World Autism Awareness Week

Norman Lamb Excerpts

Thursday 28th April 2016 Commons Chamber

[Mrs Gillan]

Absolutely. It is clear that, despite the best intentions of the Government, getting such a diagnosis is still crucial, as my hon. Friend says.

[Norman Lamb (North Norfolk) (LD)]

Will the right hon. Lady give way?

[Mrs Gillan]

I will give way for the last time, because I must make some progress.

--- Later in debate ---

[Norman Lamb]

May I join in with the overwhelming tributes that have been made to the right hon. Lady for the work that she has done on this incredibly important subject? I do not know whether she saw the in-depth report in The Economist a couple of weeks ago. It reported that a Swedish study has found that the cost of lifelong care for someone with autism could be cut by two thirds with early diagnosis and treatment. Again, the moral case and the economic case for this are overwhelming.

[Mrs Gillan]

I agree. NHS England should collect, publish and monitor key information on how long people are waiting for diagnosis, and how many people are known by their GP to have autism. It should also ensure that waiting times standards on mental health, which are currently in development, reflect national guidance that no one should wait longer than three months between referral and being seen for diagnosis. The Government must share this commitment and ensure that NHS England meets its aims. Timely access to an autism diagnosis should be written into the Government’s mandate to NHS England.

I want to touch on autism and mortality. A recent Autistica report highlighted distressing findings from research in Sweden. The research found that autistic people, taking the population as a whole, have a lower life expectancy than the overall average. The research from Sweden shows that autistic people are at risk of dying younger from almost every cause of death. On average, this is 18 years earlier than the general population. For autistic people with a learning disability, the gap is even larger. The research shows that autistic people with a learning disability in that country die on average 30 years before their time. It also shows that autistic people who also have a learning disability are more likely to die early from epilepsy, and that those without a learning disability are at greater risk of suicide. It is worth remembering that the Swedish healthcare system is different from ours, but given the seriousness of those research findings, it is vital to find out whether they also apply in the UK, and if so, to understand the reasons for that. The Autistica report calls for this to be investigated as a matter of urgency, and I urge the Government to heed that call.

I want to comment briefly about the autism hospital passport, which has been endorsed by the Department of Health. The passport is designed to help people on the autism spectrum to communicate their needs to doctors, nurses and other healthcare professionals. It has been developed by Baroness Angela Browning in collaboration with the NAS. The motivations for starting the project were simple: when it comes to healthcare, the passport enables people on the spectrum and their families to have a much better experience of their interaction with the health service and to gain better, more timely and more fitting healthcare at the right time and in the right place.

I want to touch on various areas that I hope other Members will pick up, so I now turn to education. In specialist schools—the NAS is about to open a new one in the Epping forest area, supported by the Anderson Foundation—we have no fears about teachers’ ability to understand autism. But the training that teachers receive on autism has to be looked at carefully. Nearly 60% of children who responded to a survey said that the single factor that would make school better for them was if teachers understood autism. Teachers agree, and they want that training. A 2013 survey by the NASUWT found that 60% of teachers believed that they did not have enough training in autism. I am aware that work is going on to develop a new framework of core content for initial teacher training courses, but we need to make sure that no teacher enters the classroom without the tools they need to support those in their charge.

An intervention touched on employment, so I turn now to what children on the spectrum want after they leave education. They want the same things we all want out of life: stable, secure and fulfilling opportunities that allow them the same opportunities to lead independent lives. However, currently too few people on the spectrum enjoy the opportunity to find a job to help them maintain that independence. The Government have pledged to halve the disability employment gap—that was welcomed by Members on all sides of the House—and we await the Government’s White Paper, to be published soon; we also note recent assurances from the Secretary of State for Work and Pensions that that is a key priority for him. However, research by Scope has shown that the disability employment gap has remained static over the past year. Clearly the Government cannot rely on an improving economy alone to fix the issue. More will need to be done to close the gap.

The autism employment gap is even worse. The latest data indicate that only 15% of autistic adults are in full-time paid work at all and that 26% of graduates on the autism spectrum are unemployed, by far the highest rate of any disability group. The NAS hears from autistic people that the Government’s mainstream generic programmes do not feel relevant to them and are not addressing the specific and long-term needs of people with autism.

More autism-specific programmes are needed. Research shows them to be more successful. For example, research into one specialist support scheme found that 70% of adults found work when supported by autism professionals. The all-party parliamentary group on autism plans to return to that work later this year. In the meantime, I have several questions. Will the Government’s disability employment White Paper include proposals for ensuring that people on the autism spectrum can access specialist support? Will the Minister report on progress by condition in seeking to halve the disability employment gap, so that low employment rates of people with conditions such as autism can be specifically tackled? Crucially, will he ensure that the new work and health programme records whether someone on the programme is on the autism spectrum?

Autism touches so many areas of Government work that it is difficult to address them all today. For example, I have not discussed social care, mental health issues or benefits. I know many colleagues want to speak and so I do not want to take up too much more time. In summing up, I return to public awareness. Survey after survey of people on the spectrum tells us that better understanding of the condition among both the public and professionals would be the one thing that would help them to feel more secure and allow them to have fulfilling lives. People on the spectrum are reasonable, and do not expect an ordinary member of the public with no knowledge of the condition to be aware of technical details about the diagnostic criteria for autism. However, they feel that just a little more understanding, compassion and awareness would make all the difference to their lives. If we see a child having a meltdown in a supermarket or an adult acting a bit differently on a train, we should stop and think for a moment. They may be autistic, and need our kindness, not our judgment.

I thank all the organisations that have contributed to the knowledge of Members here today, in particular those charities and groups with whom we work closely, including the National Autistic Society, which provides the secretariat for the APPG, Ambitious about Autism, Autistica and the Children’s Services Development Group. I also thank the many individuals who have got in touch with me, and with all other Members here, in the past week. I hope that together we can improve the lives of those with autism and make some real progress in this area.

--- Later in debate ---

[Norman Lamb (North Norfolk) (LD)]

I have done it already, but I will do it again because everyone is doing it: I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on her leadership on this matter. What she has been involved with, and what we are all involved with as a society, is learning how to understand autism much better and recognising that we fail people badly through our ignorance of the potential and capacity of people with autism to lead fulfilling lives and to contribute massively to society. The hon. Member for Livingston (Hannah Bardell) and the right hon. Member for Clwyd West (Mr Jones) made the point strongly that there is much that people with autism can do in the employment sphere. They can be fantastic employees, contributing a great deal and leading fulfilling lives, but we often fail them. Also, it costs the Government and the economy a great deal when people with autism end up depending on the state because we have failed to provide them with the necessary support early on. That is the big challenge.

[Mrs Gillan]

I notice that we have just been joined on the Front Bench by my hon. and learned Friend the Member for South Swindon (Robert Buckland), who was my predecessor as chair of the all-party parliamentary group on autism. I want to pay tribute to the work that he did. I also want to stress that in bringing in the Autism Act 2009 and in securing this debate today, I was supported by many other Members across the House. It was not just me on my own; it was a real team effort.

[Norman Lamb]

That brings me nicely on to my next point, because I was going to say that this is not one Government’s responsibility; we all have to learn and understand more. The article in The Economist made clear the strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the Government have to respond. That is the challenge. This Government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.

[Hannah Bardell]

The Library briefing paper states that

“the Government does not collect data specifically on employment rates for people with Autistic Spectrum Conditions”.

We should campaign, cross-party, to change that and work with business to get interviews that are friendly to those on the autistic spectrum.

[Norman Lamb]

I totally agree with that. As a former Minister, I recognised during my time in the Department of Health that, whether it be mental health, autism or learning disabilities, we operate in a fog. There is an absence of data that have been analysed and understood. If we are to make the improvements of which we are capable, we have to understand the evidence, which involves the collection of data.

I want to highlight the failures of society and the extent to which we treat people with autism as second-class citizens by referring to two cases. The case of Connor Sparrowhawk, who tragically lost his life through drowning in July 2013, has been much documented recently, and his mother, Sara Ryan, has been an amazing campaigner, fighting for justice. The Oxford Mail reported this morning about a recently leaked report, produced for the NHS trust some 11 months before Connor lost his life, that demonstrated failures of care in his unit. The article states:

“The report found Slade House was particularly poor, flagging up issues with a ‘lack of clarity of care plans’, ‘no clear understanding of a ‘locked door policy’

and so on. What is the point of commissioning reports at enormous expense if their conclusions and recommendations are ignored?

There has been great focus this week on the importance of the accountability of public bodies following the shocking conclusion of the inquest into the Hillsborough tragedy, but that importance stretches across all public bodies and into healthcare. It is important that organisations recognise their responsibility to involve the families of those who lose their lives in investigations and to have an open and learning culture, rather than a closed culture that excludes families. The trust’s treatment of Sara Ryan in the investigation of Connor’s death has been truly shocking. There must be accountability and a willingness to learn from mistakes and to take account of any recommendations.

As we try to get people out of assessment and treatment units, where they are often left for too long, the Health & Social Care Information Centre has found that 15% of the transforming care cohort, of which the Minister will be aware, have autism and no learning disability and that 23% have autism and a learning disability. When looking at the transforming care partnership plans and the outcomes for individuals, it is important that the Department ensures that the specific needs of autistic people are included and addressed.

Finally, I want to refer to the case of an extraordinary constituent of mine. A nine-year-old boy wrote a letter for his parents to take to a meeting that I had on his behalf with the authorities at Norfolk County Council, and he ended up being interviewed—at the age of nine—on the “Today” programme, and it was a remarkable interview. He movingly wrote in his letter:

“I normally say to myself you have to keep on going. I normally also say ‘is it worth it’. I could just kill myself. I wouldn’t have to face today.”

That comes from a nine-year-old boy. His family has been left waiting some two years for a diagnosis without any real support. They have been told that he does not meet the threshold for care from the Child and Adolescent Mental Health Services. Other hon. Members have highlighted similar cases, with the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan) talking movingly about her experience, for example. The family, by borrowing from relatives, have managed to pay for some support for their little boy, but what about all those families who cannot afford it? It is intolerable. We cannot justify a society in which children get help if they have articulate parents or parents with money, but where those without go without.

As we seek to implement maximum waiting time standards in mental health, something which I have made my mission, my plea to the Minister is that we include autism and follow the NICE guidelines that the first diagnostic assessment should start no later than three months after GP referral—not 36 months, as I am told is sometimes the case in Norfolk, or 24 months, as in many other parts of the country. The result will be that society and the Government will save money in the long run if we make the investment in diagnosis and treatment at an early stage.

--- Later in debate ---

[The Minister for Community and Social Care (Alistair Burt)]

It is just about 24 years since I first walked into Richmond House as Parliamentary Under-Secretary at the then Department of Social Security. In that time, I have had the privilege of being involved in many debates that belie the common view outside this place that we either know nothing about a subject or are not personally involved and do not care. I would put this debate right up there with the very best that demonstrate that neither of those things is true.

We have heard remarkable speeches, including 25 Back- Bench contributions, which is a tribute both to colleagues and to the Chair. As the hon. Member for Liverpool, Wavertree (Luciana Berger) mentioned, it is impossible to cover everything, or even everyone’s speech, as we normally do, but the contributions from my hon. Friend the Member for Berwick-upon-Tweed (Mrs Trevelyan) and the hon. Members for Birmingham, Yardley (Jess Phillips), for Stalybridge and Hyde (Jonathan Reynolds) and for Angus (Mike Weir) were particularly noteworthy in giving a sense of what things must be like. We are indebted to all of them for being able to say what they said in the way that they did.

I want to mention a couple of other speeches, such as that of the right hon. Member for North Norfolk (Norman Lamb). I am trying to do something about the fog, and I will mention that a little later, and many of us heard the moving and difficult story of the nine-year-old boy. The hon. Member for Barrow and Furness (John Woodcock) talked about the media response, and both the programme and the book he mentioned will make a significant contribution. I thank the hon. Member for Dulwich and West Norwood (Helen Hayes) for the way in which she brought the young man’s case to me, and I assure her that it is not all done and dusted yet. Some very difficult aspects of that case worried me hugely, and we will be talking about it further. I made absolutely certain that the parents were involved in the case review, because, as she and the right hon. Member for North Norfolk said, all too often people are not involved and are somehow excluded, and that has got to stop. It is vital that people will be thoroughly engaged.

I wish to start by commending the Member who moved the motion—I cannot remember who that was now. [Laughter.] Let me add my congratulations to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on the extraordinary work she has done over the years in this area. We really are all indebted to her. In a recent Adjournment debate, I recognised the need for a fuller discussion and mentioned that we could do with this debate, and I am grateful that we have had that opportunity today.

A number of hon. Members have highlighted the importance of recognising that autism is not a person’s defining characteristic. Many colleagues, particularly those with children, made moving points about the qualities that autistic people have, and that is very important. In a couple of weeks’ time, I am going to the Hitchin LEGO club, which was started by parents of a child whose particular skills related to detail and the bits and pieces the club does. I am looking forward to going to see that. It is important that we do not just define people in this way, and the changes we make every day to attitudes, services and facilities can mean the difference between ambition thwarted and opportunity fulfilled. The best campaigns, at least those intended for the benefit of the common good, are led not from the top or from some central point of government, but by people on the ground.

Autism awareness is being addressed directly by the National Autistic Society in its excellent new campaign, which was launched during world autism awareness week and to which I gave my support. I went to see not only the little boy who is the subject of the film, but his family, because there are often siblings of those who have autism and they need to be cared for and valued as well. Sometimes issues can arise in that regard. It was nice to see the whole family and it is a remarkable piece of film. I also wish to highlight the work the Department of Health has taken forward with the Autism Alliance UK, a large network of autism charities, on the “Connect to Autism” project, which encourages local organisations, services and companies to become autism champions by training staff in autism awareness—there is a lot more to do.

I have no time to deal with all the subjects that have been raised, but in accordance with what has become my usual practice, because I seem to speak in vastly oversubscribed debates, I will pick out the questions that colleagues have raised and answer them by letter. If colleagues do not mind, I will answer them in the same letter and then put a copy in the Library, so that everybody will get a chance to see all the answers to the various questions that have been raised, which my hard-working team have noted. Let me just say a couple of things in answer on the key issues of what the Government are doing, and of diagnosis and data.

First, although it is easy sometimes to be overwhelmed by what there is still to do, it is important to recognise where we have come from—many Members made that point—and to realise what we are doing on a day-to-day basis. I commend to the House the “Progress Report on Think Autism: the updated strategy for adults with autism in England” which was published in January. I put that together along with the Under-Secretary of State for Disabled People, my hon. Friend the Member for North Swindon (Justin Tomlinson), the Minister for Children and Families, my hon. Friend the Member for Crewe and Nantwich (Edward Timpson) and the Under-Secretary of State for Justice, my hon. Friend the Member for South West Bedfordshire (Andrew Selous), who deals with prisons, probation, rehabilitation and sentencing. It sets out progress against 33 of the “Think Autism” actions and describes some of the work going on across government, because it absolutely involves education, employment and all sorts of other things. The report details case studies and it demonstrates what is being done in different places around the country.

Let me come straight to the challenge of diagnosis, which is so important to many Members. There is no doubt that, in some parts of the country, the demand placed on services—it is often the sheer weight of numbers—means that the NHS and its partners can struggle to meet the standards set out by NICE. The Department of Health’s mandate to NHS England for 2016-17 calls on the NHS to reduce health inequality for people with autism. Waiting too long for a diagnosis can be one of the health inequalities that autistic people face. The mandate has already got that, and it is very important that it relates to autism.

Clinical commissioning groups and NHS England are working to bring down the waits in line with NICE guidelines. What is happening right at this moment is that the Department of Health and NHS England, supported by the Association of Directors of Adult Social Services, have initiated a series of visits to CCGs and local authorities. The visits aim to develop a better strategic oversight of the challenges in securing timely diagnosis across all ages and to share good practice. In essence, that means that we should look at the variability in diagnosis times and do something about it. Sometimes there is an issue of capacity. It is not a question of just pulling a lever and the waiting times will come down. For waiting times to make any sense, we must recognise the capacity to deal with them. NHS England is trying to understand the difference in variation in order to do something about it.

NHS England will complete its work this month and then report to the cross-Government Adult Autism Programme Board in June. That report and the discussion at the board will be made public. The Department of Health is also funding the University of York to report on the type of support that is available after a diagnosis.

My right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) asked that NHS England should collect, publish and monitor key information on how long people are waiting for diagnosis and how many people are known to their GP to have autism. She said that waiting times standards on mental health, which are currently in development, should reflect national guidance that no one waits longer than three months between referral and being seen for diagnosis. I can assure Members that I am keen to ensure that we collect more data and that the data are made public. I am keen that the NHS collects what is known locally and finds a way in which we can use that nationally. New datasets have been put in place—I will say something about them in a minute—but it is important that we acquire more data. I have been made aware of that matter and I am trying to do something about it.

[Norman Lamb]

rose—

[Alistair Burt]

I will take just this one intervention, because I am on a tight timetable.

[Norman Lamb]

Will the Minister consider setting a maximum waiting time standard of three months to enter diagnosis? We all know that once we set a standard, the system responds to it, and we need that for anything to change.

[Alistair Burt]

I do understand that, but, equally, the capacity has to be there to do the job. It is a fine balance. To set a waiting time limit as some sort of token, knowing that it cannot be reached, would not work. Equally, the pressure on the system through collecting data, asking for data, and seeking transparency has its effect as well. There is a real sense in the Department that we have to meet that challenge, and I am looking at what data can best be collected, what data need not be collected centrally, but can be handled locally, and how we make the difference and how that is transparent and made known.

The Department of Health does not set out how NHS England should monitor waiting times. How NHS England holds commissioners to account is for it to determine, though it will need to demonstrate effectiveness in meeting the mandate requirement through which we expect NHS England to strive to reduce the health gap between people with mental health problems, learning disabilities and autism and the population as a whole. Even now, in the configuration of the NHS, the NHS does not directly report to me on this particular issue. I am really interested in how the NHS ensures that CCGs are doing their job, and I suspect that Members of the House are very interested, too. I can use that concern and interest and make sure that that monitoring job is done and that it is transparent.

My right hon. Friend also mentioned GPs. GPs already maintain a register of people with learning disabilities, which may include patients on their lists who also have autism where this has been diagnosed. As a number of Members mentioned, autism may not be the only condition that an individual may have.

The Royal College of General Practitioners’ autism initiative, part-funded by my Department, is looking at the idea of an autism indicator in general practice. That work is at an early stage. I hope that is helpful to my right hon. Friend. As recommended by the independent Mental Health Taskforce, the Department of Health is developing a five-year plan for the development of mental health data, to be published by the end of this year. The plan will set out future data requirements and timings for developing data to inform pathways of care, which will include data requirements for autism. This will be of great interest to the hon. Member for Liverpool, Wavertree, and I will make sure that she keeps up to date with data, as she keeps me up to date with data requests.

This has been a terrific debate which has covered many different aspects. To sum up, autism should never be a barrier to enjoying the access and opportunity afforded to others. The National Autistic Society, the Autism Alliance, the all-party parliamentary group on autism and many other charities are doing great work, helping more of us realise that sometimes we are the barrier, beyond legislation. It is only through empathy and understanding that true progress can be made and sustained.

Finally, there are two quotes that everyone should take from this debate—first, “Everybody feels like it’s a fight.” I have heard that too often, as too many of us have. Everything the Department does must make that sense of fight a little easier, until no one needs to fight because their needs are taken for granted. Secondly, “Think differently about thinking differently”—absolutely. That is what we should all do. I hope that that is a message from a very consensual House of Commons this afternoon.