward pledge, made by a doctor who recognised that there had been a complete failure by his service, will help to raise awareness within the service and increase understanding of autism. The hon. Member for Stretford and Urmston (Kate Green) made the point that this is not just a matter for the NHS; other organisations such as banks and other financial institutions have a responsibility to see how they need to raise awareness among their staff.

Many of the changes under way in public services, such as increased personalisation and choice for individuals, are essential to giving people with autism the right kind of support. Support for people with autism may not require huge budgets to achieve improvements, and much can be achieved with a degree of creativity, flexibility and determination.

This issue is relevant not only to health and care, however. Again, we can draw a comparison with the dementia situation. The Prime Minister’s challenge on dementia is about how not only health and care services but society need to change, and how we need to raise awareness across society. The same applies for people on the autism spectrum. It is about changing people’s lives, both where they live and where they work. We know that so much more could be done to promote autism awareness, but our society is becoming more aware of autism. We hear about local schemes to make parts of the community more accessible and welcoming to people with autism. For example, as was referred to earlier, cinema screenings are being made autism-friendly by simple adjustments such as having the lights on low and the volume turned down.

Services based around low-level interpersonal support, such as buddying schemes, have enabled adults with autism—including people who do not qualify for support from their local authorities—to participate in different social and leisure activities and have promoted social inclusion. The example of the special showing of a musical in London is a good demonstration of an organisation prepared to go the extra mile to make life enjoyable for people in those circumstances. Exactly the same can be done for adults as for children, as my hon. Friend the Member for South Swindon said.

The Care Bill also puts a duty on local authorities to develop preventive services for people within communities. The shadow Minister and I have been devoting a lot of our time to the Care Bill. It is great and groundbreaking legislation that puts a focus on individuals’ well-being and happiness. If we can change the way in which organisations such as local authorities behave towards people with care and support needs, so as to focus on their well-being and not the needs of the institution, we can effect real change.

The Children and Families Bill will bring significant improvements to the transition of young people with autism from school, through college and into adult life—a point made by the shadow Minister. It will introduce education, health and care plans for people from nought to 25, which will put greater emphasis on long-term outcomes for young people. We know that caring for someone with autism can be extremely rewarding, but it can also be incredibly challenging, both emotionally and financially. The changes to carers’ assessments that will be introduced if the Care Bill becomes law will ensure that many more carers can get support.

It is also important to improve training on autism for front-line public service staff, a point raised several times in our debate. Since 2010 we have worked with a range of organisations to produce a comprehensive set of resources for staff in the health and care sector. Health Education England has a role to play, along with initiatives from the royal colleges, such as the Royal College of General Practitioners, whose adoption of autism as a clinical priority from April this year is very much to be welcomed. The regulations to support the Care Bill will also require community care assessors to be suitably trained—again, an issue raised in our debate. Having autism-aware police officers, courts and probation services can make a great difference. The existing statutory guidance made it clear that autism training should be available to all staff working in health and social care.

To plan effectively, local authorities need access to data on numbers and needs that are as comprehensive as possible. From April this year, as an outcome of the zero-based review of adult social care data, they will have to record a person’s primary reason for support and any health conditions that person may have, including autism. That provides a basis for possible future measures on autism in the adult social care outcomes framework.

A key challenge for many older adults with autism is that they will have had significant support from their families, but as families age that becomes less possible. We are considering how to build on the recent NAS report that followed work by the House of Lords autism and ageing commission.

As we have heard, most people with autism want to work, and have skills and talents that would be incredibly useful in the workplace. The policy paper “The disability and health employment strategy: the discussion so far” outlines a more personalised and tailored approach to employment support for disabled people, including people with autism. As well as challenging negative behaviours and attitudes, the Disability Confident campaign launched last year by the Prime Minister is designed to help employers who are unsure about the benefits of employing disabled people.

Adults with autism are entitled to benefit from all the Government’s wider initiatives to get working-age people into employment. The Department for Work and Pensions is aware that more can be done to help people with autism make the most of those programmes and of themselves. Only this week, the DWP held an event with my Department and the NAS, for people on the spectrum and for employers, to improve people’s experiences in applying for jobs at the jobcentre and with employers.

We are only at the beginning of the journey to improve all aspects of the lives of people with autism, including when they are seeking employment or are in education, as well as the support they get in health and social care. We need to continue with concerted action and commitment both nationally and locally to make a difference. The update of the 2010 strategy will mark the next step in that journey, but there is still a long way to go.