Autism and ADHD Assessments

Debate between Maria Caulfield and Robin Walker

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)

Debate between Maria Caulfield and Robin Walker

Wednesday 16th October 2019 Commons Chamber

[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.

EU Withdrawal Agreement: Legal Changes

Debate between Maria Caulfield and Robin Walker

Monday 11th March 2019 Commons Chamber

[Mr Walker]

The hon. Lady knows that negotiations often go to the wire, and I think it is absolutely right that the Government should fight for the best possible outcome to those negotiations, especially when we have been instructed to do so by this House. That is what we are doing.

[Maria Caulfield (Lewes) (Con)]

Does the Minister agree that the intransigence of the EU on making legally binding changes to the backstop, whether to the time limit or an exit mechanism that would enable many of us to support the deal, justifies our concern that, if we ever enter the backstop as it stands now, the EU would never let us leave?

[Mr Walker]

My hon. Friend clearly expresses the concerns that have been raised on both sides of the House about the backstop, which is why we are seeking to address those concerns through a legally binding change.

Oral Answers to Questions

Debate between Maria Caulfield and Robin Walker

Thursday 28th February 2019 Commons Chamber

[Maria Caulfield (Lewes) (Con)]

13. What discussions he has had with Cabinet colleagues on reciprocal health arrangements for UK and EU citizens in the event that the UK leaves the EU (a) under the terms of the withdrawal agreement and (b) without a deal.

[The Parliamentary Under-Secretary of State for Exiting the European Union (Mr Robin Walker)]

The Secretary of State and I have regular discussions with Cabinet members on all EU exit-related matters. The withdrawal agreement safeguards the reciprocal healthcare entitlements of UK nationals in the EU and of EU nationals living in the UK. Although we remain committed to leaving the EU with a deal, as a responsible Government we are preparing for all outcomes, including in respect of reciprocal healthcare. The Foreign Secretary and the Secretary of State for Health and Social Care have written to EU partners to seek to protect healthcare arrangements.

--- Later in debate ---

[Maria Caulfield]

Will the Minister confirm that the Healthcare (International Arrangements) Bill will guarantee reciprocal healthcare rights for all citizens? Will it gain Royal Assent before 29 March?

[Mr Walker]

The Healthcare (International Arrangements) Bill has completed its passage through the House of Commons and is awaiting Report in the House of Lords. We are confident that we will have the necessary legislation in place, with Royal Assent, by exit day. The Bill will enable the UK to strike the reciprocal deals that will provide the certainty for which my hon. Friend asks.

End of Life Care

Debate between Maria Caulfield and Robin Walker

Wednesday 2nd March 2016 Commons Chamber

[Maria Caulfield (Lewes) (Con)]

I thank my hon. Friend the Member for Totnes (Dr Wollaston) for her excellent work in leading the Health Committee. I will not repeat points that a number of Members have raised, but there is a consensus that the issue of end-of -life care is growing in prominence and importance. The debate on assisted dying last September drove that discussion, and since then a number of Adjournment debates have focused on why end-of-life care is so important.

We know that 480,000 deaths a year occur in England and according to Macmillan Cancer Support, only 53% of people die in a place of their choice. We know that there are gaps in provision—not just in access and quality, but also according to disease type. As a cancer nurse, I was fortunate to have access to excellent palliative care, not just locally but for patients nationally. However, for those suffering from many other diseases, such as multiple sclerosis, Parkinson’s or Alzheimer’s, there is little or no access to good end-of-life care. As a result, there have been a number of reviews. We heard about the “Choice” review, which identified gaps and gave some solutions for meeting them, and last year the Health Committee delivered its report on how end-of -life care could be improved. The report by the Parliamentary Health Service Ombudsman, “Dying without dignity”, identified the same gaps. We know what the problems are, and now we need to deliver the solutions.

As this is an estimates debate, I will flag up the figures in those reports. We must invest £400 million annually in NHS community services to move end-of-life care out of hospitals—where most people do not want to die—and into the community, and we need roughly £100 million each year for local social services to provide the social care to back that up. That would deliver a saving of £370 million for the NHS and the acute services that are now picking those people up, but from my experience I think the savings will actually be much higher.

In the short time I have been an MP, many constituents have written to me, including an elderly gentleman of 92, who, a couple of weeks before the last Christmas that he would spend with his family, was stuck in hospital—not because of symptom or pain control, but for the lack of a feeding pump. He had a feeding pump in hospital, but because he wanted to go home to die and the community did not have one, he had to stay in hospital. That cost thousands of pounds a day, but more importantly it took precious time away from him and his family, just for the lack of a feeding pump. Such things cost a few pounds—I would have given the money myself if that is what it would have taken.

We know that £500 million would deliver district nurses to provide care, pharmacists, social services, and not just the seven-day-a-week NHS that we are proud we want to achieve, but the 24-hour care that most of those patients need. That would improve care and choice for those patients, and once that initial investment had been made, just £130 million a year would help to sustain it for health and social care. It would be money well spent if we could find it.

I bring good news for the Minister: we do not just need money. I make a plea for him to consider the Access to Palliative Care Bill that is currently finishing its passage through the other place, sponsored by Baroness Finlay. It shows that such an approach has a proven track record of delivering end-of-life care without needing a huge amount of investment, because it forces local CCGs to commission palliative care. That is what we are missing at the moment. Placing such care in the hands of CCGs makes them locally accountable, because what will deliver good palliative care in a London borough is very different from what will work in a rural constituency such as mine. It is important that CCGs take on that responsibility. I know from working in acute cancer care that unless something is commissioned and paid for, it does not happen.

[Mr Robin Walker (Worcester) (Con)]

My hon. Friend is making some excellent points. Does she recognise that there is a particular challenge when commissioners can seem almost to get something for nothing, with local hospices taking on more and more responsibility? It is important that local commissioners—wherever they are in the country—recognise that the services they rely on from hospices need to be paid for. As those services have increased in recent years, commissioners need to think about allocating more of their budget to them, which could then make savings for the other services that they commission.

[Maria Caulfield]

Absolutely. Those commissioning services realise their value. Hospices have taken up a lot of care. We all value our hospices, but that work is not necessarily valued financially. From working in cancer care, I know that my trust was commissioned to deliver day services, chemotherapy and radiotherapy. It was paid on a case-by-case basis. As soon as someone had finished their treatment and needed end-of-life care, however, everyone washed their hands of the responsibility because no one was getting paid for it. That is the reality of the situation. We need commissioning for end-of-life care to happen.

The Access to Palliative Care Bill, which has just gone through the other place, establishes four clear guidelines that would greatly improve end-of-life care without the money needed to back it up. First, on pain and symptom control, we should have an evidence base of what works for each disease and make sure that that is what happens. Secondly, there should be education and training for all staff and not just for those in end-of -life care. There is a huge amount of palliative and symptom control that staff, whatever their speciality—intensive care units, cardiac units, renal units and so on—can provide without needing specialist knowledge. All staff need to know is the point at which they need specialist advice. Simple education and training would enable that to happen and improve greatly the care that patients receive.

Research is the third guideline set out by Baroness Finlay in the Bill. Never underestimate the difference that research can make to end-of-life care. When I was a new nurse in the early ’90s, patients with hypercalcemia were admitted all the time. Hypercalcemia is when there is too much calcium in the bloodstream. Patients are confused and dehydrated, and they spend their last few days and weeks unable to communicate with their relatives. However, with research and the advent of bisphosphonates, it is very, very rare to see a case of hypercalcemia. Research into end-of-life care made that difference. Finally, as my hon. Friend the Member for Totnes pointed out, having the CQC inspect end-of-life care would make a huge difference, not just in the acute setting but across the board.

Other Members want to speak on this important subject, so I will just say that if the £500 million needed to implement the “Choice” review is not available, that should not stop us from improving end-of-life care. Many of the aspects of the Access to Palliative Care Bill would make a huge difference to patients and their families. I urge the Minister to consider them in his closing remarks.