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.

Northern Ireland (Executive Formation etc) Act 2019 Section 3(5)

Maria Caulfield Excerpts

Wednesday 16th October 2019 Commons Chamber

[Jess Phillips (Birmingham, Yardley) (Lab)]

I had not intended to speak. I do not know that this necessarily needs to be an argument about the rights and wrongs of abortion, although it seems to have strayed into that.

I start with the point that we are now in a Trumpian time, when we talk about big issues on Twitter rather than in these Chambers. The Secretary of State commented on Twitter that the Government had discussed this issue with Church groups. I ask the Minister what other health matters on the UK mainland and in Northern Ireland we have discussed with Church groups. I wonder whether on, for example, the hormone replacement therapy crisis—there is a lack of HRT—the Government have spoken to St Mary’s Church in Moseley, Birmingham.

[Maria Caulfield (Lewes) (Con)]

Will the hon. Lady give way?

[Jess Phillips]

Not at the moment.

[Maria Caulfield]

rose—

[Jess Phillips]

I don’t have to give way if I don’t want to. I shall give way when I am ready.

I wonder whether the Secretary of State has spoken to any Church groups about medicinal cannabis.

[Maria Caulfield]

Will the hon. Lady give way?

[Jess Phillips]

I will. Let’s go for it.

[Maria Caulfield]

The hon. Lady may not be aware of many of the sensitive issues in Northern Ireland, but Church groups have been talked to particularly around historical institutional abuse. Many young children were abused by Church institutions. It is a particularly sensitive issue, and we are asking the Churches to be involved in the compensation process.

[Jess Phillips]

My father is from Northern Ireland and I have grown up in the shadow of some of the issues of Northern Ireland, given where I come from. I understand the issues incredibly well, and the problems that Northern Ireland has faced over the years, including with the Church and institutional abuse. There is a difference between talking about institutional abuse that the Church was a perpetrator of with Church groups and discussing whether we should file prescriptions for certain things with them. The point I am making is that there is no other health issue in this country that we would first discuss with Church groups, so why is this clinical, health matter being discussed with Church groups rather than clinicians or women’s groups? I ask the Minister to let us know. I am sure that the people who scurry along to the Minister with bits of paper can tell us which women’s groups the Government have spoken to—here we go. I will be fascinated to hear the answer.

--- Later in debate ---

[Gavin Robinson]

There is no concern about honesty. There is no denying the will that this House has shown, nor is there any difficulty in acknowledging the court judgment that came before Belfast last week. [Interruption.] The hon. Member for Walthamstow (Stella Creasy) may shake her head, but she knows very well that the individuals involved in that case are close to me—they are constituents of mine—but the law is the law. However, her refusal to accept that locally elected politicians should have a role in the consideration of regulations that are brought forward is rather obtuse. It is an afront to democracy. If we have devolution, and if we wish it well and want it to succeed, I would rather the House recognised that we should give it the opportunity to do so.

[Maria Caulfield]

This is a case not just of dismissing devolution but of pretending to speak on behalf of the women of Northern Ireland. In the Belfast Telegraph just a few days ago, polling showed that across every age group and gender, people in Northern Ireland were against changes in the rules on abortion. Some 54% of 18 to 24-year-olds and 51% of women are against the changes proposed.

[Gavin Robinson]

That is right. The people of Northern Ireland are concerned by the proposals and by the absence of any regulation over the next five months. We will be devoid in Northern Ireland of any legislative protection. The Minister referred to section 25 of the Criminal Justice (Northern Ireland) Act. I do not believe he was right. I would like him to consider this point. He indicated that it provided a legal protection from termination during this five-month period, but it applies only to a woman whose pregnancy is at such an advanced stage that the child is capable of being born and living. We are talking about towards the end of gestation, arguably 27 or 28 weeks. At that stage, there would be some difficulties, but not a barrier.

People have talked in this Chamber about legislation in England that says that healthcare professionals have to be regulated individually, but that is not the case in Northern Ireland. The piece of paper I am holding here is a legal opinion from a QC who is pre-eminent in the field of healthcare. He is also a former Labour Member of Parliament: David Lock. This legal opinion lays out in stark terms the lack of any legal protection that will be available in Northern Ireland over the next five months. [Interruption.] I see people sitting on the Labour Benches to my right dismissing this, shaking their heads and saying it is not true. Well, it is, and it is not just their former colleague making this point. The Northern Ireland Human Rights Commission has made exactly the same point. It said:

“The likelihood of individuals resorting to potentially unsafe practices remains while prosecutions under the criminal law have been removed and a healthcare process not yet been established.”

In Northern Ireland, we regulate the buildings not the people. I wish to ask the Minister a series of questions. I will understand if he cannot answer them in full this evening, but if he cannot, I think we will need a written response in quick time. Can he indicate which piece of legislation in Northern Ireland over the next five months will preclude terminations where there is not a person qualified to do one? What law stops a non-qualified person, when consent is present, carrying out such a termination? What legislation precludes terminations taking place anywhere or what legislation requires a termination over the next five months to take place in a hospital or clinic? Those are serious questions.

The hon. Member for Lewes (Maria Caulfield) raised the concerns of women in Northern Ireland. They are concerned about the lack of any legislative protection whatsoever as a consequence of the cavalier attitude taken when passing the legislation in the House.

--- Later in debate ---

[Mr Walker]

The hon. Lady is right to say that this is a sensitive matter, and we should all seek to get it right. Let me make clear that we will take the action that is required by the law, and that means that more guidance will be published. We have already published guidance for healthcare professionals—on 7 October—to confirm the new state of the law during the interim period and their responsibilities. The guidance was published on gov.uk and circulated via the royal medical colleges. It also contains information for healthcare professionals in Northern Ireland about the funded abortion services in England that are available to women from Northern Ireland under the existing UK Government scheme. The healthcare professionals will be able to refer women to the service if the requirements of the Act come into force on 22 October.

The hon. Member for Rochdale (Tony Lloyd) asked about information on service provision. It is already available, and more information will be made available as we move forward with the process. The hon. Gentleman also asked an important question about the Secretary of State returning to the House. I can confirm that, as and when any extension of the Northern Ireland (Executive Formation etc) Act was considered or as and when any other powers were sought, the Secretary of State would need to come to the House in order to deal with that.

[Maria Caulfield]

rose—

[Mr Walker]

I will give way, but this is probably the last time that I shall do so.

[Maria Caulfield]

When the issue of historical institutional abuse was raised during debate on the Bill that became the Act, the Secretary of State promised that there would be legislation, and it was mentioned in the Queen’s Speech. Has the Minister any idea of the date when that legislation will be introduced? It will affect thousands of people in Northern Ireland.

[Mr Walker]

My hon. Friend is absolutely right. As we heard from the hon. Member for North Down (Lady Hermon) at the beginning of the debate, the legislation is already proceeding in the House of Lords, but I have undertaken to write giving more details about the timetable, and I am happy to repeat that undertaking.

Concerns have been raised about supposed backstreet abortions. We should be very clear that repealing criminal offences specifically relating to procuring abortion does not repeal other relevant criminal laws that exist to protect individuals. Medical procedures are carefully regulated and have to be carried out, as has been noted, on regulated premises with appropriate quality and care oversight. The guidance we published should help to support that.

The repeal of sections 58 and 59 of the Offences against the Person Act 1861 means that women who take pills without prescription and medical supervision will be able to seek assistance and proper aftercare treatment without fear of prosecution. It will remain an offence under medicines legislation to sell or supply abortion pills online without a prescription. It is also an offence to carry out an abortion where the child is capable of being born alive except where it is necessary to save the woman’s life.

As I said in my opening remarks, we will enhance the travel scheme to enable more women to access services free of charge in England and Wales. The point was made that this is not an ideal situation—it is not a situation that anyone wants to persist—and that is why, in answer to the question asked by the hon. Member for Belfast East, services will be available under the framework after March 2020, as required by the law. That is an issue we intend to address. I would say, however, that we believe that the net effect will be to reduce the number of women who might otherwise seek a termination without adequate and appropriate medical assistance; I think Members across the House will welcome that.

Oral Answers to Questions

Maria Caulfield Excerpts

Wednesday 8th May 2019 Commons Chamber

[The Prime Minister]

The party that recognised the issue with zero-hours contracts was the Conservative party in government. The Labour party did nothing about them; it was the Conservatives that banned exclusive zero-hours contracts.

[Maria Caulfield (Lewes) (Con)]

Q3. School funding is a huge issue on doorsteps in Lewes, because for decades schools in Lewes have had significantly less funding than neighbouring authorities such as Brighton and Hove. Last year, schools in Sussex got a 6% increase in funding, and this year schools such as Priory School in Lewes should be getting a 7.6% increase in their per-pupil funding, but the council is keeping back £64,000 of it. Will the Prime Minister do all she can to ensure that schools get the funding they have been awarded?

[The Prime Minister]

My hon. Friend raises a very important point. We recognised that we have been asking schools to do more and responded with the highest level of school funding on record, and we introduced the new national funding formula to make the distribution fairer, but of course it is still the case that local authorities are responsible for determining individual schools’ budgets from the overall sum they have received. They have a responsibility, and I am sure that hon. Members will look to their local authorities to make sure that where schools should be receiving extra money, the local authorities are passing it on. But I will also ask those at the Department for Education, who will have heard my hon. Friend’s question, to write to her in more detail about it.