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.
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.