Autism and ADHD Assessments

Maria Caulfield Excerpts

Monday 6th February 2023 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

It is a pleasure to serve under your chairmanship, Dame Angela. I take this opportunity to thank my hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) for introducing this important debate, and I thank the wider Petitions Committee. I also echo the words of the shadow Minister, the hon. Member for Tooting (Dr Allin-Khan), in thanking those in the Public Gallery who have listened to the debate.

This debate is the second on this issue; we had one on ADHD specifically in Westminster Hall last week, secured by my right hon. Friend the Member for Tatton (Esther McVey). One of the key points made in that debate was about the lack of data collection on ADHD, and we have heard from many Members this afternoon about the impact of that. Although the data is there, it is not pooled together at a regional or national level, and I gave a commitment in that debate that we would look at a data dashboard so that, for ADHD, we can start to piece together who is waiting, where and for what.

I thank all the Members who have taken part in this debate. The fact that we have heard from more than 15 right hon. and hon. Members from different parts of the country and different political parties shows the sheer scale of the problem. I thank everyone for the tone of the debate and for raising these serious issues so well.

Public awareness of autism and ADHD has grown over the past decade, and that is really welcome. The National Autistic Society estimated that 99.5% of the public is now aware of autism. We have a wide range of people to thank for that, from public figures who are increasingly open in the media about their experience, to advocates such as the petitioners, who have helped to bring this debate to this Chamber, and right hon. and hon. Members, who keep neurodiversity firmly on the parliamentary radar and high up the priority list.

The more conversations we have, the more people are empowered to recognise that they or a loved one could be autistic or have ADHD. While this is positive, the debate has been focused on the challenges people face. As I said last week, I am not going to duck away and pretend that there are not significant problems with diagnosis, assessment and getting help and support for ADHD and autism. My own postbag as a constituency MP in Lewes reflects much of what has been said about not just waiting times for referrals but difficulties getting EHCPs—and about the high refusal rate, which we did not hear a huge amount about this afternoon. It might be my particular area, but we have a high number of tribunals in my part of the country. Around 90% of the cases are successful at tribunal, which tells me that there is a problem with parents having to fight tooth and nail to get plans in place.

We have heard about the impact of not getting the help and support that is needed. Early intervention and support avoids a child, young person or adult going into a crisis where even more intensive support is needed and in which damage is done during vital years of their life. That is particularly the case for young people, who should be in school getting educational support but cannot be because they do not have the help and support they need.

My hon. Friends the Members for Dewsbury (Mark Eastwood) and for Darlington (Peter Gibson) talked about whether there is enough funding. That is an interesting debate. Funding is going in like never before, including over £74 million to the autism strategy. Specifically on autism diagnosis, £2.5 million has gone in in the last year to improve autism diagnostic pathways, but it is about how that money is spent and whether it is making a difference. We are putting in more funding, because the issue is significant.

For too many people, the path to diagnosis is too long. There is a great deal of frustration from patients and professionals alike. NICE has a recommendation that autism assessments should be done within 13 weeks of referral and we know that in many cases that recommendation is not being met. For ADHD there are no recommended waiting times for diagnosis, and we are committed to looking at that specifically. NICE sets out for ADHD who should make a diagnosis and the criteria that should be followed. In the absence of a physical test for diagnosis, it can be challenging, especially when other conditions are at play that may overlap and mask symptoms. However, that does not mean we should accept the current long waiting times as the norm.

As many have said this afternoon, we have over 125,000 people waiting with a referral for suspected autism who have not yet received a diagnosis. Only 8.5% of referrals are within the 13-week wait, which is completely unacceptable. We have heard that there are challenges in Wales, as there are in England, and I am absolutely happy to work with colleagues from all the devolved nations to improve assessment, diagnosis and services across the board. However, there are opportunities coming through and a number of colleagues, including my hon. Friend the Member for Newbury (Laura Farris), mentioned some of the pilot studies.

NHS England has developed a framework that is transforming learning from autism and ADHD pilot schemes into scalable action, which will improve support and care for people across the country. Last year, part of the £13 million autism funding enabled 72 pilot tests for improvements in diagnostic pathways, and these pilots are now helping NHS England to develop a national framework on autism that will improve assessment across the country for people of all ages. I am happy to send colleagues the details of those pilot studies, the initial findings and their potential scope as we roll out them out further.

We now expect integrated care boards, which were set up in July of last year, to lead the charge on how pathways can be best delivered in local areas. The guidance will provide signposting at each stage of the assessment process, helping to map out a clear route for diagnosis. We now expect every integrated care board to have an executive lead for learning disabilities and autism, and there was talk in the debate about having a national lead. Actually, we want leads at every single local integrated care board to be the lead person to whom MPs can go if assessments are not being done on time, to hold local services to account, to compare best practice and to make sure it is happening in every part of the country. We are putting in the investment needed to meet the demand, because further investment will be needed. This year, we have committed an extra £2.5 million to the scheme, which will help roll it out further.

Many Members have talked about CAMHS. Although autism and ADHD are not mental illnesses, we know that people with such conditions are often more at risk of mental illnesses, including anxiety and depression. One of the key things that is making a real difference for young people is the introduction of mental health support teams in schools. The shadow Minister touched on that earlier, and we currently have 287 mental health support teams offering support to about 4,700 schools and colleges around the country. That is making a difference by supporting young people with mental health issues, but it is also about identifying whether they could have an ADHD or autism diagnosis and getting them into the system much more quickly.

[Mr Robin Walker]

I welcome the expansion of those teams and the fact that we have more mental health support in schools, but does the Minister recognise that one of the big challenges, particularly with children waiting a long time for diagnosis, is children who are out of school and who are remote from the system, where parents do not feel that their needs are being met and children can wait a very long time for an EHCP? Does she agree that the system as a whole would benefit enormously from faster diagnosis to address that problem?

[Maria Caulfield]

I absolutely agree with my hon. Friend. The mental health teams will support children in schools so that, we hope, we can get in at an earlier stage and children are not excluded in the future. For too long, appeals from parents for assessments and diagnosis have gone unheard. I talked about my own constituency, where tribunals are very frequent, which means that children escalate, get into crisis and are excluded far more often than they should be. The teams will make a real difference by signposting for the children and getting them assessed much more quickly, and we will continue the investment to roll out support more widely. Last year, we invested £79 million to give around 22,500 more children and young people access to community services, which will make a long-term difference.

The pilot in Bradford was mentioned. We are investing in identification in educational settings and committing £600,000 to expand an autism early identification pilot to at least 100 schools over the next five years. I am keen to ramp that up further and faster if we can. Again, positive early findings from that pilot have seen staff reporting that they are better able to identify and support those children.

A number of Members mentioned the interworking between health and education—I admit that it has not been great up until now. We are working to improve that. I hear from teachers who take up the heavy lifting of supporting children and their parents and they often feel that healthcare does not do its bit in terms of getting assessments done quickly. That is why we are working jointly on the SEND review, for which the Green Paper was published last year. We are hoping to update colleagues imminently on the implementation of that. It will make a strategic difference with getting people assessed, diagnosed and supported as quickly as possible. That review is on top of our national autism strategy, which was published last year. We are working up the guidance that will implement that strategy on the ground to improve access to services that people expect.

I hope that I have outlined some of the work that has been done to manage demand, cut waiting times and deliver meaningful change for both autistic people and those with ADHD. I am the first to admit that we are not where we want to be, and that there is a lot of work to be done. With health and education working together, the SEND review, and our autism strategy, as well as by collecting data so that we know what services are where, setting the standards we expect to be met and working with local integrated care boards, we can ensure we improve the experience for everyone.

I will touch on a final point, raised by the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier), which was that ADHD is under-diagnosed in women and girls. She is absolutely right, and that is because the symptoms and signs are very different in girls as opposed to boys and men. We are looking at that in the women’s health strategy. We see a number of young women taking their own lives because they have not been diagnosed in time and given the support they need. That is a priority area for the Government.

I thank colleagues for a very constructive debate. I hope I am not here again next year, and that we see the improvements we are determined to make. I am encouraged, but I realise that it has to feel different for parents, children, young people and adults who are waiting for an assessment and the care they need to improve their experience of living with autism and ADHD.