Attention Deficit Hyperactivity Disorder

16:00:00

I beg to move, That this House has considered support for people with ADHD. It is a pleasure to serve under your chairship, Ms Jardine, and I thank the Minister for being here for the debate. Allow me to take Members through what ADHD diagnosis and treatment looks like in Oxfordshire. Say a 14 or 15-year-old boy is exhibiting symptoms of ADHD. They find themselves easily distracted at school. Their high energy levels are coming through in all the wrong ways; they talk noisily through class and find it hard to sit still.

I thank my hon. Friend for securing this vital debate. Does he agree that one fantastic way to support young people with ADHD and their teachers is to have universal screening for neurodiverse conditions at primary school and to increase teacher training on such conditions?

My hon. Friend has been a fantastic advocate for people with neurodiverse conditions and I wholeheartedly endorse his suggestion. Imagine a young girl who works hard to mask her symptoms just to get through the day. Her GP refers her to child and adolescent mental health services, but the waiting list is so long that the service is functionally irrelevant. She knows that by the time she gets seen, she will be 18 and so kicked out of CAMHS and into adult mental health services. But since February 2024, Oxford Health’s waiting list for adult assessment has been closed. It is a dead end—there is no service. For all intents and purposes, the NHS does not exist. In Oxfordshire, there were 2,385 on the waiting list in March, while capacity is 26 assessments a month. That means the waiting list is seven and a half years long. It is no wonder the list is closed and has become meaningless. But suppose you are one of the lucky ones with a diagnosis and a treatment plan: guidelines from the National Institute for Health and Care Excellence dictate that there should be an annual review of your condition. Your GP is told to continue to prescribe controlled medication, but then says they will do so only until your next annual review by a specialist. However, specialist reviews are not a commissioned service in Oxfordshire, so once someone hits this limit, their GP stops prescribing and their symptoms immediately worsen. In July 2024, I started working on such a case—one of the first in my inbox. A constituent warned me that she was leaving CAMHS and would have no access to care. After her case was escalated to Oxford Health, it was negotiated with her GP that primary care would continue to prescribe until her next review was due. I had hoped that would buy us enough time to find a solution. In February, I was told by the Buckinghamshire, Oxfordshire and Berkshire West integrated care board that it would decide on reopening waiting lists for young people aged 18 to 25 in March. That would allow reviews for that cohort to take place again.

I thank the hon. Member for securing this debate on a really big issue in Northern Ireland, where the waiting list for assessment is five years for children and eight years for adults. We have the added complication—I do not know whether this is the same in the rest of the UK—that schools will not accept a private diagnosis, so people are stuck. Something needs to be done for those who go down the private route so that their diagnoses are accepted at an earlier stage, rather than their having to go down the NHS route.

The hon. Member makes an excellent point about the impact of going private. Far too many children—and the parents who pay—are forced into the private sector; the least we can do is make sure that that marries up properly with NHS provision. March came and went, and only today I received a response from Dr Nick Broughton, the chief executive of the BOB ICB. He confirmed that the plan is still to fund a service for 18 to 25-year-olds, but he could commit only to a timeline of “Q3 2025”. I hope Members will forgive my scepticism about that coming to fruition. Again and again, dates for care have been pushed back, and they are contingent on everything going to plan. Luckily, my constituent is still getting the treatment she needs through the right to choose, but I understand that ICBs are going to be given the option to restrict that right—what happens then?

My hon. Friend is laying out many of the issues that my constituents face. He talked about his constituent using the right to choose. A number of my constituents have taken that route and got a diagnosis, but they cannot access medication because of the shared care model. That is a problem my constituent Helen raised with me—it is having a massive impact, and her ability to pay is being stretched. Does my hon. Friend agree that the Government would do well to review the shared care model, so that those with an ADHD diagnosis can get the treatment they need?

We absolutely need a review of how shared care works. If someone goes through a diagnosis and needs treatment for ADHD, or any other mental health or neurodivergent condition, the last thing they need is for barriers to be put in the way.

The hon. Member is making an important speech on behalf of his constituent. He mentioned the diagnosis process; I have seen in my casework that constituents in hard-to-reach communities find it difficult to navigate the ADHD process, and some appeal to the wrong groups for advice and information. Ultimately, they end up on the waiting list for even longer, because the people they reached out to were not the right ones. Does the hon. Member agree that Government and local authorities need to work together to provide targeted information to marginalised groups and hard-to-reach communities, so that people do not fall even further behind their privileged peers?

The hon. Lady makes a point about local NHS bodies working together with central Government. Where is the accountability? No one is taking responsibility for patients, and they are suffering as a result. In what world is the NHS running on its founding principles when it comes to ADHD? The alternative to non-existent ADHD services in Oxfordshire and across the country is fully private care. This is a two-tier system baked into how we do health. I am not naive. The healthcare professionals I have spoken to tell me that they are overwhelmed by a sudden large rise in ADHD cases.

Is the hon. Gentleman aware of the recent review conducted by King’s College London that looked at evidence from 40 studies in 17 countries? It found no clear evidence of an increase in the prevalence of ADHD; rather, there was greater awareness and acceptance, which was likely to cause more people to seek help and diagnosis.

The hon. Gentleman is right to point out that increased awareness of a condition naturally leads to an increase in the number of people seeking diagnosis. I believe the same was true of left-handedness when that became less of a taboo. I am told that seeing every person who is on a waiting list could cost as much as £3 billion to £4 billion. We must therefore find a way to target urgent, psychiatrist-led care where it is most needed, and to triage early so that the most severe cases get support, along with those who are already taking powerful medication. To that end, I welcome and commend the Government on the launch of the taskforce in March 2024. From the discussions that I have had, however, I know that the communication with ICBs has not been good enough. The initial data from the taskforce shows that an estimated 2.5 million people in England have ADHD, with more than half a million on waiting lists. To end this farce, we need a system that is adapted to manage the new volume of patients with appropriate levels of care. It does not help to say that there is an overdiagnosis of mental health conditions, as the Health Secretary has said; rather, we need to look at models that will diagnose and treat all patients using the most appropriate tool for their level of need. A good start would be to include ADHD in the 18-week pledge on first appointments. Currently, ADHD treatment is not considered a consultant-led area, even though GPs cannot diagnose. Waiting times should be defined by ICBs, with NICE guidance. The consequences of getting it wrong are clear. ADHD is a leading cause of school exclusions, lower academic achievement and increased drop-out rates, and 25% of the UK prison population has ADHD, with untreated symptoms often driving impulsivity and crime. Untreated ADHD is also strongly linked to substance misuse, family breakdowns and severe mental health issues.

I speak as the mother of man who was not diagnosed with ADHD until he was 31. Fortunately for him, he has a very good employer who has made his life considerably easier than it might otherwise have been. However, I am appalled to have found out recently that great institutions such as the British Army, the RAF, the Royal Navy and the police actively discriminate against people with ADHD and simply will not employ them. Does my hon. Friend agree that that is simply outrageous? Will he join me in calling on the Minister to change that?

I thank my hon. Friend for her powerful intervention and join her in that call. For some constituents I have spoken to, it is simply a case of having access to a service that keeps their condition managed well, just as we provide for diabetes, thyroid conditions, hypertension and other chronic conditions. If we get that right, people with ADHD can get on with their lives, build families and bring in taxes for the Exchequer just like everyone else. Before I finish, let me touch briefly on the severe ADHD medication shortage that so many Members have shown interest in. To my knowledge, the most acute need has now abated, and fortunately most of my constituents are getting the medications they need, but what plans do the Minister and the Government have so that it does not happen again? I look forward to the Minister’s response.

16:11:00

It is a pleasure to serve under your chairmanship, Ms Jardine. I thank the hon. Member for Henley and Thame (Freddie van Mierlo) for securing this important debate on support for people with ADHD, and for sharing the experiences of his constituents in Oxfordshire. I know that the hon. Gentleman and others wrote to the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock) about many of the issues he raised today; I hope he found the Department’s response to that letter useful. I thank other colleagues for their interventions. These issues also affect my own constituents, and I see them in my inbox, so I understand their impact on families and communities. First, we must be honest about the challenges. The Government inherited a broken NHS with too many patients facing long waits to access services, including ADHD assessments and support. Lord Darzi’s report laid bare that the growth in demand for ADHD assessments nationally has been so significant in recent years that it risks completely overwhelming the scarce resources available. The report also shows that, at current rates, it would take on average eight years to clear the backlog of adult ADHD assessments and that for many trusts the backlog would not be cleared for decades. We absolutely recognise the need to better understand the factors behind the rise in demand for services to ensure that we offer the right support. The hon. Member for Henley and Thame asked why his trust has closed its waiting list. In preparing for the debate, I asked officials to give me a clearer understanding of what is happening in the Buckinghamshire, Oxfordshire and Berkshire West ICB, which saw a near 50% increase in referrals year on year between 2019 and 2024. I am pleased that the hon. Gentleman has had contact with the chief executive. The trust felt that it could not cope with that level of demand because it viewed it as an unmanageable risk to patient safety and staff wellbeing. That is why it made the difficult decision to close the waiting list for new adult ADHD assessments in February last year. That was the trust’s decision. As someone who worked in the system over the peak years of austerity—some people may remember them—I completely understand how trusts are often confronted with such decisions. The recent growth in demand seems quite exceptional. Integrated care boards are responsible for commissioning services in line with the health and care needs of the people they serve. It is up to local decision makers to make tough choices, because they know the situation on the ground better than Ministers in Whitehall. I understand that the ICB has established an ADHD programme steering group to stabilise its services, and it is working with local partners, including people with lived experience, to develop a new service model aimed at addressing health inequalities, providing a single-service model across the ICB, with a single provider, and providing support for people who do not benefit from medication. I understand that the trust is working to open a service for 18 to 25-year-olds as an interim measure to help those who transition from children and young people’s services to adult services, which we know is a difficult time in their lives. I am sure that the hon. Gentleman will maintain a close watch on those commitments.

Following on from the intervention by the hon. Member for North Down (Alex Easton), I know that this is a devolved matter, but the issues are exactly the same in Northern Ireland as in GB, with long waiting lists and a lack of access to services. Does the Minister agree that people with ADHD are being discriminated against right across the United Kingdom because of the lack of access to services? Does she also agree that, in the interim, those who go for a private diagnosis should be able to enter into a shared care arrangement so that they can access the medication that assists them to function day to day, live normal lives and be part of our society?

I will come on to shared care agreements. As the hon. Member says, this is a devolved matter, and I am focusing on support for issues facing ADHD services in England and what we are doing to support trusts to get back on top of waiting lists and improve access to services. First, NHS England has commissioned an independent ADHD taskforce, which is working to bring together those with lived experience and experts from the NHS, education, charity and justice sectors. The taskforce is developing a better understanding of the challenges affecting those with ADHD, including timely and equal access to services and support. I can confirm today—I know that this will be of interest to many hon. Members—that the taskforce will publish its interim findings shortly, with a final report expected after the summer recess. The interim report will helpfully focus on recommendations that support a needs-based approach, beyond just the health system, in which people can access support based on their needs, not their diagnosis. The report will also set out recommendations for support to be provided beyond medication, and by healthcare professionals other than specialists. Secondly, NHS England recently published an ADHD data improvement plan to inform future service planning, and on 29 May it published management data on ADHD waiting lists. Thirdly, it has been capturing examples from ICBs that are trialling innovative ways of delivering ADHD services and using that information to support systems to tackle waiting lists and provide support. Fourthly, as part of the Government’s five long-term missions, we have launched the 10-year plan to deliver the three big shifts that our NHS needs to be fit for the future: from hospital to community, from analogue to digital, and from sickness to prevention. All those shifts are relevant to supporting people in all parts of the country with a range of conditions such as ADHD. Fifthly, we are supporting innovation. Earlier this year, at a parliamentary event, many of us will have met innovators who are supported by NHS partners. I heard about the QbTest technology that complements the knowledge and skills of clinicians as part of the ADHD assessment process. I understand that 70% of NHS children’s ADHD services already use that technology, and the evidence suggests that it has a positive impact in making the assessment process swifter and simpler.

Will the Minister comment on the fact that in Oxfordshire there is no commissioned service for the specialist reviews that NICE requires annually as a condition of being on the powerful medication? How can it be that someone can be started on medication but have no route to continue on it because they cannot get their annual review?

I am not aware of the detail of the pathway in the hon. Member’s ICB. I suggest that that is a matter for him to discuss with the ICB, which will have heard his question about how it is delivering those services on the ground. Members raised issues around shared care agreements and the difficulties that people with ADHD are experiencing in accessing medication through such agreements, particularly when they have received a diagnosis through a private provider. It is the responsibility of secondary care specialists such as consultants, rather than GPs, to initiate treatment of ADHD. However, sometimes a shared care agreement, in which the GP takes over monthly prescriptions and routine monitoring once the patient is happy with their medication and dosage, can be put in place. The General Medical Council, which regulates and sets standards for doctors in the UK, has issued guidance to help GPs decide whether to accept shared care responsibilities for any condition. NHS clinicians need to be content that any prescriptions or referrals for treatment for any condition are clinically appropriate. All shared care arrangements are voluntary, so even where arrangements are in place, practices can decline shared care requests on clinical or capacity grounds. If I may, Ms Jardine, I will take the opportunity to update the House on the supply of medicines, which has also been raised by colleagues; I understand that it was raised at business questions recently, too. The Government recognise the difficulties that some people have experienced with accessing ADHD medication due to medicine supplies. We know how worrying and frustrating those shortages are for patients and families. I am pleased to say that we have resolved many of the outstanding issues affecting the supply of lisdexamfetamine, atomoxetine capsules, atomoxetine oral solution and guanfacine prolonged release tablets. However, some specific manufacturers continue to have issues with methylphenidate. We continue to work with manufacturers to resolve remaining issues. In fact, I met the medicine supply team this morning, as I do very regularly, to make sure we are on top of these issues as much as we can be. The team is working hard to make sure that the situation improves. Where issues remain, we are directing suppliers to secure additional stocks, expedite deliveries where possible, and review plans to support continued growth in demand for the short and long term. We have worked with specialist clinicians during this time to provide comprehensive guidance to healthcare professionals where there is a disruption to supply. We keep the Specialist Pharmacy Service website up to date with the latest availability of ADHD medicines. I commend it to people listening to the debate and to hon. Members. It also provides comprehensive guidance on switching to alternative treatments, supporting clinicians to make informed choices with their patients. I can assure colleagues that, as the Minister responsible for medicine supply, I will instruct officials to keep a close eye on this issue, so we do not see any of the progress we have made undone. I plan to hold an event, hopefully in Parliament and possibly in the autumn, to keep updating hon. Members on this issue, because I know it is one that concerns us all. In closing, I want to address the young people who may be watching or tuning into the debate at home. I know it is tough for many neurodivergent kids today. You might be stuck on a waiting list, suffering at school or struggling to find your medicine. We really do care about this. We are trying to get to grips with some of the problems we found when we came into office, and I hope you will start to feel that progress within the next few years.

May I bring the Minister back to the subject of my earlier intervention? Will she, as a matter of urgency, take it up with the Home Secretary and get a decision? We should not discriminate against people with ADHD by preventing them from joining the services, whether it be the police, the Army, the Royal Navy or the RAF. I am so shocked about this I am like a dog with a bone—I cannot let it go.

I will ensure that the hon. Lady gets a reply on that issue. I thank the hon. Member for Henley and Thame for securing this important debate and for giving me the chance to put on the record some of the issues the Government are addressing. The Government know there is much more to be done to get better access to timely diagnosis and support for all our constituents, but I hope the actions I have set out today provide some reassure to the hon. Gentleman and other colleagues. Question put and agreed to.

16:23:00