UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 1008-i

HOUSE OF COMMONS

ORAL EVIDENCE

TAKEN BEFORE THE

PUBLIC ACCOUNTS COMMITTEE

AUTISM STRATEGY

WEDNESDAY 27 FEBRUARY 2013

UNA O'BRIEN and SHAUN GALLAGHER

Evidence heard in Public

Questions 1 - 57

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Oral Evidence

Taken before the Public Accounts Committee

on Wednesday 27 February 2013

Members present:

Margaret Hodge (Chair)

Mr Richard Bacon

Guto Bebb

Jackie Doyle-Price

Chris Heaton-Harris

Meg Hillier

Mr Stewart Jackson

Sajid Javid

Fiona Mactaggart

Austin Mitchell

Justin Tomlinson

Amyas Morse, Comptroller and Auditor General, Gabrielle Cohen, Assistant Auditor General, Laura Brackwell, Director, NAO, and Marius Gallaher, Alternative Treasury Officer of Accounts, were in attendance.

REPORT BY THE COMPTROLLER AND AUDITOR GENERAL

Progress in implementing the 2010 Adult Autism Strategy

Examination of Witnesses

Witnesses: Una O'Brien, Permanent Secretary, Department of Health, and Shaun Gallagher, Director General, Social Care, Department of Health, gave evidence.

Chair: This is a good early action issue. We all have a lot of questions. There is a lot of interest around the Committee, but I shall ask Richard to start because he has been pursuing this issue with rigour.

Q1 Mr Bacon: Thank you very much, Chair. I know that I am not the only one; Fiona Mactaggart and Meg Hillier take a big interest in this as well. I apologise because I will have to leave for a broadcasting commitment in about half an hour.

The increased emphasis on devolved delivery and local accountability has meant that the Department now does not have a timetable in its ring-fenced funding-we were talking about that earlier. But plainly that doesn’t absolve the Department of its responsibility to ensure that taxpayers’ money is well spent. How will you hold local bodies to account for implementing the commitments in the autism strategy?

Shaun Gallagher: I should introduce myself as Shaun Gallagher. I am acting director general of social care, local government and care partnerships in the Department of Health. The commitment set out in the Government’s strategy, supported by the statutory guidance that was published a little bit after that, was for a mixture of people to take forward. Some of it is for national Government to take forward across the different Government Departments and some of it is for local authorities working with the NHS and other local Departments.

Mr Bacon: Would you speak up, please? The microphone is fine; you just have to push out of your diaphragm.

Shaun Gallagher: Apologies. As I was saying, some of the commitments set out in the strategy and the strategy guidance are for local authorities, NHS bodies and other local bodies to undertake. You are quite right that the Department of Health and the accounting officer in the person of Una retain accountability for the totality of the spend in its overall shape. But the accountability for local delivery lies increasingly with those local bodies in order to demonstrate that they are meeting their statutory responsibilities and to demonstrate that to their local population. In the case of local Government, that is under a democratically-

Q2 Chair: Can you answer the question, Mr Gallagher? Maybe Richard Bacon should ask it again.

Mr Bacon: My question was, how will you hold local bodies to account for implementing the strategy?

Chair: We know the structure. Una will have told you that we come back perennially to this. We know the structure; we are asking you on this.

Una O'Brien: In relation to health, it is the same answer as any money that goes down the health route, where we have a much closer accounting officer relationship. But in relation to spend by local authorities, that is exactly the same accountability relationship as for social care. We do not have a separate accounting officer arrangement for money that is spent specifically for people with autism.

Q3 Chair: If you look at figure 8 in the Report that has been prepared for us by NAO, it has all sorts of ifs and buts about it because it is unclear how the RAG ratings, i.e. how they are performing, are assessed and whether they are assessed consistently, which is another whole area. But, if I may say honestly to both of you, it is poor that so few have achieved progress on so many issues. At best, 20% of local authorities know how many adults with autism live in their area and allow for adults with autism in their service design. At worst, adults with autism achieve better health, which is the early action outcome you want, or adults with autism receive appropriate support in the criminal justice system, which is another early action you want. It is minuscule. If you give us these general things-I think this is why we obsess about it in this Committee-the truth is that you do not get real progress for real people living in communities with a condition that can inhibit them if they do not get the support.

Una O'Brien: I will say a few things, and then I will ask Shaun to comment. First, when I had my handover discussions with my predecessor, Hugh Taylor, this is one of the issues that we discussed. His experience of the NAO Report really bringing to light some of the damning evidence that was discussed at that time in 2009, and bringing forward the Autism Act and then the hearing he had here-I think some of you were at that hearing-had a profound impact on him. I certainly feel very responsible for taking forward this strategy. I am very pleased that we are going to be doing the review in 2013, because we absolutely need to get the strategy aligned with the changes that have been made through the reforms, and I think it presents us with some important opportunities.

In relation to the information in the table you are referring to, which is based on the self-assessment, it was the first time we had ever done it, and I absolutely hold my hand up to say we have learned about weaknesses in the methodology through the process of doing it and we will take whatever steps we need to tighten up on that methodology. One of the things we want to do next time is for the returns to be validated by people with autism and their families before they are sent back to us, so you cannot just fill it in and think, "Oh, I’ll send that old questionnaire back to the Department." The other thing that I am cross about is that not everybody filled it in. One of the things that Shaun and I have been talking about is what we are going to do to get a higher return rate, better methodology and some validation as to the veracity of the return for the next time around.

Q4 Mr Bacon: So that at some point, some time down the road in n years, you will have a better picture of how it is not working.

Una O'Brien: Not necessarily.

Q5 Mr Bacon: That is what it sounds like. It sounds very processy. It is good that you have information rather than that you do not have information. I was here when Hugh Taylor gave evidence and he was very passionate about it, and I was pleased to see that. I could not help noticing that one of the people from DWP, who was significantly more junior than permanent secretary level, spent most of her time as a witness trying, with her tin hat on, to keep from dropping her Department in it rather than engaging.

I particularly remember trying to get across the point that in a local service such as a jobcentre it is so important for everyone who works there to know that if you walk in and you are autistic there is a chance, because you do not like making eye contact, that you are more likely than average to look shifty. Ensuring that everyone knows that autistic people can often present in that way can be done using a 20-minute training video and a 10-minute discussion, or 10-minute training video and 20-minute discussion, and you can get everybody in a jobcentre up to speed. Instead of that, what you had was a 13-week training course on one particular benefit. A person who has been on that course cannot answer questions on any other benefit, and the person who can is not in because it is a Tuesday or there is an r in the month. Still, years later, we have not got to the point where everybody in a jobcentre understands that there is a thing called autism and that people behave in that way.

The position is similar in the criminal justice system. In figure 8 of the NAO Report, which the Chair quite rightly referred to, it is one of the worst areas; 29% of local authorities are shown in red, which indicates that they still have no plan. Apart from the fact that we have had a famous case of a person not being extradited, it is hard to think what has really happened in that area, even though you can identify where the courts are and who the magistrates and the judges are. It is a fairly discrete area where it would be fairly easy to make identifiable progress, and yet it is the one where the least appears to have happened. From what you were saying-you were talking about the need to get better information, but it did sound a bit processy-my fear is that several years down the line you could be saying, "We have got much better information about how bad things are, but things have not necessarily improved because we have not done enough to improve them."

Una O'Brien: I don’t look at it like that, actually. We started from a very, very low base just three years ago. We are also dealing with a particularly difficult area where there has been misunderstanding and a huge amount of public ignorance. We know that the challenge of raising understanding and awareness across hundreds of thousands of public sector workers is not something that is achievable that quickly. I think that Hugh used the phrase, "If I could wave a magic wand, I would put it right." I feel exactly the same.

In relation to evidence about how local authorities are doing, we have to be rigorous and persistent. That is why-if I may complete my view about what we are going to do next in 2013-we have to have a better methodology where we can understand. There is too much amber in this for me. I don’t know what that means. I do not know if it means that it is slightly not red or if it means that it is well on the way to green, and that is not good enough. We need a better methodology, and we need the information to be validated by people who can actually say, "That feels like it’s right to me." You drive improvement by having validated comparative information. You can also then target your conversations with the places that are really struggling. I know that it feels processy, but I cannot help being a civil servant focused on data and information, to the extent that we can do so, in order to get this thing moving much more swiftly.

You are absolutely right about jobcentres. I am not in a position to answer your specific questions on jobcentres, but what I do know is that we are improving the training materials for the civil service, and that in so far as the people who work in jobcentres are indeed civil servants, we have better training and information materials available now than were available-in fact, there was nothing-three years ago. The question you are rightly putting to me and to my permanent secretary colleagues is, "To what extent do we know that is being used?" and I think our information on that is not good enough at the moment.

Q6 Mr Bacon: Do you yet know how many adults there are in the country with autism?

Una O'Brien: We have just had the prevalence study. Perhaps you can say something about that.

Shaun Gallagher: One of the commitments in the strategy, which I think was given to the Committee, was that a study would be undertaken on the prevalence of autism across the country. That work was done and published at the beginning of last year. Broadly, it suggests that people with autistic spectrum condition are about 1% of the overall population. That is a reasonably reliable and valid picture at national level. You cannot take it as absolutely reliable at local level, but it gives you a decent guide of the overall number of people we are talking about. But as many of you will know, if you have an involvement in this, that is a very wide range of people. It includes some people who are receiving quite high levels of support already from one or other services, and quite a lot of people who are getting on with their lives, but who could probably benefit from some kind of support and guidance.

Q7 Chair: Are you collecting the data now? The whole report suggests that the National Autistic Society is giving you the data, and you are not doing anything.

Shaun Gallagher: No, this was a national study that we commissioned.

Q8 Chair: I know that that was a national one-off, but you need consistency. Una has just said that data drives performance. This report tells us that you are not collecting the data. What I really want to know is, are you doing it? When are you starting to do it, if you are? Or are you completely dependent on the National Autistic Society?

Shaun Gallagher: With respect, it is not the National Autistic Society that is collecting data on prevalence, numbers of people or cases. That is for local services to work on. I don’t think that we will ever be in a position where we will be trying to list that whole 1% of the population who have autism as a national data collection exercise.

What we have said to local authorities working with NHS and other organisations is that they now need to work from that prevalence estimate and to build their own information about their local community and population, and what the range of needs is likely to be. The range, obviously, is up to 1%. That gives you a good guide for the total that you are working with.

If authorities currently ask themselves, "What is the number of people who we know have autism and who we are working with?" it would be a very much smaller number than that. It will vary in different parts of the country, but it will always be much smaller. What they need to do is to work on how they can identify a wider range of people who may not currently be in contact with services. The other thing that is really critical is to work with those who are providing services to people for learning disability or for mental health, where that is not recorded or it is not understood that the person has autism.

Primarily, the thing there is the way in which the person is supported-

Q9 Mr Bacon: This is a classic problem. This is a problem that was being talked about three years ago. The strategy is now three years old. Can you tell us what impact the strategy has had so far? How many people with autism have been helped by it so far?

Shaun Gallagher: The overall picture that I think we would give is that there has been progress in a number of areas against the strategy. Would we try to pretend that there has been transformation at local level in the services that people receive? No, we would not. The self-assessment exercise that we have already talked about-it was actually carried out in 2011, one year after the publication of the strategy-gives a sense of where authorities felt that they were, which is that they are making some progress, but in a number of areas they still have to go a lot further.

Could I just make one point about data? The Health and Social Care Information Centre, which is the national body responsible for health and care statistics, has undertaken a consultation on different ways of collecting data on people receiving services. Subject to their final response to consultation, we expect that to do a couple of important things that will help in this area. One is that information will be collected not only on the condition that people are receiving support for, but on other conditions that they have alongside it. In truth, an awful lot of people with autism are receiving a service that is for mental health or learning disability.

Amyas Morse: I know that you will be ready to deal with this, I am quite sure. This prevalence study was based on a sample of 290 people in quite a narrow geographical distribution. I hope that you are going to do more than that when you come to do this fuller review. Yes? We expressed our concerns.

Shaun Gallagher: I know you did. The National Audit Office did express views about the reliability of the national prevalence study. It is quite true that it was based on a relatively small number of people.

Q10 Mr Bacon: The average opinion poll requires at least 1,200 people nationally to be statistically significant and reliable. Where were these 290 people, if they were in a narrow geographical area?

Shaun Gallagher: It was in three localities. I cannot at this moment remember.

Amyas Morse: I can help you with that-

Laura Brackwell: Leicestershire, Lambeth and Sheffield.

Q11 Mr Bacon: Were they chosen for a particular reason?

Shaun Gallagher: I am afraid that I cannot give you the detail on that. I am not a statistician. All I can say is that the Health and Social Care Information Centre-

Mr Bacon: It is fewer than 100 people in each place.

Q12 Chair: It is a qualitative study, not a quantitative study.

Amyas Morse: In fairness, what Mr Gallaher was saying was mostly qualitative in nature, so I am not trying to accuse you of misrepresenting it. What I really wanted from raising this point-it is there in the Report-is really to be clear that, when we come around to next year, we need a much fuller study. We are not representing this as being an adequate census of how prevalence occurs. We could not represent it as such, could we?

Una O'Brien: I think there are two things on that. Your challenge is accepted, but, Shaun, I think it is worth hearing about what the Health and Social Care Information Centre is about to do. That will enable us to have data about people who are receiving services, who are currently not yet recognised in the system as also having autism.

Shaun Gallagher: Una is quite right. The prevalence study was never, in a sense, intended to identify every person in the country who has autism; it was intended to give an indication of how many you might expect to find in a given area to provide you with a starting point, so that you can then try to identify the range of needs. What that says-as well as the 1% figure-is that roughly a third of people with learning disability can be expected to have autism as well. That will vary, obviously, in local areas. Again, that is a good starting point for authorities to be asking themselves, "Do we actually know whether, for the people we are currently already serving with learning disability services, we have anything like that number of people identified as having autism?"

Q13 Mr Bacon: Did your prevalence study tell you how many gifted and talented children might be autistic?

Shaun Gallagher: I do not think that it asked that question.

Q14 Mr Bacon: The link between learning difficulty and autism is such a well-worn track. It leads so easily to a conflation with the idea that autism has something to do with intelligence, whereas anyone who has spent four minutes looking at this knows that they are two completely separate things and that many, many people who have autistic spectrum conditions exhibit all kinds of unusual levels of high intelligence. It would have been a fairly obvious question to have asked in the prevalence study, would it not?

Shaun Gallagher: I apologise if I gave the impression that I did not understand that because you are absolutely right. As I said earlier, it is a huge range of people who have an autistic spectrum condition, and it is certainly not only those who have a learning disability or other mental health problem, and it can exhibit itself in people who have, as you say, high levels of capabilities and gifted abilities. The prevalence study, I think, was intended to identify the totality of people across that spectrum, as it is understood.

That means that people at local level must understand that they need to find alternative ways of identifying, supporting and helping that large number of people who are not in contact with the support services. That could be done through work with colleges, schools or other organisations, or indeed through community groups. Recently, I spent some time with an autism advocacy organisation in one part of the country, which simply advertised in libraries, colleges and schools to say, "Do you know someone who may have the following sorts of attributes or who may behave in the following sorts of ways? There is help that can be offered to them, and guidance and information." It is absolutely about reaching out to a much wider community who can benefit from some kind of support. Probably, that help will be provided in the form of advice, information and support as opposed to through a formal, statutory service.

Laura Brackwell: My understanding of the prevalence study was that it took as its sampling starting point people with learning disabilities, so I am not sure that it would have reached across the spectrum. That is my understanding.

Amyas Morse: Because it was based on the available registers of people with learning disabilities, wasn’t it? I think you will find that is the database.

Q15 Mr Bacon: Is that right?

Shaun Gallagher: I am going to run into things that I cannot help the Committee on, I am afraid. I may have to offer that we write-

Chair: That is shocking, if that is true.

Mr Bacon: It is very shocking if it is true, and-

Shaun Gallagher: As I say, I am not an expert in this. I believe that the prevalence study combined that additional study with information that had come from an earlier study across the entire population; they were combined in ways that I do not understand, but were hopefully statistically-

Q16 Mr Bacon: Divided by the number they first thought of, but only with 290 people. It does sound to me as if this is an area that you have got to revisit, frankly. Do you agree with that?

Shaun Gallagher: I absolutely agree that we need to revisit what is the best information on those within the population whom we think could benefit from some support and ensure that there is a good understanding at local level of the range and types of those people. Then, we need to support local action to do the best to identify those people.

Q17 Mr Bacon: I apologise now, because I am going to have to withdraw and hand over to my colleagues, but I would just like to pursue one other matter, which is economic contribution. One of the most shocking facts that came out of the 2009 NAO study was that 85% of people with autistic spectrum conditions are not in employment. That is a huge economic waste. There were examples of ways in which employers who use work trials as an alternative to interviews can get around this. Indeed, it turns out quite often that people with autistic spectrum conditions are incredibly loyal and incredibly-I hate "incredible" in the wrong context, I am sorry-extraordinarily loyal and extraordinarily conscientious and diligent workers, once they are given the chance to work, but they cannot necessarily perform in an interview environment. Given the very significant economic potential and the potential for contributing to the tax base rather than being a drain on it, what is your review going to do to look at the scope for increasing opportunities for people to get into sustained employment? That is a very important strand, is it not?

Shaun Gallagher: Yes. It is, absolutely; it is one of the central parts of the strategy and the review will cover it. The review will undertake a further exercise on local progress-as Una says, learning from and taking a rather more rigorous approach that is more suited to the fact that we are now three years on-at local authority level, but it will be asking for all partners, including local employment organisations, jobcentres, the DWP and so on, to feed into it. I cannot speak fully for colleagues from the DWP, but I think they would say that they recognise there is more that they can do. Schemes like Access to Work and Work Choice are about supporting people who may need additional help and guidance to find work but also, once they are in work, to help them to settle in.

One of the other things that has come out just recently was a research study on supporting transition from childhood through to adulthood. It was a report that the DFE commissioned and was published a couple of weeks ago. It picks out some of the good practice in helping people into that first step into employment out of college, and other support. It identifies that, among those it spoke to, the young people really valued having support to undertake employment even if it were on a voluntary basis, in order just to get into the habit and understanding of what it was like to be in the workplace. If I can just speak from the Department of Health’s point of view, we have participated in schemes to have people with autism and other conditions working in the Department. You are absolutely right, of course. They can undertake a full range of responsibilities.

Q18 Chair: I just want to stress that it is great to do strategies, but what we want is action.

Q19 Austin Mitchell: I don’t have any expert knowledge about the area. My evidence is largely anecdotal, but I gather from the Report that the Health Department’s evidence is largely anecdotal. At figure 5 on page 20, you have anecdotal evidence from Cambridge and Nottingham, but it is not quantified. The problem, therefore, is, why don’t you quantify it and give us tables on performance in this area? Under paragraph 2.8, significant progress depends on the quantification of results. I see from the Report that the incidence of autism is 1 in 100. I assume that it is randomly distributed over the whole country and that autism is not more concentrated in Grimsby than in other parts of the country.

You must be able to form a consistent measure of performance and treatment by local authorities. I know for a fact that the old county of Humberside was atrocious. It did not recognise the condition, even though most of the councillors seemed to have it. That was a joke! North-East Lincolnshire is much better. There has been a huge improvement in my area, but why cannot we quantify that over the whole country and build up a head of steam? Why is all the monitoring work left to the National Autistic Society?

Shaun Gallagher: That takes us right back to what Una was saying earlier, and when the Committee slightly challenged the processes towards getting better data. The point that you pick out in figure 5 is about the number of people who have access to personal budgets and direct payments as part of the way in which they get social care support. The number of people receiving support with personal budgets and direct payments has gone up quite significantly in recent years, and that is part of helping to give people choice and control in how the support works for them. It has actually been more successful in uptake among people of younger ages than among older people.

I expect that there are quite a number of people with autism who have had personal budgets and direct payments. The reason why we cannot say whether that is the case comes back to the question of the data and recording. The point I made earlier is that the statistical collection will now start to look at not just the primary reason why they are having support, but what other conditions they have. That will allow for people with autism to be identified and, therefore, to be able to ask more rigorously, "Are people getting access to personal budgets as much as they should do?"

Q20 Austin Mitchell: But if you had published national statistics, it would be much easier to hold local authorities to account. Public opinion will hold them to account but, without information, that is specious. It is only a minority of people who are concerned. They are passionately concerned, but they are a very small minority. Unless they have statistical evidence to go on, to help to throw bricks at the local authority, nothing will happen.

Shaun Gallagher: I agree. As Una said earlier, those people are armed with information. That is how you help them to challenge whether local services are supporting them as well as they should be. You correctly identify that that is why better information and data collection are the important things that we need to take further.

Q21 Austin Mitchell: Can you identify where the failings are? I have cases come to me from outside Grimsby that argue that the local authority does not want to recognise the condition because it would mean statementing the kid, and that would mean expenditure by the local authority on SEN funding or whatever it is. A specialist has diagnosed the kid as autistic at some expense, but the local authority has refused to accept it. Will there not be a tendency to do that in times of cuts and economies in local council spending? Is that the suspicion?

Shaun Gallagher: I would hope not.

Q22 Austin Mitchell: How can you penalise it?

Shaun Gallagher: One of the points that the original NAO study, with Lincoln and the work on early action that the Committee was talking about, was that identifying early those people who could do with that support and help them appropriately has the potential to save money. If you take a child, for instance, with autism or special educational needs of some other kind, it is beneficial to help them to stay within mainstream schooling with the right kind of support.

Q23 Austin Mitchell: Nobody is arguing with that.

Shaun Gallagher: It is also cheaper to the public purse, if you can help them into employment. I realise people do not always see that case, but that is the incentive that should be driving them.

Q24 Austin Mitchell: I am sorry to be ignorant, and you can correct me on the facts, but when a school takes academy status and a kid is statemented, is it the local authority that still has to pay for the extra teaching?

Shaun Gallagher: I am not able to tell you that.

Austin Mitchell: You are as ignorant as me.

Shaun Gallagher: On that, I am. The support for children in social care will certainly be from the local authority. In terms of additional teaching support within the school, I am not able to tell you.

Chair: It is a really interesting issue.

Austin Mitchell: You’re nodding, Laura.

Laura Brackwell: No, I don’t know anything. I can soon find out.

Q25 Fiona Mactaggart: Can we get a note about this?

Shaun Gallagher: I can promise that, certainly.

Q26 Chair: It is interesting because the money for the academies comes from the DFE.

Una O'Brien: We need Chris here to answer that.

Q27 Fiona Mactaggart: I want to take you back to the point about data. We are not clear enough yet, and it is worrying me. I heard you say-and that was to some degree reassuring-that, instead of just collecting data about whether someone has learning difficulties or whatever, you are going to say when they present if they have autism to you and that you might collect that data. As I recall, in the autism strategy, the Department committed to lead on the development of an agreed protocol for what information should be recorded and how it should be shared with other services. It does not sound to me as though that is what you have said.

Shaun Gallagher: No, and you have spotted it quite correctly. That is not quite the same thing. It is one of the areas that has changed since the publication of the strategy, and there are a few areas.

Q28 Fiona Mactaggart: Why?

Shaun Gallagher: One thing was a change of government, which led to a number of changes in the shape of the health and care system. But, in this case, it is to do with the review that was undertaken of the way in which data are collected in local authority social care, which was undertaken by the Health and Social Care Information Centre. As I said earlier, that is not finalised, but the consultation proposal that they set out last year was that the change that you mentioned would be undertaken, so that we would collect information on the conditions that people have and they can therefore be better identified.

The intention, once that is finalised, is that it will come into place as of April 2014, so those data will then start to be collected in a wholly different way. The difference that that will make is that you will then be able to identify much more effectively all those who may be supported for whatever reason but who also have autism. That is good for the data and overall understanding of numbers, but it is also good for ensuring that those people can have a properly tailored assessment of the way in which they can be supported, because, as Mr Bacon mentioned earlier, people who may have autism can have particular needs and behaviours that mean that the support that health and care professionals give them needs to be adjusted accordingly.

Q29 Fiona Mactaggart: I’m really sorry to be dim, but I am not quite sure what this is going to mean in practice. The reason why I am obsessing about it is that we were very clear-for example, in the long-term conditions strategy-that to assess what progress has been made, you need to understand the baseline. You need to know what life is like today. I can hear that there is an ambition to make progress, but unless we know what happens today, particularly for a condition that is as varied as this one, we do not know whether this is progressing. Are you going to be able to give us a baseline of who has autism at the moment and the services that they get, so that when we do the follow-up review, we will know what has changed?

Shaun Gallagher: The answer to that question is that we will get a better baseline as a result of the review work that is undertaken this year, but that will still be on the basis of the current data collection standards, because, as I said, the new arrangements come into place from April next year. What we will be able to get is the best information that local authorities and NHS organisations can pull together on what they know about the people they are supporting with autism and, indeed, other information that they may have about people in their population with autism, but it will not be as comprehensive, simply because the data collection has not been there in the past. That is one of the things that is changing.

Q30 Meg Hillier: Can I chip in on that point? Like Fiona, I am obsessed with the data. You start this process in April 2014, so when do you think that you will have the baseline? When will it have been running long enough for you to have got the full answers?

Shaun Gallagher: By the end of 2014-15, all data in that year will-

Q31 Chair: 2014 or 2015?

Meg Hillier: The financial year?

Shaun Gallagher: The financial year 2014-15. By the end of that year-I presume I am getting this right-all data collected by authorities in that year will be on the new basis, so by the end of that first year, I suppose, you could say you have a year’s worth of data under that new set of arrangements.

Una O’Brien: For clarity, at the moment, the best we’ve got is what each local authority assesses, and they are assessing from two different sources. One is, to what extent are people with autism utilising statutory services in some way? They can work that out, but what Shaun is describing is the fact that the data collection fields at the moment are inadequate and do not fully capture all the information that we need to capture about those individuals. There is a consultation out at the moment. It is going to come to a close, and the arrangements are going to be put in place during 2013 to systematically improve the data collection in 2014-15. That is a good thing, because it is going to sustainably change things. The thing that is really difficult, which Mr Bacon referred to earlier, is the people who are not accessing statutory services. We do not have methods to go out there and find them. What we have to do is-

Q32 Chair: Actually, schools would.

Una O’Brien: Schools are one very good source, but obviously there are also people who are outside the school system already, so we really have to look, through the study this year, at how we can improve our methods to get a broad idea of what we ought to have in a population. Let’s say I have 600 accessing statutory services and the statisticians tell me that in a population the size of mine, I might reasonably expect to have maybe 1,000 people. You know what the gap is and therefore you can do work locally in the sort of guise that Shaun described earlier, in partnership with third sector organisations and in other ways, to reach out to people, to find the missing folks. This is the problem we have at the moment, so we must redouble our efforts to make sure we know who those people are, and that we get information to them and their families about the sort of help that is available.

Q33 Fiona Mactaggart: If you did part of what is in the strategy-have a protocol on data sharing-and did good-quality training so that, for example, people in the jobcentre noticed when they encountered people with autism who were perhaps not accessing services, that protocol could mean that you had a bunch of data. But at the moment, you are not doing the training and you do not have the protocol. That doesn’t seem right. I love the proposal that people with autism and their families might audit local data. That is great, but unless you have trained people in places such as jobcentres and have a data-sharing protocol which means that they can tell you about those people, you will not get it, so what are you going to do about that gap?

Shaun Gallagher: In respect of training, which we have not touched on so much up to now, the first thing I should say is that the strategy identified that training and awareness is one of the absolutely critical areas for steps to be taken, partly because of the misunderstand among many people, including professionals, about the nature of autism, what it may mean for people’s behaviour and needs, and the support they could benefit from-that is, specific training for people who work with and support people with autism, and broader awareness training for pretty much anyone who may come into contact with them.

Q34 Chair: Sorry to keep interrupting, but a simple thing-we weren’t around at the time and Austin is probably the only one who was-is that it says, "Add in core training curricula for doctors, nurses and other clinicians." That is all in your control. If Richard is right, that could be added into a 10-minute, 20-minute or half-hour module in their training. Why haven’t we done that?

Una O'Brien: As Shaun explained, a lot of work is under way on every one of those-

Q35 Chair: I don’t want to be officious, but is work under way? This is a strategy agreed in-

Meg Hillier: 2010.

Marius Gallaher: 2010.

Chair: It is an easy one; it is an easy win.

Una O'Brien: We don’t control the curriculum for undergraduate medical education.

Q36 Fiona Mactaggart: Have you discussed it with the colleges?

Marius Gallaher: We have discussed it with the colleges, but that is one area where we have not made as much progress as we would have liked.

Q37 Chair: So when are you going to do it by?

Marius Gallaher: We are already discussing it with the royal colleges.

Q38 Chair: When are you going to do it by?

Marius Gallaher: I can’t give you a commitment; I’m afraid I can’t.

Q39 Chair: Why?

Marius Gallaher: Changing undergraduate medical and other professional education is a bigger job than it may sound, and I cannot give an absolutely firm commitment.

Q40 Chair: Mr Gove manages to change the curriculum quite quickly. There is absolutely no reason for not doing so here.

Una O'Brien: I would love to control the medical education curriculum, but we do not. This hearing is coming at a really good time, because it is just before we launch the review. In all these areas, we need more specific, focused action. There are areas where we have made more-

Q41 Chair: Una, this is not a review. You had some perfectly sensible action points-I am looking at figure 3-in your control. I accept that you weren’t around the whole time, but they were in the control of the Department. None of them was achieved. You don’t need a review to tell you that these are sensible things to do.

Marius Gallaher: No, what that particular area needs is further discussion with the royal colleges and with the new organisation, Health Education England, which comes into place from 1 April and will take a national view of the content of professional training. That is something that we will do, but I cannot at this stage commit to the timing.

Q42 Chair: I am going to ask you to give us a note, in time to incorporate it, on these issues at the core training of the curriculum for doctors: work with primary care trusts and local authorities to identify priority groups for training; ensure that autism awareness training is available to everyone working in health or social care; work with partners to develop effective training models; and all local authorities to ensure that staff conducting community care assessment-this is so bloody basic-receive autism awareness training. Those four actions were in the thing and all were not achieved. I want a note from you as to achievement-not just that you are working on them.

Shaun Gallagher: Would you allow me to say something about those now-if you wouldn’t mind?

Fiona Mactaggart: She still wants a note though.

Shaun Gallagher: I am not trying to push that one off.

One thing has changed in the undergraduate curriculum, and in a sense that is then the bedrock for all future professionals. There are obviously all the people who are currently working as well. We have developed quite a number of high-quality training packages, materials and support in co-operation with all the relevant professional bodies. A particular package of learning with the Royal College of General Practitioners targeted at general practitioners is available now. It is something that the RCGP promotes to its members. Another is targeted at nurses, along with the Royal College of Nursing, which they distribute to their members, and is specifically about autism. A range of training materials and support, including videos and online material, is for all social care staff and social workers.

The NICE guidelines, which we have not mentioned so far, were published last year. They set out the standards for diagnosis and management of people. All NICE guidelines include a pretty comprehensive package of training materials to help in their implementation as well. They set out case studies, clinical scenarios and specific support that can be used for people to work, learn and train. All that material enables people to be trained. I accept that it does not itself achieve the outcome that we are trying to achieve, but it is some progress in moving towards things that we said in the strategy that we would do.

Q43 Chair: I think it’s unacceptable. I would not, as Richard did, have got at DWP, because it has actually managed to train everybody. The problem is whether they are using the training properly in their assessment. If Health can’t bloody well do this-your own Department-who can? Producing tools, producing strategies are great but, for goodness’ sake, just get on with making sure that they actually do it. It is just crazy otherwise.

Una O'Brien: We are talking about the difference between 70,000 people and 2.5 million people. We have just to realise the scale of what we are talking about. There is no resiling at the Department of Health in trying to mainstream this. We should go faster and we will, but the truth is that, if we do not have good-quality materials available and do not make use of web-based materials to reach people, we will never be successful.

Chair: I look forward to your note, which I hope will have more specifics in it.

Q44 Fiona Mactaggart: There are things that are absolutely in your control, and how they are in your control has changed, as the way in which we structure health and social care has changed quite radically over the last few years. One of the things that I have been hearing from professionals working in the field is that when they are trying to make progress, because this is not part of the outcomes framework, because this is not rewarded and measured properly in places, people ignore those professionals. A pioneer will be trying to improve things locally, but there is not the structure that rewards, helps and supports them. What are you going to do about that? For example, could you commit to including autism indicators in an outcomes framework? What is your plan, using the new structures, to ensure that, at least in places where people are trying, there is something to help them succeed? I can’t see it.

Shaun Gallagher: I can give you a pretty simple answer to that. Yes, we can commit that that is something that we will try to do.

Q45 Fiona Mactaggart: Try? It’s in your power.

Shaun Gallagher: The first step is, do we have a good enough database to populate those indicators that need to go into the outcomes framework? If we can take that process through, you are quite right that, in order to ensure that you are getting the best transparency about how well people are doing and to get the incentives right, you would need to reflect that in the outcomes framework that is collected and published. At this moment, we don’t have good enough data for indicators to be included in the outcomes framework, so that is part of where we would have to go with it.

Una O'Brien: It is chicken and egg, though.

Chair: Quite.

Una O'Brien: Because we know that you have to make the commitment to do it in order to get the data collected. Where we have got to with the Health and Social Care Information Centre is a bit of a breakthrough because, for the first time ever, there is going to be routine collection of data, so that when people are accessing public services or health and social care services for other reasons, if they have autism, that will be captured and recorded. It is a good challenge.

One of the things that has caused me to feel really good about the fact that we were going to be coming and talking to you about this today was that we could include your questions and challenges as we get going with the review in the next couple of months. So it is really timely, particularly the part that this Committee has played in pushing for this work in the first place. I know that you bring the perspective of what people are saying in locality, and we really need to hear that and not just be caught up in how this looks from the point of view of meeting an overall strategy.

The next stage for us now is to get really good, comprehensive terms of reference for the review. The programme board, which is chaired by Norman Lamb, who, by the way, takes a very close personal interest in this as the Minister for care services, has already had an initial discussion about the review. I would like a combination of what we are hearing back from the NAO and your own Report on this. We want to include that and make sure that the review is as thorough as it can be.

We have an opportunity to reposition the strategy. We have got Health Education England, Public Health England, directors of public health in local authorities and health and well-being boards. It is a new opportunity to put this issue into the professional brain in locality-that this needs to be paid proper attention.

Q46 Fiona Mactaggart: I understand that. In a way, this sounds a bit like a Catch-22. We do not have the data, so we cannot measure progress, and we cannot measure progress, because-do you see what I mean?

Una O'Brien: I do. It is not meant to sound like that, but I understand what you mean.

Q47 Fiona Mactaggart: It seems to me that the review is potentially an opportunity to address some of those issues by, within the review, also doing some smaller-scale studies about what progress looks like and so on. Could you think about not just the terms of reference of the whole review, but whether part of the things about the review might be to make available some resources to do case studies on excellent areas, to try and model some of this. Unless you do that, with the paucity of data, we are going to end up with a review that-

Una O'Brien: It’s going to take too long.

Fiona Mactaggart: Yes.

Shaun Gallagher: I absolutely agree with that. That will be part of what we will do. One thing that would be obvious to do during the review is to collect where people are actually making progress and doing well, and ensure that we collect that together and can share and spread that best practice.

On the point about data, you are absolutely right. In a sense, it is where we find ourselves in a difficulty, because when Ministers, this Committee and parliamentarians quite rightly feel that action needs to be taken, and therefore a strategy is produced, in truth we do not take five years to develop the strategy by doing all the data stuff first. We produce the strategy, and that means we are then challenged for not having a baseline because we did not do the data work in advance. So I agree; I think you need to push at both of them at the same time, and we will use the review of the strategy to advance the areas where we need to see progress.

Q48 Meg Hillier: I want to touch on one of the key issues. How much is this a Department of Health strategy and how much is it a cross-Government strategy? There are employment issues. Capturing data on children is perhaps easier than it was five years ago. More people are aware. When someone is out there in the workplace, or not in the workplace, that is a big issue for DWP. Other Departments might have an interest.

Shaun Gallagher: It is a cross-Government strategy. It is led by the Department of Health. In the nature of these things, you need to have a lead Department; otherwise it is difficult to get co-ordination. The programme board that Una has mentioned is chaired by the Department of Health Minister, but it includes senior officials from those other Departments that you mentioned. They are all involved in that. The strategy, when it was published, was a cross-Government strategy, so there are actions that those other Departments take.

Q49 Meg Hillier: Once the review has happened, will you be producing additional guidance? Or will that be DH guidance or programme broad guidance? How will you make sure that that is actually going to be implemented for some of the poor results on employment, for example? It is not all going to be down to the programme board to do that.

Shaun Gallagher: No. The programme board is a very helpful way of bringing together not only the Government Departments; it is primarily about bringing together people with autism and their carers and representatives, voluntary organisations and local NHS and social care organisations to ensure that there is decent strategic oversight and governance. The actions that other Government Departments would have to take would go through the normal cross-Government processes, where our Minister would lead the process of seeking a commitment from his colleagues in other Departments to take, for instance, further steps on employment support and so on.

Q50 Meg Hillier: I ask these questions because I know the challenge. Every Government try to do cross or joint working-whatever we call it at the time. If we take the DWP, universal credit is dominating the agenda and absolutely swamping the civil service and Ministers. Hardly anything else gets touched on, because everything else feeds into that. In the middle of the whole debate about the implementation of the universal credit is the question of what priority there will be for getting people with autism into employment. That will be a little subsection of the Work programme-possibly, on a good day. I am not picking on this Government; it would be the same for any Government. That is just the reality. What levers does the programme board really have to ensure that some of this is delivered, and whose neck is on the block if it is not?

Shaun Gallagher: What levers? Part of it is transparency. The strategy is public. The work that is going to be undertaken during the review will lead to public information about progress and where we are going. That helps and it allows, as we talked about, those who are passionate about this locally to press for further action. The levers are then within Government in terms of Ministers working with their colleagues in other Departments. You are quite right that another Department may of course have major priorities, but, just thinking of the DWP, it also has the responsibility for the Office for Disability Issues, and the Minister for Disabled People is one of the Ministers within DWP, so it is a core part of their business to try to support disabled people into employment and it is one of the things that they track. It is not the only thing that they do, and autism is recognised as one of the areas within that.

Q51 Meg Hillier: My final point is about how it will be funded. It was interesting that the NAO uncovered these amazing figures: "If local services identified and supported just four per cent of adults with high functioning autism and Asperger syndrome, the outlay would become cost neutral over time. If they did the same for just eight per cent it could save the Government £67 million per year." If you ratchet up those figures, you presumably ratchet up the costings. As I understand it, there is no separate pot of money to kick-start implementation, training and so on, but a bit of money into training might mean better identification and better support, so that someone might not be living on benefits and could be in the workplace, and the savings could be made. It goes back to our previous discussion about where you intervene and the cost-benefit of that. Is the Treasury on board with that sort of discussion? Una is giving me the weary smile of a permanent secretary.

Shaun Gallagher: I would like to think that they are. The Treasury are always on board, aren’t they? In that instance, it lies more neatly within one Department, as it were. The DWP programme is where many of the costs of worklessness will arise from people with autism or other disabilities.

Q52 Meg Hillier: Exactly, so the incentive for other Departments is not perhaps there.

Shaun Gallagher: It is an incentive for them to press for Jobcentre Pluses to give attention to this and for the Work programme to get the right sorts of incentives to understand that there are people who need additional support and so on.

At a local level, local authorities are not bad at recognising that cross-public service interest, so local authorities will often employ people who are specifically supporting people into employment, because they recognise the broader benefits that come to their community from having people in work rather than on benefits. There are certainly some incentives that work at a local level.

Q53 Meg Hillier: One of the things that we will do is follow that pound. The pound not spent can lead somebody to despair. I have heard of cases of grown men suddenly being diagnosed and there is a cost to the mental health teams of a spiralling down of their health. These are all things that are difficult to quantify, but when they hit, they hit very badly. In short, you are saying that there is no pot of money that is going to be set aside especially for implementation of that. Am I putting words in your mouth or am I surprising you?

Shaun Gallagher: There is not a pot of money that is, "Here is about how we implement the objectives set out here." There is a smallish amount of central money for things such as developing the training and support that has been undertaken and, obviously, funding for undertaking the review and so on. Within the Department of Health there is funding to support that sort of work-to oversee it.

Q54 Chair: That is why your outcome frameworks can’t wait for your data, because otherwise you will never get action.

Shaun Gallagher: And you will be aware that the Government do not on the whole give targeted pots of money for specific areas.

Chair: No, but if you demand an outcome, the money follows it. If you have not got money for training it has got to come out of demanding an outcome. Otherwise you will never get it. We will be here in four years’ time.

Q55 Guto Bebb: A quick question. To what extent are you comparing notes and looking at what is going on in some of the devolved Administrations? You mentioned best practice from other parts of England, for example. Are you looking at what is going on in Wales and Scotland specifically? There is the fact that Wales, for example, four years ago launched a strategy that was described by stakeholders as a world-leading autism strategy. It has not performed very well-the statistics from Wales are now actually worse than from England-but are you comparing notes as to what is going on or what went wrong in the Welsh context?

Shaun Gallagher: It is impressive to hear that Wales can be world-leading. I am sure that is very often the case.

Q56 Guto Bebb: That was the description in 2008; it is not the description in 2012, I hasten to add.

Shaun Gallagher: I personally don’t know, but I am quite confident that there will certainly be discussions with devolved Administration colleagues about the work that is undertaken in these areas, not least because many of the organisations that we deal with operate on a UK-wide basis-some of the voluntary and third sector organisations and the professional bodies for doctors and nurses and so on. I think I can confidently say that there are those discussions to learn from each other, but I personally have not been involved in those.

Q57 Chair: Thank you very much. We look forward to your note shortly, because we cannot produce our report until we have your note, so as soon as possible, please. We will return to this because we will have recommendations out of this against which we will monitor you. I want to end by saying that the National Autistic Society is doing a fantastic job in following the issue on the ground and helping parliamentarians ensure that we chase the Executive towards progress.

Una O'Brien: I might also say that we also work with the National Autistic Society and we much appreciate the challenges and support it brings to this work. So, thank you.

Chair: Thanks very much.

Prepared 1st March 2013