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[Relevant documents: Fifth Report of the Health and Social Care Committee of Session 2021-22, The treatment of autistic people and people with learning disabilities, HC 21, and the Government response, HC 631; Summary of public engagement by the Petitions Committee on assessments for autism and attention deficit hyperactivity disorder, reported to the House on 31 January 2023, HC 73.]
That this House has considered e-petitions 589667 and 597840, relating to assessments for autism and attention deficit hyperactivity disorder.
It is a pleasure to serve under your chairmanship, Ms Fovargue. Let me begin by reading out the prayer of the petitions. Petition 589677 reads:
“The Government should create an emergency fund to deal with the massive waiting lists for autism & ADHD assessments for children AND adults. This would provide resources for local health services to deal with current waiting lists and new patients.”
It received over 21,000 signatures, including 29 from my Carshalton and Wallington constituency. Petition 597840 reads:
“The Government should commission a review of how Attention Deficit and Hyperactivity Disorder (ADHD) assessments are managed by the NHS, including through Shared Care Agreements, and increase funding to reduce waiting times.”
The petition reached over 10,500 signatures, including eight from Carshalton and Wallington. I want to put it on record that although the petitions did not reach the usual 100,000-signature threshold for a debate, the Petitions Committee felt that the issue was important. We have been busy working our way through the 100,000-signature petitions and we have managed to catch up, so we thought that this was an important topic for us to discuss.
I thank the numerous campaigners and organisations that have met me and provided me and hon. and right hon. Members from across the House with briefings in preparation for the debate. They include the petition creators, Jessica and Lisa; TV and radio host and autism activist Melanie Sykes; Christine and Henry from ADHD UK; and Sarah and Tim from the National Autistic Society. I will go into more detail later about their experiences and recommendations. I also thank the Petitions Committee team, which has, as always, worked incredibly hard behind the scenes to make the debate happen and has also conducted an incredible survey to ask the petitioners to share more about their experiences and views of autism and ADHD assessments, which received over 7,000 responses. I will share some of the findings of that survey later.
I am sorry, Ms Fovargue, that I will be unable to stay to make a speech of my own. I thank my hon. Friend and all those he is working with for helping us in Parliament to put neurodiversity on the map, because it is not unusual. It is part of what is usual.
My hon. Friend is absolutely right. I am glad that he used the word neurodiversity because I think that that will be a common theme of many of our speeches, along with an understanding of diversity in autism and ADHD diagnoses, which is very important.
My hon. Friend will know that the Health and Social Care Committee, which I chair, is undertaking a major inquiry into the prevention of ill health. Given the rather shocking statistics about the harm that adults with ADHD can come to—attempting suicide, for example—does he agree that answering the petition positively is a key prevention issue in healthcare?
The Chair of the Health and Social Care Committee is absolutely right and I commend the work that the Committee has done in this area. I look forward to reading its report. Later in my speech, I will cover the wider health effects that waiting times can have on parents and adults waiting for assessments, so I am grateful to him for making us aware of that.
When I first agreed to open the debate, I initially took a personal view from my constituency. I have stood in this Chamber many times to talk about the poor experiences of parents in Carshalton and Wallington in attempting to secure education, health and care plans, or EHCPs, for their children due to the poor management of Sutton Council’s arm’s length organisation, Cognus, which was recently the subject of a BBC “Panorama” exposé. Barely a week goes by without a parent coming to talk to me at my surgeries about the poor experiences they have had when waiting for assessments or the inadequate assessments they have had—and this is the case not just for children, but for adults as well. Over recent weeks, in preparing for the debate, it became to me that assessment times are simply not fit for purpose.
I thank the West Yorkshire ADHD Support Group, a brilliant local organisation in my constituency that helps families through the diagnosis pathway. As the hon. Gentleman said, parents are finding waiting times for a diagnosis painfully long—it can be 18 months, two years and longer. Does he agree that that means many wasted years of education, leaving children in danger of falling behind their peers? We are setting them up to fail. Surely we need to think about diagnosis within weeks, not years.
I absolutely agree with the hon. Lady. Many people have said that to me, and I am sure that many other right hon. and hon. Members will say the same. This is a complete waste of opportunity and talent. Indeed, when I met with the TV host Melanie Sykes, that was one of the central things she said to me. This is a wasted opportunity and wasted talent, and we are wasting the lives of young people with these waiting lists.
My hon. Friend is making an absolutely excellent speech. The delay in diagnosis for autism and other neurodiverse conditions is having an impact on young people and families but, more than that, it is having an impact on UK plc. We are denying our businesses and public services the talent of neurodiverse individuals, which is of course having an effect on UK plc. Does my hon. Friend agree?
I absolutely agree with my hon. Friend. There are some shocking statistics about the sheer lack of neurodiverse people in the UK workforce. That is nothing to do with people receiving a diagnosis; it has everything to do with the fact that we are wasting that opportunity.
On that point, I welcome the fact that the special educational needs and disability review is imminent, as we heard from the Minister last week. Let us wait and see what it says. Of course, this is about autism and ADHD. Waiting times are causing havoc everywhere, but people cannot necessarily get medication or treatment for a particular condition until it has been diagnosed. Does my hon. Friend agree that we need early diagnosis as quickly as possible so that parents and others can be assisted with the provision of the appropriate medication?
I am grateful to my hon. Friend for his intervention, and he is absolutely right. The delay in diagnosis also means a delay in treatment. We have debated this topic many times; just last week in this Chamber, my right hon. Friend the Member for Tatton (Esther McVey) led a powerful debate on waiting times. I thank colleagues who have shared their stories individually.
I want first to touch on ADHD as a neurodiverse condition, which is believed to impact over 3 million people in the UK. However, there is substantial evidence that it is vastly underdiagnosed.
I was fortunate enough to chair the debate led by my right hon. Friend the Member for Tatton (Esther McVey). Does my hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) agree that this is not just about delays and a lack of proper diagnosis? There is a real and crucial problem, which came out in last week’s debate, about women and girls being less likely to be diagnosed than their male peers.
I am grateful to my right hon. Friend for her intervention; she has nicked a later part of my speech. I commend her for the amazing work she does chairing the Women and Equalities Committee, which has done amazing work looking at the impact on women and girls in the equalities space. She is absolutely right, of course.
There is a lack of understanding about what ADHD actually is, how it affects people and how it can be treated. The best example is the common stereotype that those with ADHD are all hyperactive. That is a common misconception; only about 15% of patients diagnosed with ADHD have hyperactive tendencies. GPs and teachers hold the responsibility, in essence, for being gatekeepers to assessments, but there are significant issues with training and awareness, which I will go into in more detail. The single biggest issue I have had feedback on from those who have briefed me is the complete lack of data on ADHD care.
When I met with ADHD UK last week, I asked about national data on assessment waiting times and the number of individuals diagnosed. The answer I got was, quite simply, “We don’t know,”—or, at least, the NHS and the Government do not know. ADHD UK has done an extraordinary job conducting its own extensive research and, as an independent charity, it can provide partial answers based on information it has gathered through freedom of information requests to integrated care boards. The Government, however, do not collect national data, and it is therefore hard to have true oversight of the state of waiting times for ADHD assessments in the UK. I know the Minister is very much aware of the problem, so I hope she will provide more information on the steps the Government are taking to gather and assess data on ADHD.
Based on the data available to us and the anecdotal evidence shared with us by those who have gone through the system, we know that ADHD waiting times are indeed in a poor state. The average adult assessment waiting times are believed to be around six months in Scotland, a year in England, nearly two years in Wales and four years in Northern Ireland.
My hon. Friend mentioned assessment waiting times. Does he not agree that that problem is compounded by the time it can take to get EHCPs from local councils, which can lead to further waiting times on top of that?
My hon. Friend is absolutely right. I am sure that just about every Member present has received in their postbag requests for help from people who face delays in accessing EHCPs. That demonstrates the failure in the system, because when parents go through the complaints process, go to the ombudsman or go to a tribunal, the data is clear: between 90% and 100% of cases are found in the parents’ favour. It is clearly a systematic failure.
Some 34% of respondents to the Petitions Committee survey agreed with the data I have just read out, stating that they had waited between one and three years for an assessment. The average child waiting times are believed to be approximately seven months in England and Scotland and 1.6 years in Wales, while there is absolutely no data for Northern Ireland.
I want to mention my hon. Friend the Member for Rutland and Melton (Alicia Kearns), who could not be present as she is chairing the Foreign Affairs Committee at the moment. She informed me that the waiting time for a referral to a community paediatrician in her constituency is approximately two years. I am sure many other hon. and right hon. Members will have similar experiences. This echoes responses to the Petitions Committee survey from the parents and guardians of children with an ADHD diagnosis. Some 17% said that their child had to wait between six months and a year for an assessment, 28% had to wait between one and two years, 21% had waited between two and three years, while 7% said that their child had waited for more than five years.
Those examples involve people with suspected ADHD who are referred, but many more slip through and are completely missed by GPs and teachers or are rejected from being referred prior to assessment—I believe that applies to in the region of 46% of all cases. As the Chair of the Women and Equalities Committee, my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), quite rightly says, young women and girls in particular are likely to be underdiagnosed, with a male-to-female ratio of 3:1. Again, that highlights the need for better training and understanding of neurodiverse conditions. The misconception that ADHD is exclusive to hyperactive young boys is rife, and is another contributing factor to the failure to assess ADHD properly and in time.
The statistics regarding diagnosis are concerning, but the real-life implications of inadequate and late ADHD diagnoses are really quite harrowing. Last week, I had the pleasure of meeting Lisa, one of the creators of the petition calling on the Government to tackle ADHD waiting lists. Lisa’s son was one of the many people to visit their GP in the hopes of receiving a swift diagnosis and support. Instead, however, the GP’s referral was delayed, because the documentation was not submitted by the surgery following a consultation. The family were then informed that getting an assessment could take up to three years. Sadly, last year Lisa’s son took his own life. I thank Lisa for the courage she has shown in sharing her story with me and allowing it to be told in the Chamber today. I am sure we all agree that it is a story she should not have had to tell.
Although ADHD is not a mental health condition, it does have close links to mental health conditions. Indeed, as my hon. Friend the Member for Winchester (Steve Brine) pointed out earlier, those who do not receive support are more vulnerable to trauma, which can trigger depression. In fact, adults with ADHD are five times more likely to take their own lives than those without it.
The repercussions of inadequate and delayed support for those with ADHD are deadly. When we consider the lack of available data on ADHD diagnosis and waiting times, we can only guess at the true extent of the effect on society. For those who do receive a diagnosis, support is often inadequate because of the lack of training and understanding of ADHD in hospitals, schools and wider society. I hope that the Minister can update us on what plans the Government have to improve waiting times for ADHD assessments and support for those living with it.
Although the state of play for autism diagnosis is a lot clearer, the outlook is no less bleak. Thankfully, data for autism exists on a national level. There are over 700,000 autistic adults and children in the UK, and the latest NHS data suggests that over 120,000 people are waiting for an autism assessment in England alone. Despite guidelines from the National Institute for Health and Care Excellence stating that no one should have to wait longer than three months between referral and first being seen, more than 100,000 people have waited longer than that. The Petitions Committee survey echoed that, finding that 43% of adults and 47% of children have been waiting for between one and three years for an NHS autism assessment. As with ADHD, long delays risk people’s needs escalating and autistic people falling into crisis unnecessarily. That ultimately ends up putting more pressure and costs on other services, including mental health services.
I had the pleasure of meeting Jess, the co-creator of the petition calling for action to reduce ADHD and autism assessment waiting times. She shared her family’s experience of trying to get diagnoses for her children and her partner for ADHD and autism. Her frustrating story demonstrated an all-too-familiar experience of someone waiting multiple years for an assessment, waiting multiple years for an EHCP and waiting multiple years to receive support for her child’s deteriorating mental health.
My postbag has been full of people writing in with examples of how their child has suffered from a late diagnosis of autism. Does my hon. Friend accept that the younger the child is, the greater the problem for the parents and the greater the loss for the child?
My hon. Friend is absolutely right. Of course, that all comes back to the very important point that early intervention and diagnosis are key, because then there is the potential to prevent problems from escalating to crisis point.
One of the respondents to the Petitions Committee survey echoed Jess’s story, saying:
“My daughter has been waiting almost 4.5 years for an NHS ASD assessment. In this time, she has spent 1.5 years out of school, 6 months being unable to leave the house, had no social life, had severe anxiety, is depressed and had suicidal feelings.”
Jess also shared with me her experience of the referral consultation and the assessment itself. She described the process as “antagonistic” and said it was
“almost like the parents are on trial”.
Many parents, like Lisa and Jess, have also described the questions asked during the assessment process as a box-ticking exercise that played heavily on stereotypes about autism and ADHD. An example I was given by another witness I spoke to included a question asking the patient if they liked to put things in order.
As with ADHD, autism can be misdiagnosed or overlooked. Often autism exists alongside other conditions.
My hon. Friend makes a good point about the conditions being overlooked and about the attitude of the services dealing with them. Does he agree that there needs to be better training for people involved in those professional services, including in child and adolescent mental health services and in the councils, for EHCPs?
My hon. Friend makes an excellent point. He is absolutely right: more and better training is definitely needed.
When diagnosing autism, there is often a big focus on the anxious behaviours that some people display. When a person does not display those behaviours—that template example of what an autistic person looks like—they are unlikely to get a diagnosis. I again thank the petition creators for sharing their courageous stories with me, and all those who responded to the Petitions Committee survey.
In the national autism strategy, published last year, the Government promised:
“By the end of the strategy”—
“we will have made demonstrable progress on reducing diagnosis waiting times and improving diagnostic pathways for children, young people and adults”.
I would appreciate it if the Minister could update the House on the strategy and, in particular, on the steps the Government are taking to bring down waiting times and improve training for assessments.
Many Members want to speak, so I will bring my remarks to a close. There is clearly a systematic failure at the heart of ADHD and autism diagnoses. Millions of neurodiverse people are left undiagnosed and wait years to be assessed. Training on and awareness of ADHD and autism are lacking, resulting in misdiagnoses and inadequate support post diagnosis. For some, support is almost non-existent. I commend the brave families who are being failed by the system but have taken the time to speak out and speak to us about the issue. I look forward to hearing the contributions from other right hon. and hon. Members, and I very much look forward to the Minister’s response on some of the good news we can look forward to on improving diagnosis and support.
It is a pleasure to serve under your chairmanship, Ms Fovargue. I thank the Petitions Committee for granting this important debate and all those who signed the petition to make it possible.
As the chair of the all-party parliamentary group on attention deficit hyperactive disorder, I am proud to speak in today’s debate on behalf of all those with ADHD and autism. I want to raise the enormous challenges and barriers they face daily and the importance of improving resources, training and access to diagnosis and treatment.
On 13 September 2017, in a debate I secured in this very Chamber, I spoke about waiting times, and diagnosis and treatment following a diagnosis of autism or ADHD. It is very disappointing that, six years on, ADHD and autism remain significantly underdiagnosed and undertreated in the UK, at great cost to individuals, public services and the workforce. I will focus my comments on ADHD.
ADHD is a neurodevelopmental disorder that results in a group of behavioural symptoms, including difficulty concentrating, inattentiveness, hyperactivity, impulsivity and difficulty sleeping. The symptoms affect people’s everyday lives—their development, education, work, relationships and family life. According to the ADHD Foundation, one in 20 people in the UK has ADHD. Although the disorder is associated with children and young people, up to two thirds of cases persist in adulthood. There is a growing understanding of the challenges that ADHD causes for adults.
Although awareness has increased and a lot more people—especially women—are openly talking about ADHD and seeking a diagnosis, there remain severe delays and barriers to diagnosis and treatment for ADHD in the UK today. That is leaving people in limbo and in need of support, and means that enormous untapped potential is restricted and hidden away.
Others have rightly mentioned that an early diagnosis of ADHD has a transformative impact on individuals. For someone with ADHD, a diagnosis can help them to understand their symptoms and gain control over behaviours such as inattention and impulsivity, allowing them to fulfil their potential. Diagnosis is absolutely crucial in enabling people to access treatment and get the support they need.
Although one in 20 adults is believed to have the condition, only 120,000 have had a formal diagnosis. There are many reasons for that. One is stigma, which manifests itself in many different ways, not least in societal attitudes to ADHD and the misconception that it affects only boys and young men. Others dismiss ADHD as an undeserving drain on health resources.
My hon. Friend makes the valuable point that sadly we still have a lot of work to do to reduce the stigma associated with ADHD and autism. Does he agree that we need an education system and, indeed, a society that celebrate neurodiversity and all the wonderful things it brings with it?
My hon. Friend makes an excellent point. We need education in society, and the acceptance of people with ADHD and autism, to ensure that people with those neurodiverse conditions are able to flourish and live to their full potential.
That is twice that the hon. Member for Batley and Spen (Kim Leadbeater) has intervened and I have agreed with what she said. As Chair of the Select Committee on Education, I am passionate about ensuring that we have the provision to address children’s needs. One challenge with the current delays in diagnosis is that although local authorities have the statutory duty to measure where provision is needed and to provide places accordingly, if children are not getting the diagnoses, they do not have the statistics. One thing that we can perhaps do with this debate is encourage faster diagnosis so that we can help to meet that need and ensure that, where specialist support is needed, it is provided .
The hon. Member is absolutely right: faster diagnosis is needed to ensure that the resources go to those who need the support the most. I very much look forward to the publication of the special educational needs and disabilities paper, because it might be a game changer if it delivers.
The inadequate services available for ADHD are another key barrier. As more people seek referrals for ADHD, there just is not the service capacity to match the demand. This is also an issue with staffing levels with regard both to people who can assess ADHD and to the support that is given after an assessment has been made, because there is a need to recruit people with those skills.
People are waiting years for an ADHD diagnosis, as access to services and treatment in the UK is limited and inconsistent. Indeed, according to survey data published in the ADHD Foundation’s “Born to Be ADHD” report, more than a third of adults and children diagnosed with ADHD had to visit their GP at least three times before being referred to a specialist, with 28% waiting two or more years before receiving a diagnosis. In advance of today’s debate, the Petitions Committee carried out a survey and found that most people who responded to the petition had had to wait more than a year for an assessment of ADHD or autism.
The impact of the delays cannot be overstated. The long-term effects of untreated ADHD are documented and include increased rates of other health problems, poor social functioning and antisocial behaviour. For example, those with ADHD are twice as likely not to take up full-time employment. It is also estimated that 24% of the prison population has ADHD, so intervention and diagnosis of ADHD would clearly improve the life chances of people with ADHD who fall into the criminal justice system.
Another problem is the inconsistency—what has been described as a postcode lottery—in support for people with ADHD. Where someone lives is critical in determining how long they are likely to wait to be referred.
The hon. Member mentions a postcode lottery, dependent on where people live. Is it the case that that applies in the school system as well, and that some schools within a postcode even are better than others when it comes to looking after special educational needs?
The hon. Member is absolutely right: getting the resources after a diagnosis has been made is affected by which school the child is at and what resources it has available to provide the support needed.
As I was saying, where someone lives is critical in determining how long they are likely to wait to be referred for an assessment or diagnosis of ADHD, especially given increasing demand. As we know, there is no NHS waiting time standard for ADHD assessment, which means that waiting times are not measured and reported. Last week the Minister, in response to a Westminster Hall debate, pledged to look into national data collection for ADHD assessment waiting times. That would be a positive step forward and I urge the Government to take it. Will the Minister confirm today that she will ensure that that data is publicly available so that we can start accurately to measure waiting times and standards, and end the postcode lottery that exists in ADHD support?
May I ask the hon. Member, who is clearly something of an expert in this area, how reliable he thinks the diagnoses are when people eventually get their appointments? Two of the three cases brought to my attention feature quite strongly a resistance to making the diagnosis of ADHD, even though in these cases—one involving a child and the other a young adult female—they were absolutely convinced that this was the answer. All sorts of reasons are found, including a lot of misinformation, for not making what we think is the correct diagnosis.
The right hon. Gentleman makes an excellent point about the inconsistency in diagnosis. The unwillingness to give a diagnosis impacts on people’s ability to get on with their lives, which also needs to be addressed. On that point, will the Minister see what can be done to ensure consistency across the board on diagnoses?
I end by paying tribute to the incredible work of those involved in ADHD support: the charities, including the ADHD Foundation and my local National Autistic Society group; clinicians in the NHS; and members of the public who are pushing for change in how we think about and support people with ADHD so that those with the condition can thrive. As chair of the APPG, I know that the work of the ADHD Foundation and others is incredibly valuable. I hope that today’s debate, with the many excellent contributions that will follow from Members from all parties, will show the breadth of support in this place for ending the delays and barriers in ADHD diagnosis and treatment. It is time for the Government to act so that we can break down the barriers to success that thousands across the country continue to face in their everyday lives.
It is a pleasure to serve under your chairmanship, Ms Fovargue. I thank my hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) for his excellent leadership of the debate. I also thank the 38 people of Darlington who signed the petitions. In addition to those signatories, I have had correspondence from more than 40 constituents who have faced issues with assessments for autism and ADHD.
Since being elected to Parliament in 2019, I have engaged with many families in Darlington who have children with autism or are awaiting a diagnosis. We must do more to improve the speed of the assessments and improve our guidance to parents on the support and help available when a diagnosis is given. From the many conversations that I have had on this issue, I know that families feel alone and are often unaware of the full range of support that is available to them, either pre or post diagnosis. More than 300 people in Darlington under the age of 18 are awaiting an assessment. Some 40% of them have been waiting for less than a year, 40% have been waiting for up to two years and 20% have been waiting for almost three years. That is just not good enough. In the absence of a diagnosis, these families’ lives are on hold and these children’s lives are not progressing as they should.
On average, there are 40 referrals per month in Darlington, but as each month ticks by the number assessed is always less. The backlog of cases awaiting assessment will never go down, and that is simply unacceptable. I am aware that the petitions we are debating call for more funding—indeed, the answer in this place to every problem seems to be more funding—but this issue is about more than money alone. There are insufficient numbers in training, and recruitment to these challenging roles is not sufficient. Questions have to be asked of local service providers. What more could they do? For example, could weekend working or evening assessments help to clear the unacceptable backlogs?
Last Friday, I was pleased to visit Daisy Chain to learn about the services that it provides across the Tees Valley, and I place on record my thanks to Daisy Chain for all it does to help families in Darlington.
I regularly engage with Tees, Esk and Wear Valleys NHS Foundation Trust on this issue. As the Minister is aware, we cannot underestimate the challenges and circumstances that TEWV service users and their families face. I have raised concerns about the need to improve TEWV’s services on many occasions, in particular in the light of a recent unannounced inspection by the Care Quality Commission. Following the inspection, some services at TEWV’s mental health trust improved, but the trust’s overall rating remains “requires improvement”. The Minister is aware of the problems faced by my constituents, and I thank her for her extensive engagement with me on that issue. I hope she Minister will confirm that the Government will keep a laser-like focus on TEWV and do everything in their power to ensure that the trust continues to improve, as it is so desperately needed.
I warmly welcome the recently published review of special educational needs and disabilities. With the majority of children with SEND attending mainstream schools, it is right that the review proposes to improve the mainstream provision for children with SEND, including through an overhaul of the training for special educational needs co-ordinators. I also welcome the fact that more specialist places for children needing non-mainstream support will be made available, alongside an improvement programme for alternative-provision schools.
Last year, I tabled a number of written questions regarding the number of teachers and teaching assistants in each constituency who have undergone autism-related training and was disappointed to learn that the Government do not collate or collect any data on this issue. I ask the Minister to recognise the benefit of collecting that kind of data, which would show us where the educational system requires further work in providing support for children with autism, and I encourage holding data on teachers who have received specialist ADHD training, for the same reason.
The CQC’s report on TEWV, “Out of Sight”, acknowledges the shortcomings of some of our mental health facilities, the challenges they face with patients—particularly those who suffer with autism—and the sense that places designed for care are not therapeutic. I firmly believe that it is vital to embed a culture of learning, safety and improvement across the mental health care sector. I welcomed the recommendations from the report, which would address some of the shortcomings, and ask the Minister to update us on what action the Government took following the report.
When it comes to people with complex needs, I believe that a conversation is required with our local authorities, which are paying massive sums of money each and every month to out-of-area providers. In my view, some imaginative and collective commissioning could put an end to seemingly ever-increasing costs, much of which are taken up by astronomical transport costs.
We can go so much further for children with complex needs to ensure that there is proper support in place to allow them to flourish, but it starts with prompt diagnosis. I trust that the Minister has listened closely to all the contributions today and that she will do everything in her power to end the excessive waits and give these kids a chance.
It is nice to see you in the Chair today, Ms Fovargue. I thank the hon. Member for Carshalton and Wallington (Elliot Colburn) for leading this vital debate, and my constituents in Coatbridge, Chryston and Bellshill who have signed both of the petitions.
In 2018, NICE updated its guidance for the diagnosis and management of ADHD, yet the provision of services for adults with the condition is not well understood across all the nations of the United Kingdom. The long-term consequences of failing to treat ADHD effectively are well known and well documented. Up to 65% of adults with ADHD who were undiagnosed in childhood tend to suffer from myriad mental health conditions such as mood and anxiety disorders, leading to clinical depression and even suicidal thoughts, as we have heard. A combination of poor understanding and delays in diagnosis means that 120,000 adults across the United Kingdom are currently waiting to be assessed. By improving the identification, care and management of ADHD in adults, we could reduce the number of adults reaching a point of crisis and developing the significant and myriad mental health conditions I have mentioned.
The Scottish Government fully understand the situation I have outlined and have committed to deliver a learning disability, autism and neurodiversity Bill, which is coming through the Scottish Parliament. As with every single piece of proposed legislation, working with those affected and those with lived experience will be at the heart of all that we do. The Scottish Government are currently actively recruiting neurodivergent people to take part in a panel that will help to design an inclusive consultation for the proposed new Bill. That is how real, effective policy should be made: through engaging with those persons who are most affected in their day-to-day lives. Of course, the final situation is problematic, but the Scottish Government have allocated £46 million to improve the delivery of mental health and psychological services, including CAMHS, psychological therapies, treatment for eating disorders, and neurodevelopmental services. A report by the National Autistic Society Scotland and Scottish Autism found that 96% of people surveyed support the introduction of the Bill both to promote and to protect the rights of autistic people.
In order to promote instrumental change, the UK Government must invest in early diagnosis and mental health support, and follow the lead of the Scottish Government with the introduction of a new Bill. Collectively, across the four nations of the United Kingdom, we must all do better in advocating for early diagnosis and ensuring that waiting times are lowered to encourage access to diagnosis and support. We must ensure that those who are disabled have their rights adhered to and fully respected.
In the proposed Scottish Government Bill, the SNP will pledge to create a learning disability, autism and neurodiversity commissioner, yet the UK Government have no plans for an equivalent position here in England. I ask the Minister: why not? Under the UK Government system, the position of Minister for Disabled People, Health and Work is a mid-level ministerial post in the Department for Work and Pensions, which has responsibility for every realm of legislation affecting disabled people. I do not think that is good enough.
There are potential merits to having a separate commissioner, independent of any Government, who may improve the lives of disabled people and better scrutinise the Government, leading them to act on health, education, criminal justice and other areas of society for neurodivergent people. There are similar roles in other countries, such as the health and disability commissioner in New Zealand and the mayoral office for people with disabilities in New York. I urge the UK Government to take urgent action and give those with neurodevelopmental disorders the attention and legislative commitments that they truly and rightly deserve.
It is a pleasure to serve under your chairmanship, Ms Fovargue. I thank the Petitions Committee for scheduling the debate on these two petitions and I congratulate everyone who signed them.
I take a close interest in diagnosis and support for autistic people, because early assessment and diagnosis can make a huge difference to people’s lives. As we have heard, we do not identify autism quickly enough at any stage in life, despite the increased awareness of and focus on autism in recent decades. In my work as an MP, I have seen what a difference diagnosis and support can make to the lives of autistic people, unlocking their potential and further improving our understanding and treatment of the condition.
I remember clearly one woman who came to my surgery very concerned about how her daughter was getting on at secondary school. I tentatively asked her whether she had thought about a diagnosis of autism, and she said she had not. A couple of years later, I got an email from her thanking me for changing their lives. The daughter received a diagnosis of autism and is now getting the help she needs. Apparently she is a completely different person now.
Undiagnosed autism has a huge impact on education. I was chair of governors at Milton Park Primary School in Portsmouth, which has autism provision in its dedicated inclusion centre. Crucially, the centre works with children undergoing assessment, as well as those who have been given an education, health and care plan. Autistic children often struggle in mainstream education settings and specialised support is important. We must ensure that this area is properly resourced.
Autistic people face stigma and a lack of understanding in education, work and society. It can affect their socialisation and how they handle transitions from familiar surroundings to unfamiliar ones. Mental health conditions are an increased risk for autistic people. Even now, there are still cases of autism being mistaken for a learning disability, which is a concern because of the different kinds of support the two conditions need. While it is possible for someone to be autistic and have a learning disability, the two are distinct conditions.
I know from my own casework and research that the process of getting an EHCP for any condition can be long and difficult, even in areas such as that covered by Hampshire County Council, which has an outstanding child services team. Diagnosis and support for autistic people later in life is even more fraught with difficulty. Often people are diagnosed having faced barriers to employment or career development, but eventual diagnosis still makes a huge difference to the rest of their lives and can allow them a new start and a better understanding of who they are.
We are around halfway through our national autism strategy, launched in 2021, and I appreciate the additional funding and improvements to the diagnostic pathways that it brings. However, like everything in social services, autism services have been set back by the covid pandemic. Research by the Autism Society shows that the waiting list for autism assessment has grown by nearly 40%. Autism, as we have heard, is not a mental health condition, but it falls within the scope of the NHS mental health services dataset, as well as the community services dataset. Will the Minister look at setting up a separate dataset for autism and related conditions to give us a clear picture of the time from first referral to diagnosis and the beginning of support? I know that other Members have talked about that, too.
Can the Minister also assure me that, as part of our catching up in education, we will have further support for autism diagnosis and support in schools? We cannot afford to allow young people to slip through, because that would amount to a loss of support for them.
My hon. Friend is making an excellent speech. She will recognise that we are launching an inquiry into persistent absence from school. Does she share my experience that so many children are away from school because their parents do not feel that they are getting the support that they need? In many cases, clearer, earlier diagnosis and getting the right support in place would help us to solve that problem and help to make sure those children get the right support in the safest place for them to be.
I will speak mainly about ADHD because we have limited time, but I want to put on the record that autism services need more resources, and autistic people deserve support and aftercare following diagnosis.
Currently, as we have heard, there is no NHS waiting time standard for ADHD assessment. It is not generally measured and reported, so we have to use anecdotal evidence. In Leeds the waiting time for the first appointment is a minimum of two years, although it is often much longer. Adult ADHD services are a postcode lottery. Some areas have no adult ADHD service at all, and many others have waits of five years-plus.
On top of long waiting times and limited support, people with ADHD are often stigmatised. I have heard people deny its existence, claiming that children with the condition are simply not disciplined properly, and that adults just need to grow up and take responsibility for their shortcomings. Others say, “Everybody has those symptoms.” Of course, anyone can struggle to concentrate or might sometimes act impulsively, but having numerous symptoms present from childhood that are so intense and frequent that they take over your life is a very different thing. Neuroimaging studies have shown that there are structural differences in ADHD brains. ADHD is real, and without treatment it can ruin lives. Why, then, are clinical staff not routinely trained in adult ADHD?
One person I know was told that their GP refused to refer them for an assessment because they had what they considered to be a “good job” and so could not possibly have ADHD. I am sure that the academics, authors and MPs I know with ADHD would disagree. I want to share something that a constituent told me:
“As a child I was always the class clown type, constantly in trouble. At 9 years old I was taken to the doctors, who essentially told my mum that ‘boys will be boys’. As the years passed, my life became progressively more unmanageable. I drank and took drugs to excess, was unable to manage my finances, and ruined many of my relationships and friendships. The cycle repeated endlessly, until one day a friend who taught at a college said she reminded me of a few of her students who had ADHD. I looked into it and realised I ticked so many boxes, so approached the NHS for a diagnosis, and was put on a lengthy waiting list—with no information about how long I would have to wait for my assessment.”
They went on:
“A few months later, I was handed a short prison sentence after a violent offence. After getting out a few months later, I tried once again to contact the NHS team, but to no avail. It didn’t take long for the drink, drugs and reckless spending to start again. I was also made homeless. Eventually, a support worker got me an appointment with the NHS ADHD team. I was told that I did have ADHD but that my life was too chaotic to start treatment. Shortly after, I ended up back in prison. After getting out I managed to find a flat, got a really good job, met my partner and my life was going well. But as anyone with ADHD will attest to, healthy routines are almost impossible to keep up without proper support, and it wasn’t long until old habits crept back in.”
I listened very carefully to that story. The hon. Gentleman’s mention of the criminal justice system allows me to intervene to say that there are grounds for hope, because 48 neurodiversity support managers have been appointed in our prison system, with more to come, to screen and identify people with neurodivergent conditions. Does he agree that that is a step forward that is long overdue?
Absolutely. In a BBC interview in 2019, I called for compulsory screening and diagnosis for everybody who received a custodial sentence. So many people in our criminal justice system have ADHD, and we would save far more money if we screened and gave people treatment, rather than making them go through the awfulness of that experience.
My constituent continued:
“I realised I needed help, and contacted the NHS ADHD team that gave me my original diagnosis. I was told that even with the diagnosis, it would be an 18-month-plus wait and I would have to start the process all over again. In the end, I went private, which is extremely expensive. I pay a monthly fee for the calls with my doctor, a fee for the prescription, and a fee for my medication. It comes in at around £500 a month, which I can only afford because my mum died last year and left me some money. It was a struggle finding what worked for me, but I’m now on a treatment plan, which has changed my life. I don’t drink anymore, my relationship with my partner has improved dramatically. I’m managing my finances better and my performance at work is a level I’ve never hit before. Life is just so much easier and happier now.”
For so many, their ADHD is not known to them. They are not aware that they have it, but it is sitting there undiagnosed. Someone may know something is different about them, but they do not know what it is. Some people cope, but others just do not. My constituent’s story shows the transformative power of an ADHD diagnosis and treatment. It shows how people are increasingly turning to the private sector for help. I have to say that that appears to suit the Government’s agenda—to encourage provision out of the NHS and into the private sector.
ADHD and autism services are in crisis. They need proper funding for training, screening, diagnosis and aftercare. I do not want to live in a country with a two-tier healthcare system, where those who can afford it get support and the rest are left to suffer. I hope the Government will heed the calls made today and act to fix their broken system.
As we can see from the number of Members present, this is a really important issue. It is quite a personal one for me, my wife and my family. My heart goes out to everyone affected, including parents of children with autism and ADHD.
Most of us have experienced the despair of being at the school gate and having to drag our child out of the car and into school. It is agonising. There is guilt as well. When parents are focusing so much attention on one child, the others feel left out. Parents feel guilty about that. It puts pressure on marriages and on people’s relationships with their family and their children. Worst of all is not knowing where to turn to or who can help. A diagnosis is the starting point on the path to getting crucial help for both children and families. Waiting months—sometimes years—for a diagnosis is frankly unacceptable, and that theme has been picked up by Members.
I congratulate my hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) on his opening speech. As I say, this debate is quite personal to me, but I do not want to be too emotional about it in front of everyone here. The reason the debate is so crucial is that delays in assessments for diagnosis are one of the main reasons families contact me from across Dewsbury, Mirfield, Kirkburton and Denby Dale. Some families have waited up to two years for an CAMHS assessment, which has a significant impact on children’s ability to receive the support they need to access their education.
That is further compounded by delays in obtaining education, health and care plans in my constituency. An EHCP should be completed in 20 weeks. That is rarely the case, although it depends which council is involved. For example, Bradford issued 80.6% of EHCPs within 20 weeks and Leeds around 88.7%, but Kirklees—I see the hon. Member for Batley and Spen (Kim Leadbeater)—issued only 40.6%. That needs to be addressed. Why is Kirklees Council not performing as well as others? I am not making this issue political; some of these are Labour councils and they are doing better than us. I might be going out of scope, but the point I am trying to make is that, given the waits for assessments and EHCPs, children and families can wait three years or more to get the complete support that they need, and they definitely need it.
There is help at hand from some fantastic volunteer groups, in particular in my constituency and across West Yorkshire. The hon. Member for Batley and Spen has mentioned it already, but I have had various meetings with the West Yorkshire ADHD Support Group. I had the pleasure of being with it at the Make A Difference awards in Leeds, when it was presented with a volunteer award, which was well deserved, because it does great work. I do not like to mention the hon. Lady again, but we were both at the Christmas party in my constituency when Santa turned up, to meet the kids and their parents, and we went through all their experiences.
Last year, I met parents and children at Growing Works, which runs two-hour, weekly outdoor social support groups at weekends for families who have children with a range of additional needs. That is called the Sprout—Strong Parents Reaching Out—project. It is a vital support network for those undergoing this process.
In 2020 I wrote to the Department for Education to highlight the severe impact of CAMHS diagnosis delays on mental health and educational development as part of my submission to the SEND review, which, as has been mentioned, is coming out next week. My submission outlined the importance of a co-ordinated effort between school SENCOs—special educational needs co-ordinators —local authorities, health professionals, CAMHS, children and their families.
I therefore welcome that the total high-needs budget of £9.7 billion announced in July 2022 has been increased by £400 million to £10.1 billion as a result of additional schools funding included in last year’s autumn statement. That does not include the £325 million allocated for 2022-23 under the schools supplementary grant. I also welcome Kirklees’ designation as an education investment area in the levelling-up White Paper, with £30 million allocated to councils across the UK for positive opportunities in SEND support.
I am sympathetic to the petitions about increased funding but, as my hon. Friend the Member for Darlington (Peter Gibson) said, a change in finances will not necessarily resolve the issue. Instead, I look forward to working with the Government to ensure that we have a system that is fit for purpose, and suitable for the applicant, their family and the educational support network.
Finally, I have a message for those who are experiencing the challenges of getting a diagnosis or an EHCP to get their child to the right school: with the help of the right people, a positive outcome is possible. Your child could even end up completing a master’s degree at university—with a distinction, no less.
It is always a pleasure to see you in the Chair, Ms Fovargue.
I congratulate the Petitions Committee on not just scheduling the debate, but the surveys and outreach work it has done, which has come a long way since the Committee was first set up. What it does is really valued. I also think that the hon. Member for Carshalton and Wallington (Elliot Colburn) once again did justice to the topic that he presented.
Over recent years, awareness of neurodevelopmental conditions such as ADHD and autism has improved massively. I am slightly worried that we are seeing a bit of push-back, with people saying it is fashionable to have ADHD because a number of celebrities have come out and said that they have it, and almost casting doubt on the diagnosis behind that. We have heard people’s stories about how much they have gone through, wondering what is wrong with them or why they do not fit into society, and about the obstacles that they had to get through to get a diagnosis, so no one should say that this is something people do just on a whim, because they want to look cool. It is unfortunate that people say that.
Of the constituents who have come to me about this, a lot were diagnosed as adults. They had years of being misunderstood and having their abilities underestimated. A lot of them started out as very bright kids at school, but had something go wrong at secondary school, just because it was not designed to fit how they learned or how they conducted themselves in the classroom. They were often misdiagnosed as suffering from anxiety or depression, for example.
One of the things that struck me when constituents told me how they got their diagnosis is the role of GPs. It was sometimes very perceptive GPs who spotted that it might be ADHD after other people had not, and that was the gateway to a life-changing diagnosis. As well as talking about what mental health services can do, and about SEND and EHCPs, we need to ensure that GPs have the time to spend with their patients. They should be able to see their patients face to face if that is what is needed so they can play that crucial role.
There is wider understanding about children, but that does not always translate into practical knowledge of how to manage their needs, particularly if they have complex backgrounds. The mother of one of the children in my family was told that her child did not need another diagnosis because she already had physical disabilities linked to learning disabilities—it was like she had enough wrong with her, so she did not need something else. It was only when it reached crisis point that it was accepted that a physical disability is not treated in the same way as autism. Parents who come to us because they are struggling to get EHCPs really are at their wits’ end because of all the obstacles and the number of times they get pushed back by the system, particularly when they are suspected of being over-anxious parents.
In Bristol, we are seeing some progress in EHCPs. The number of children waiting for autism diagnostic assessments has gone down fractionally, and the health service is trying to recruit extra staff to carry out the assessments. For adults, particularly when it comes to ADHD, it is still pretty bad. At the moment, the waiting lists are about 14 months for children to be assessed for ADHD and autism. For adults, it is 12 months for autism but four years for ADHD.
I met a constituent, Jacob, who goes by the name adhdfatheruk on Instagram and TikTok. He was diagnosed as a teenager and often struggled at school. Many labelled his hyperactivity as bad behaviour, and his inattentiveness was put down to laziness. He is very keen to press for greater awareness of ADHD in schools. He thinks that training teachers to recognise the signs of neurodivergence could mean that children’s needs are picked up sooner, so they might face less stigma and be mislabelled less often. I would be interested to hear what the Minister has to say about that. Obviously, she is a health Minister, but that role in schools is really important.
My constituent Laura recently appeared on ITV News to talk about her son Zac, who is eight years old and has autistic traits. He was referred by his school in December 2020 and still does not have a diagnosis. When I raised it with the local autism hub, it said it was expecting to see him by summer 2022. Well, he has still not been diagnosed.
I tabled a written question to the Minister last month, and I was told that between July 2021 and June 2022, more than 95,000 children were in a position similar to Zac’s, with an open referral for suspected autism. That could be more than 95,000 children in limbo, up and down the country, just like Zac’s family. As I understand it, the Department of Health and Social Care does not collect data on ADHD assessments, so it is quite possible that many more thousands of parents of children with ADHD may be waiting.
I know many other Members want to speak, so I will conclude. We have heard from other Members how much more likely people with ADHD are to attempt suicide. One study showed that 35% of autistic people have at some point planned to take their own life.
It was very interesting to hear what the right hon. and learned Member for South Swindon (Sir Robert Buckland) said about assessments in the prison system. We know that about a quarter of the prison population meets the threshold for an ADHD diagnosis, and up to 19% may be autistic. Particularly at young offender institutions, we need to crack that if we are to stop that lifelong criminal offending.
Finally, we are still waiting to hear about the SEND Green Paper and the improvement plan. The consultation document was co-authored by the Department of Health and the Department for Education, but there was not much in it about the overlap with CAMHS. My final plea is that we need to ensure that, particularly in the case of children, we look at this as a SEND issue and are getting the EHCPs, but that, where mental health support is needed, the two organisations are talking to each other.
I thank the Petitions Committee for agreeing to the debate. This is a bittersweet moment for me: I brought a debate on this issue to this Chamber exactly one year ago. You were in the Chair, Ms Fovargue, and the same Minister was in her place. The kernel of my argument was that children in West Berkshire were waiting far too long for diagnoses of autism and ADHD, with sometimes devastating implications for their educational and social development.
I have been campaigning since then for no child ever to have wait more than one year for an initial diagnosis. That may sound as if it lacks ambition, but the reality for many children in West Berkshire is that the wait is more like three years. I would like to be able to say that there has been some progress. I had West Berkshire CAMHS in the dock last year, but I pay tribute to the service. I have spoken to the service a number of times this year and have relayed the impact of waiting times. The service has assured me that by March 2023, which is next month, it will have capped waiting times at two years, and by March 2024—in 13 months—it will have capped waiting times at 12 months, so my campaign will have eventually got there. But I regret to say that, of the many parents who wrote to me in advance of the debate, far too many still say that they have been waiting for much longer than that.
I will give a couple of examples; I could not possibly fit everybody in, which says something in itself. One lady, Kathleen, who looks after her two grandsons, told me about the 12-year-old boy, who is now approaching three years on the CAMHS waiting list:
“He is no longer in education. If I don’t get help soon I feel he is in danger of being criminalised due to his anger and behaviour being out of control”.
Another lady, Vanessa, told me about her eight-year-old son. She was initially told to expect a three-year wait, but says her GP pushed to get that reduced. She described filling in endless forms, and ended by saying:
“We are crying out for help he is 8 years old and seeing him so angry, upset and hating life is breaking our hearts.”
I know that the Government understand the impact of this issue, because they wrote about it, sensitively and with real understanding, in their SEND review, which was published last year. I look forward to hearing what they have to say about that, because I know there is more coming soon.
One of the petitions calls for an emergency fund. I can talk only about my local service. West Berkshire CAMHS received an extra £1.6 million in April 2021 to reduce waiting times. At the time, the service told me that it hoped that that would enable the recruitment of an extra 27 members of staff to help with diagnoses, and it has now recruited those people. None the less, it does not disagree that families continue to face long waits. The service has had an awful lot of extra money. I wonder whether there are other issues; I will touch on them today and invite the Minister to respond.
First, I wonder whether the system for diagnosis is too complicated. I know that the system falls between the Department of Health and Social Care and the Department for Education, and that there has been a surge in demand for diagnostic services of this kind. However, I find it surprising that the experience of every single parent seems to be the same, irrespective of whether the child is still in mainstream school. I would be grateful if the Minister could confirm whether there could be a flagging system at the initial point of triage, so that a child who is failing to access the curriculum or at risk of exclusion could be prioritised for diagnosis.
Another route I wanted to ask about stems from something that West Berkshire CAMHS said to me. I do not know whether this is true, but I will repeat what the service told me verbatim, which is that schools erroneously say that they cannot help until there is a diagnosis, although in fact they can on the presentation of need. If a school is confronted with a child who is presenting with typical ADHD-type symptoms, could there be an online tool, perhaps run by CAMHS, that would allow for a preliminary “We think it’s ADHD”? The child could then progress down that pathway while they wait. I do not know whether that is possible.
I also invite the Minister to comment on whether there could be better joined-up work between health and education services. In preparing for this debate, I refreshed my memory as to what she said when she responded to my debate last year. In that debate, the Minister talked about a £600,000 autism early diagnosis pilot taking place in Bradford that was creating testing facilities in
“at least 100 schools over the next three years to assess whether new approaches to…faster diagnosis can be rolled out across the country.”—[Official Report, 9 February 2022; Vol. 708, c. 382WH.]
That is a commendable pilot. By now, it must be at least a year in. After the debate, I went to see Ministers at the Departments of Health and for Education to see whether West Berkshire schools could join the pilot. Unfortunately, I did not get anywhere with that, and I have not had much of an update on the pilot either. I would be interested to know whether on-site testing in schools is now ready for roll-out, or at least how the pilot is going.
My final point about CAMHS is something that other Members have touched on. When I visited the Downs School—a secondary school in Compton—last Friday, a pupil told me that one of the limitations of CAMHS is that mental health issues such as anxiety and depression are bundled together with neurodiversity diagnoses. While there is sometimes an overlap between the two, they are, in fact, distinct areas. Could the Minister comment on whether she thinks the neurodiversity aspect of CAMHS would work better if it was completely separated from the mental health element?
I know there is no magic bullet for any of these issues, but the solutions and ideas I have presented, some of which come from CAMHS professionals and teachers, suggest a simplified, more streamlined and accountable approach to ADHD and autism diagnoses. I would like to hope that this time next year, we will not need to have this debate again.
It is a pleasure to see you in the Chair this afternoon, Ms Fovargue. I congratulate the hon. Member for Carshalton and Wallington (Elliot Colburn) on introducing this debate and on the many important points he made. I will certainly not repeat all the statistics that have been stated, as it is clear from what Members have said that there is a very serious issue here.
Instead, I want to focus on one particular statistic, quoted by the chief executive of the ADHD Foundation, which suggests that there has been a 400% increase in the number of adults seeking a diagnosis nationally. Between July and September alone, an estimated 170,000 people were prescribed at least one drug for ADHD, a 20% increase on the figure for the previous year. That is a huge increase in one year, and services have clearly been unable to cope with that increase. We have heard of some horrendous waiting times—I know that a recent FOI request by The Guardian showed that some people were waiting up to three years for an ADHD diagnosis.
However, I am afraid that in my part of the world it is even worse than that. My local adult ADHD service, provided by the Cheshire and Wirral Partnership NHS Foundation Trust, has been closed to new referrals since April 2019. Despite the trust saying that it would be taking new referrals from last year, we are yet to see any notification of that happening. It is really letting down people who need help. I have been informed that part of the reason why the trust closed its doors to new referrals was that the funding it was allocated between April 2018 and March 2019 was enough to provide capacity for 79 assessments, so when it received 362 referrals in that period it was clear that it would not be able to manage. However, to close altogether to new referrals is completely unacceptable.
The fact that the trust was telling people that they might wait up to five years for an assessment is also completely unacceptable. We would not accept a five-year wait for a physical condition, so we should not accept it for ADHD. We certainly would not close our doors altogether to new referrals in that case. Could the Minister indicate whether action will be taken to ensure that my constituents can be seen in a timely manner, and actually seen at all, when GPs are referring them for an assessment? Surely refusing to see patients or assess them for specific conditions is discrimination. It is certainly against the founding principles of the NHS.
Once we realised that that was a problem, we noticed that it was not only a problem with adults. As we have heard, there is a huge issue in education. The fact that more adults are now seeking diagnosis points to past failings in the education system. There is certainly increased awareness in our school system now, but that begs the question of what opportunities have been lost because people were not diagnosed or identified as needing assistance at an earlier stage.
However, as hon. Members have said, not everything is rosy in the education system now. Every Member of Parliament will be able to tell us about how parents feel they have to fight every step of the way just to get a referral. Then they have to fight to get adjustments in the school and seem to have a constant battle to ensure those provisions are maintained.
When the umpteenth constituent came to see me this year about delays in receiving an EHCP, I looked into why that was the case and found there is a huge shortage of educational psychologists. When one constituent was recently informed that their child could not have the assessment within the legal timeframe required because there were no educational psychologists available, I decided to look into the numbers. I discovered that the ratio of educational psychologists covering the Cheshire West and Chester area was one for every 5,822 children and young people.
That is a stark comparison to figures from 2017 to 2019, when a report from the Department for Education found that the average number for the whole country was one for every 3,500 young people, and in the north-west it was one for every 3,900. I would be interested to see whether those national and regional figures have changed in the last two or three years; I suspect they have gone in the wrong direction. I know the Government have spent around £32 million on more support and on training for educational psychologists, but if we do not have the people able to undertake the assessments, we will never get the backlog sorted.
I want to say a little about some of the impacts that is having on constituents. An individual who has a child with ADHD came to see me. They have just begun the EHCP process, which they understand will take a number of months, but in the meantime they are struggling to find a school that will take their child. The child has already been removed from one school because of challenging behaviour, and now they are being kept off school for their own and other children’s safety. My constituent has had to give up work, meaning both she and her child are losing out. From talking to parents, it seems that more and more children are dropping out of the school system altogether for a whole range of mental health issues. The number of pupils who are no longer on any school roll is a national scandal on which we need far more concerted action.
To end on a more positive note, I have heard from people with ADHD how transformative a diagnosis can be—the difference it can make to their lives and the sense it brings to some of the issues they have been struggling with, possibly for many years. That shows the importance of putting investment into diagnosis, to ensure that everyone gets opportunities to fulfil their potential. The waiting times we are talking about—five years, in some cases—are cruel and inhumane.
It is a pleasure to serve under your chairmanship, Ms Fovargue. I have had the good fortune of working with the ADHD Foundation, thanks to the work of my constituent, Jane Roberts, which culminated in my following quite closely some of the ins and outs, successes and not, of work on neurodiverse conditions. We had a beautiful display in Stroud to raise awareness, with a number of colourful umbrellas throughout the town. Many constituents asked, “What are these umbrellas?” and we were able to have conversations about what ADHD is and what needs to change to support people with the condition.
Day in, day out, I am battling for Stroud district parents of children with special educational needs. I am talking to the Government, local authorities, councillors, Ministers and health teams, but my efforts are nothing compared with those of the hundreds of Stroud families who are battling every single day to be heard. There are some really worrying decisions being made and situations for children, particularly those waiting for diagnosis or for an EHCP. One mum told me that her little lad with autism has an hour in a mainstream school, so by the time he has got his little coat off, he has to put it back on again and leave. We all know that a feature of autism is the need for stability and a steady day, which is absolutely not what this child gets.
Many parents are waiting for diagnosis for ADHD and autism. They are fighting to be listened to and to get a way forward. They are fighting to find the right person to talk to, or even to get a response in some cases. They are fighting for funding, they are fighting for dates, they are fighting to understand timelines and they are fighting against delays. All too often, they are being pushed into tribunals and getting into debt in the process, but they keep going because they are fighting for their children. Parents do not want their children to be labelled or medicalised, as is so often mentioned in response to these discussions; they want them to be understood, and they want to have the right support in place so that their children can thrive.
I am in my late 40s, so I went to school in the ’90s—Oasis, Blur, Kula Shaker and the Spice Girls. It is a long time ago now, and many of my peers are in all sorts of jobs. I have often wondered how many of us would have benefited from an early diagnosis of autism or ADHD when we were kids. Such conditions were not discussed when we were at school. It was not something that was raised or thought through. I am not surprised, therefore, that there has been a 400% increase in adults obtaining an ADHD diagnosis; it is because, unfortunately, this is quite new to many adults I talk to.
The parents and adults in Stroud who talked to me about these conditions said that there is nothing more discombobulating than constantly feeling that they are in the wrong job or career and do not understand why. They are never quite able to get the right help and are constantly changing things, such as diet and exercise; they will suddenly get medication, then come off it, but nothing helps. Again, adults who have had late diagnoses of autism and ADHD told me that they did not want to be medicalised or labelled; they wanted answers.
My hon. Friend mentions the delays to adults getting a diagnosis in years gone by. Is it not the case that that is because there has until now been a misconception that ADHD is a sign of bad behaviour and not a medical condition?
My hon. Friend is completely right, and he spoke movingly about his own family’s experiences of these conditions. It is incumbent on all of us in this place to try to raise awareness of what these conditions are and how they affect people. Of course, with every individual being so wildly different, people will have different outcomes and different behaviours. We should not write anybody off or put them into one single bucket.
For the parents and adults I have spoken to, it is a complete relief when they finally receive a diagnosis and get to talk to somebody. One woman said to me, “Of course, when I looked up the condition, everything in my life made complete sense.” We should have got there earlier in her case.
When the Government look at this, I know that Ministers will carefully study the evidence, the data and the targets—the very smart people in the civil service will be doing the same—but the data is wanting, as we have heard from many hon. Members, and so much is hard to quantify. How many jobs and careers have been lost through the failure to diagnose autism and ADHD early? How many opportunities lost? How many people are on depression and anxiety medication, when clarity about their health through an early diagnosis could have helped them? How many people are secretly self-harming, and how many have taken their own lives?
That leads to my constituent, Jane, whose son, Ben, sadly took his life in 2020. I remember early conversations with Jane on Zoom during the pandemic, when we were on lockdown. I would have fallen apart; she obviously has had incredibly dark moments, but in response to Ben’s death she has dedicated her life to trying to raise awareness about ADHD. She has invested £30,000—probably even more now—to ensure that there is early diagnosis for other children, and she funded the Umbrella Project I mentioned in Stroud.
Another constituent, Zaphira Cormack, has written to me about this issue. She founded the ADHD Hub in Gloucestershire last year. Since lockdown, she has seen an influx of adults seeking diagnosis, and daily she receives calls from parents struggling with children who are self-harming or suicidal. There was no pathway for children and young people in Gloucestershire, although this has now been commissioned for Gloucestershire, so we are hoping to see change.
I will be interested to hear from my hon. Friend the Minister, who is a hugely compassionate and knowledgeable Minister, and a nurse by background. I want to hear her views in response to some of the questions asked by hon. Members. Many people talk to me about the lack of understanding and awareness at primary care level, as GPs are often the first port of call when people have concerns. Parents are concerned in particular about lack of training, so I would like to know whether this is a feature of the work of the Department and whether anything is being done about training in primary care. I would also like to know how the Department of Health and Social Care is working with the DFE and local government, because we know that waiting times and the daily experiences of parents often do not sit with her Department when it comes to education.
I am very interested in the pilots that my hon. Friend the Member for Newbury (Laura Farris) mentioned. We would very much like some pilots in Stroud, if there are any going. I would like a comparison study to be done: when there are swift and early diagnoses, how many children and adults are found not to have ADHD or autism, because they had early treatment? My biggest fear is that people are waiting so long that they are ending up in a very difficult place, and they may go without education in the meantime.
My approach to politics is quite simple. Once we strip away all the drama in this very beautiful building, with political parties shouting at each other, saying that the other side does not care or does not have the right ideas, at the very core of this job is spotting problems and solving them. When family after family are telling all of us, across the House, that, at a time when we want everyone to be more productive and active, GPs, the NHS, central Government and local government do not have quite the right policies to ensure that children and adults can thrive in this country, we absolutely have to act, and we have to get in earlier. I am really looking forward to hearing from the Minister today.
It is a pleasure to be here under your guidance, Ms Fovargue. I congratulate the hon. Member for Carshalton and Wallington (Elliot Colburn), who introduced this debate, and the Petitions Committee on organising the debate, even though the petitions had not reached 100,000 signatures. This is a very important debate. We have heard heartbreaking stories from Members across the House. I am sure that the Minister will have noted the unity across the House on this matter and will respond appropriately.
I argue that there is a crisis in our country. It is a crisis for millions of individuals. I think it was said that there are 3 million people—children and adults—with ADHD and nearly three quarters of a million, at least, with autism. For each one of those people and for each of those families and households, this is a personal crisis. Of course it is a crisis brought on by the way in which we organise our society, but I will come back to that in a moment. I want first to record the experience of one family, although of course we all have many similar stories.
This is a family with a three-year-old son awaiting assessment for autism, sensory processing disorder and ADHD. He is non-verbal at three years old and has high sensory needs; he receives the high rate of disability living allowance. The referral in this three-year-old boy’s case was made in March 2022. As of two weeks ago, he had had no access at all to any support. The family are managing on two to three hours’ sleep a night. The mother felt it was necessary to give up her job to care for the boy—no doubt there are many mothers, fathers and grandparents all over the country doing similar things. The family spent every penny of their savings on home adaptations, and now there is no money left. The mother has had to go on to universal credit. Even if they wanted to go private, they could not afford it, and they should not have to do so.
[Dame Angela Eagle in the Chair]
There is a second case, on which I do not want to spend long because it is neither autism nor ADHD—it is dyspraxia, which is a related condition. A daughter was diagnosed and received some support, but the system failed to allow for her transition from school to university, which caused a great crisis in the family. We are seeing problems all over the country but, as I said in my opening remarks, these personal, familial and household crises are brought on by the way in which we organise our country.
We have heard these figures before, so I will be brief, but in England alone 120,000 people are currently waiting for an autism assessment, and 100,000 have waited more than three months, which is an important moment because NICE says that people should be seen within three months. That is a huge increase in the number of people waiting for assistance, diagnosis and treatment—a 40% increase in a single year. This problem exploded during the period of lockdown. No doubt there are a number of reasons for that, but these are individual human beings whose lives could be transformed if an early diagnosis was made and treatment recommended.
Late diagnosis causes problems for children in school, for the other children, for teachers and for parents and families. These children would be less likely to develop mental health issues later in life if they are diagnosed early, and the same is true of adults who are awaiting diagnosis. Both sides of the House agree that is clear.
I congratulate everyone who signed the petitions asking for Parliament to debate this subject, and I look forward to the Minister’s response. I do not want to strike a discordant note, but two Conservative Members raised the question of money. I am from Yorkshire, and Yorkshiremen and women do not like spending money, although it is occasionally necessary—moths fly out of my purse if I ever manage to take out a £5 note. ITN and the Bureau of Investigative Journalism did a careful analysis across the country, and they estimate that the true scale of the SEND funding crisis, the true financial black hole facing councils, is more than £1 billion, which is a staggering amount of money. It would be interesting to know whether the Government have an accurate assessment of how much it would cost to resolve these issues. After all, the Government can make a difference to people’s lives if they choose to act, which is what they should be doing.
I looked at the national autism strategy, which was published last year and offered peanuts to try to resolve some of these problems. I understand how difficult this is, and how we have to train skilled professionals; none the less, it offered peanuts. The Government promised that by the end of the strategy in 2026, which is years away, they would have made
“demonstrable progress on reducing diagnosis waiting times and improving diagnostic pathways for children, young people and adults across the country.”
That is not an ambitious statement. I do not want to be too discordant, because there is agreement on both sides of the House that this problem needs to be addressed and that we can transform lives. I am sure the Minister is fully conscious of that, given her professional background.
I will not continue too long, because a number of Members still want to speak, but I want to say that is important that we reflect on school admissions and exclusions. I wonder whether school academies, which are relatively autonomous and self-governing, have sufficiently strong guidance relating to children and young people who have what is called “challenging behaviour”. It may well be that some of them are challenging, but many of them have undiagnosed neurodivergent issues that need to be addressed. Is the Minister satisfied that there are sufficiently strong processes in place to prevent the exclusion, sometimes from more than one school, of young pupils who are neurodivergent? Eventually they either abscond or truant from school, or are simply kept at home by their parents because they feel that the system is almost abusive to their child. I say that because I have become aware of large numbers of people over the years whose children have been excluded from school and who subsequently said that they realised that their child had undiagnosed and unaddressed health problems. I have to say that it seemed to be a particular issue in school academies. I wonder whether the Minister has had a look at that and whether she could write to the relevant Committee with any data on that matter.
It is a pleasure to serve under your chairmanship, Dame Angela. I thank the petition organisers and the many people who signed it for ensuring that we could debate this incredibly important subject today. Many lives have been affected by delays in diagnosis, as evidenced by the huge number of MPs we have heard speak today. We talk about numbers and timeframes, but the thing that makes this situation entirely unacceptable is the scale of impact on all these individuals, their lives and the time they spend without the support they need.
One of my constituents shared his story with me. Around six years ago, Ben began having increased periods of depression, which eventually led to a situation in 2019 where he went through weeks of being unable to sleep and being confused and distressed, with suicidal ideation. Ben was referred by his GP for an autism assessment. It took more than three years for Ben to be diagnosed—three unbearable and unpredictable years of miscommunication, waiting and suffering for him and his family.
It is not just about the time. It is about the fact Ben continued to live undiagnosed with unmitigated challenges that impacted hugely on his work, social life and family life. It had a huge impact on his ability to focus and sleep and on his concentration and memory. He also suffered from rejection sensitive dysphoria. Ben has managed to turn the pain of his experience into energy. Alongside his wife, he has set up an autism charity to support other families dealing with the impact of autism. Too many people like Ben are left waiting, wondering and suffering for way too long. We must do more.
In my part of the world we have some incredible charities that work to support people with ADHD and autism. Daisy Chain is a fantastic Stockton charity that was set up by the late Lesley Hanson when her son was diagnosed with autism. It started life as a small charity but has gone from strength to strength. It now offers the lifeline of life-changing specialist provision to more than 3,000 families and neurodiverse individuals every year. I recently met with Daisy Chain and heard about the incredibly work it is doing to support people and ensure they can live their fullest lives.
I have also met representatives of the Stockton Parent Carer Forum, which supports families of children with special educational needs, providing an incredibly valuable place where parents can share experiences and seek advice. Importantly, it helps signpost parents to support and helps to try to mitigate any impact on children’s development and education. All of these specialist organisations deserve our thanks. They make an incredible difference to the lives of many people across Stockton, but they all share concerns about waiting times and the support made available to those suffering from autism and ADHD.
In the last five years, the number of people being treated for ADHD has risen by 80%. People with ADHD are five times more likely to commit suicide than somebody without the condition. That is why reducing waiting times for diagnoses and providing support for people with ADHD is so important. Currently, one third of adults awaiting assessment have been waiting for longer than 13 months. Those people are unable to receive much-needed support and medication while awaiting diagnosis.
I welcome the Government’s commitment to addressing the issue and improving the diagnostic pathway and care for people with ADHD. By 2023-24, children and young people with a learning disability or autism—or both—with the most complex needs will have a designated key worker. That will improve the care and support they receive. I look forward to hearing from the Minister about what the Government are going to do to drive down unacceptable waiting times and improve the support available so that those with autism and ADHD can live their lives to the full.
It is a pleasure to serve under your chairship, Dame Angela. I thank the hon. Member for Carshalton and Wallington (Elliot Colburn) for opening this afternoon’s debate, and the constituents from Rutherglen and Hamilton West who signed the e-petitions. Although health is a devolved policy area, this issue affects people right across the United Kingdom. It is with that in mind that I speak here today, and I will focus specifically on the impact on women and girls.
Attention deficit and hyperactivity disorder and autism are chronically underdiagnosed and misdiagnosed in women and girls. Primarily that is because, broadly speaking, the conditions present differently than in males. There is also the fact that owing to societal pressures and expectations, women often become adept at masking, developing techniques to hide the conditions from others to avoid being stigmatised, or to feel accepted.
For the most part, women are into adulthood by the time they receive a diagnosis. One of my own staffers is a prime example and she has given me permission to mention this today. She was not diagnosed with ADHD until she was 24, and it was another year before the service she was under could provide her with a treatment plan, because slots were so limited.
Sometimes it is only after women have had their own children, usually sons who receive a diagnosis, that they begin to realise they share the traits and pursue a diagnosis for themselves. Even when that is not the case, diagnosis is often delayed by years because girls and women are highly likely to be misdiagnosed with a mood disorder such as depression, bipolar disorder or anxiety disorders. Both autism and ADHD are often viewed through the lens of mental health, but they are not at root mental health issues. The brain is literally wired differently. It is neurodevelopmental.
The image we conjure up in our minds when we think about ADHD is probably an outdated stereotype—a naughty little boy disrupting a classroom. We are more likely to focus on the H in ADHD—hyperactivity in its most obvious sense. Women and girls are more prone to an inattentive or combined type of ADHD where the hyperactivity is not external but internal. Many women and girls describe a constant and endless stream of thoughts and ideas that never quieten, never stop. Naturally, that is very distracting. So how does that manifest itself?
School-age girls might be dubbed daydreamers. School reports have comments such as, “Bright, but needs to apply herself better”, “Clever, but makes silly mistakes”, or, “Needs to stop chatting”. It is often dismissed as just that: “She needs to try a bit harder, concentrate a bit better”, but rarely is it looked at any closer. That constant over-thinking, never-ending activity in the brain as they start to get older often starts to spark secondary symptoms or conditions. That is where the misdiagnoses of depression, anxiety and more come in. They are treated for the secondary symptoms that are much more easily identified, but unfortunately rather ineffectively. If someone is not looking at the underlying cause, it is just plastering over the cracks.
If a woman or girl does not suspect that they have ADHD or autism, they are reliant on their GP picking up on the signs. In a short 10-minute or so appointment, a GP does not have the time to dig deeper than the surface level and recommend a referral to a specialist service. Those specialist services with psychiatrists qualified to assess, diagnose and support patients are few and far between.
When access to the right support is so life changing and necessary, it is downright depressing for someone to be told that they might have to wait a year, 18 months or two years before they will even get in front of the right person to start the process. The cost of an initial ADHD assessment appointment is somewhere between £500 and £800, but it can be up to thousands and several appointments are often required to make a diagnosis. The average monthly cost of a private prescription for ADHD medication is around £100. The average cost of an autism assessment is around £2,500. Even when we are not facing an economic crisis, those are huge amounts of money that most people and families just cannot spare.
It is important to recognise that diagnosis is just the beginning. People with both conditions benefit from treatments, such as cognitive behavioural therapy, and the state of the waiting lists for those is equally as dire. Sometimes CBT is essential to the development of coping mechanisms and strategies that allow neurodivergent people to get their lives in order for the long run.
The prevalence of illicit drug use in people with undiagnosed ADHD is not spoken about often because of the stigma, but it is essential to understanding what a lack of resourcing in the healthcare system can lead to. ADHD is often treated with stimulants, which are controlled drugs. Stimulants affect the neurodivergent brains of those with ADHD differently from those without it. The length of waiting lists inevitably means that people will want to find alternative ways to relieve their symptoms. People with ADHD are more likely to have addictive personality types, which can lead to tricky territory. Illicit stimulant drugs, such as cocaine and amphetamines, can have a similar positive-feeling effect on the ADHD brain in a way that they do not on others, so when those with undiagnosed ADHD try those drugs for the first time, they may be surprised at the effects. For that reason, cocaine use in university students with the condition is not uncommon. They make the connection and realise they have found a way to relieve symptoms to allow them to study. With earlier access to the right support, that would be avoidable.
It is really concerning that illicit drugs are easier to access than a diagnosis and a treatment plan. We do not want to see situations where, once diagnosed with ADHD, people are not allowed to access the right medication because of previous drug misuse, which could have been avoided with earlier intervention and access to prescribed treatment. It is really important to point out that ADHD medication is carefully monitored through titration and beyond, while self-medication is not.
The petitions are calling for access to urgent support. I wholeheartedly support those calls. So many constituents are under immense pressure as a result of completely unacceptable waiting times. Waiting lists have been creeping up for years. Improving recognition of the conditions in women and girls, which has led to more requests for assessments, may be part of the reason, but the biggest reason by far is the lack of funding.
I hope that the Minister will be in a position to provide more than just assurances. I hope she can provide a funding commitment for those in England. I hope she can tell us what discussions the Government have had with the Scottish Government about service provision and how funding will be replicated in the devolved nations. I hope that the Minister will be able to shed some light on the Government’s work to support NHS boards to recruit and retain expertise.
Children, adults and parents cannot wait endlessly for someone to address what is now beyond a crisis. They deserve better recognition and support, and they deserve it urgently.
I have learned a great deal from so many of the speeches that it seems invidious to pick out anyone, but I would like to compliment the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) because of her concentration on treatment. We have heard a great deal about diagnosis, but I was interested to hear about what the treatment options are.
I have no medical expertise or qualifications, but it is fairly obvious even to me that although many people who experience severe sleep disruption are not suffering from ADHD, people who are suffering from ADHD also commonly seem to have the terrible burden of a huge shortage of high-quality, slow-wave, deep sleep. Anyone who knows anything at all about the methods of interrogation and torture used by totalitarian regimes will know that the strongest and bravest person alive can be broken if they are incessantly deprived of decent, slow-wave, restorative sleep. It is appalling that young people and older people struggle for years before they receive a diagnosis that might lead them to the sort of treatment that could ameliorate the suffering described by the hon. Member for Rutherglen and Hamilton West and many others, so I hope and trust that this debate will go some way towards alleviating that situation.
In the short time available, I will touch on the three cases that I alluded to earlier in a brief intervention. They are all different. The first case is of an 11-year-old boy who was correctly diagnosed as having ADHD three years ago. His mother says that the problem is that CAMHS locally has no full-time psychiatrist who can provide the medication that he needs. Admittedly, the letter about this case came to me only within the last few days, so my office and I have not yet had the chance to find out if that statement is in fact correct, but if it is, that is obviously a serious gap in the system.
The second case is worrying because it involves the consistent refusal to give an ADHD diagnosis for a 12-year-old boy whose widowed mother, after a very long delay, finally gained access to the notes of his previous assessments, which were clearly full of demonstrable inaccuracies. For example, it was suggested that it was the loss of the husband and father that was causing the child such disturbance, when in reality the child had been struggling with his symptoms since the age of three—long before the loss of his father. Indeed, the notes also suggested that the child was affected by having to move out of the family home to live with grandparents, when in fact no such thing had happened. So, even allowing for the fact that I am hearing only one side of the story, it seems unlikely that my constituent could misreport such incontrovertible issues of fact.
I will finish with the final case, which involves a young lady who contacted me specifically to urge me to take part in this debate. I spoke to her on the telephone just before it began and I have her permission to quote from her letter to me, in which she says:
“I was recently diagnosed with ADHD myself, having been able to access an assessment through private medical insurance. Not only are the waiting lists for NHS assessment unduly long but the knowledge and experience of doctors and psychiatrists of the condition is, in my experience, severely lacking.
My mental health first deteriorated to the extent that I needed psychiatric intervention in 2018. At this point, I was suicidal. I had read about ADHD and mentioned to the psychiatrist that I believed that I had it. His response was, ‘I don’t know a lot about it, other than that it’s very difficult to diagnose as an adult and the medication is amphetamine, so you probably want to think very carefully about pursuing that.’”
She then gives a long list of severe symptoms and difficult experiences through which she had to pass, culminating in her making plans to end her own life. She says:
“If it weren’t for one GP questioning the dosage of the aforementioned antidepressant”—
which she was being incorrectly prescribed—
“and actually listening to me, I would probably have spent the last 6 months taking medication I didn’t need and still not have an answer. And there is a distinct chance that I might not be here at all.”
She concludes, and I endorse her point, that she was in the fortunate position of being able to get a private diagnosis. Celebrity cases are frequently diagnosed on the basis of a private diagnosis. There is something wrong if we have a two-tier system whereby those who can afford to pay can find out what is wrong with them, while those who cannot have to carry on thinking that they know what is wrong but without ever getting a diagnosis until perhaps, in some cases, it is too late.
It is a pleasure to serve under your chairship, Dame Angela, and to follow the right hon. Member for New Forest East (Sir Julian Lewis), who made a powerful speech advocating on behalf of his constituents. I thank the Petitions Committee for granting this debate, and congratulate the hon. Member for Carshalton and Wallington (Elliot Colburn) on leading it.
In the UK, as has been said, about 700 people have autism and about 3 million have ADHD. The average waiting time for a diagnosis is far too long, with some adults having to wait up to seven years for an ADHD diagnosis. Barnsley East is in the top 10% of constituencies with the highest rate of special educational needs. A number of local people have contacted me about their struggles to get the right diagnosis, especially for children, in an appropriate timeframe. They are frustrated with a system that seems to hinder access to support. In Barnsley, the average waiting time for an ADHD diagnosis for under-fives is 10 months, and the average waiting time for those aged five to 16 is among the highest in the country, at two years and four months. Until 2021, Barnsley had a funding black hole of more than £35 million for SEN provision. There is a desperate need for more resources and for the Government to act to enable local authorities to deliver for their communities.
The NHS suggests that the wait for an ADHD diagnosis can be damaging to children, as in the meantime they are likely to miss out on education due to wrongfully being punished for symptoms of undiagnosed ADHD. They also often suffer with anxiety, depression, dyslexia and even epilepsy. Those with undiagnosed autism are likely to struggle living independently, maintaining employment and creating interpersonal relationships. It is clear that the system for diagnosis is inadequate, and it is unfair that people are suffering because of it.
A number of people have been in touch with me over the past few years to share their experiences, especially as parents seeking support for their children. I and my hon. Friend the Member for Barnsley Central (Dan Jarvis) recently held a meeting in Barnsley to speak with parents who are trying to navigate the system and secure support for their children. They told us that they experience difficulty in getting a diagnosis and in accessing specialist provision, and they also spoke of ongoing care issues. This included but was not limited to ADHD and autism provision.
NICE recommends that the maximum wait for the commencement of an assessment should be three months for autism. However, even if an assessment has begun, that does not mean that a diagnosis will be achieved quickly, as we have heard in this debate. Many are stuck in the system for months or years after the process has started. There is currently no advisory wait time for an ADHD assessment. The Government do not even include data on ADHD diagnoses and waiting times, and have expressed no desire to do so, even though, as has been said, there was a 34% increase in the number of people waiting for an ADHD assessment between 2021 and 2022.
For both conditions, there is a postcode lottery of assessment and diagnosis, meaning that access to much-needed services is effectively restricted depending on where someone lives. Most respondents to the Petitions Committee survey stated that waiting times for assessment for both ADHD and autism are inadequate.
This, of course, speaks to a larger issue of worsening regional inequality over the past 13 years. As the backlog of urgent healthcare cases gets longer, assessment and support for long-term conditions such as ADHD and autism are pushed further backwards. The majority of respondents to my local SEN survey said that it was either difficult or very difficult to access SEN provision. This must change. More data on waiting times for neurodivergent conditions needs to be collected. We need to end the postcode lottery of assessment and diagnosis. Most importantly, to achieve that, more resources must be committed so we can speed up diagnosis and provide the support that is needed for people with ADHD and autism.
What a pleasure it is to close for the Opposition with you in the Chair, Dame Angela. I thank the hon. Member for Carshalton and Wallington (Elliot Colburn) and the Petitions Committee for securing this incredibly important debate. I also thank every person who signed the two petitions, and everyone in the Public Gallery for their time, patience and commitment to the cause, which has led to them to sit here for a number of hours. We are all very grateful to have them here.
Normally, when we close, we pick a few comments from those on our own side to praise, but every single contribution to this debate has been heartfelt. Many have been personal, and every single one has added a great deal to the discussion. It is always a pleasure to see cross-party agreement in this place that an issue absolutely needs to be dealt with.
Some of the take-homes, which are really stark, are things that I knew already but which have been brought to the forefront of my mind yet again. For example, hon. Members raised the increased suicide rate among those with ADHD and autism. It is a wasted opportunity for a life well lived when someone takes their own life. That could have been avoided if they had early diagnosis and treatment, and that is why it is so important that we are here today.
On the postcode lottery, it is alarming that there is a real divide based on where someone lives, how much money they have and their ability to access private care. As a parent, I understand the desperate feeling—although not with regard to autism and ADHD—of just wanting the best for one’s child. I have many friends, colleagues and constituents who live in purgatory—they just want to know when they can get help and support for their child. The feeling of being at the school gates and not knowing what kind of day their child is going to have stays with them for the entire day, so they cannot even concentrate at work. Many parents take time off work, so are unable to contribute to the economy, to raise children who will never fulfil their potential because they have been let down.
In 2021, the Government committed to making progress on reducing diagnosis waiting times in their national autism strategy for England. However, the latest data shows that more than 125,000 people are currently waiting for an autism assessment—an increase of more than 30% in the past year alone. The vast majority of those people are waiting longer than the National Institute for Health and Care Excellence’s recommended 13-week wait, and far too few have a care contact each month.
Far too often, there is sadly a postcode lottery when it comes to access to a timely assessment. Waiting times are still far too long in many parts of the country, leaving some autistic adults and children waiting many months or even years for a diagnosis.
A constituent of mine, a woman in her late 20s, will not mind me telling the House of the letter she sent me to confirm that she had been accepted on to the waiting list, but it is expected to be 36 months before she is seen. That is 36 months of insecurity in the workplace, in her marriage and in her life.
Reports are emerging of patients having to spend thousands of pounds on private healthcare to get a much-needed assessment and diagnosis. Frankly, patients and their families are being failed. That is simply not good enough. A diagnosis of autism or ADHD is vital to accessing appropriate support, which we know can make such a difference. Concerning reports have emerged recently of people waiting up to five years for an ADHD assessment. That is five years without the crucial support that they need and access to services.
For ADHD assessments, there is no NHS waiting time standard. How can it be right that we have no idea of the number of people waiting for assessment? Without routinely published figures, we cannot get a handle on the scale of the issue. Will the Government please reconsider that?
Without a formal ADHD or autism diagnosis, many people will struggle at school, in the workplace and at home. It is crucial to understand that people with autism or ADHD are more likely to experience mental illness and, all too often, end up in crisis and, at the very worst, taking their own life. Imagine the desperation someone must feel to do that.
Over the past few months, I have been honoured to sit on the Joint Committee on the reform of the Mental Health Act 1983. In an evidence session, we heard from Alexis Quinn. Her evidence cut to the core of how patients are being failed and why the Government must act. For anyone present who does not know, a misdiagnosis meant that Alexis was locked inside in-patient mental health settings for three years. Eventually, she had to flee the country to get help. It is inhumane that autistic people can end up detained in inappropriate settings because they are incorrectly diagnosed. I thank the National Autistic Society for feeding into the draft Bill and for its input during the pre-legislative Joint Committee —its evidence was vital.
I appreciate that this debate is specifically about assessments, but I would like to hear from the Minister about what the Government are doing to provide tailored, appropriate care for people with autism or ADHD after the assessment stage. Speedy access to an assessment is prevention in action—prevention of worsening mental health in people with ADHD or autism—yet the Government fail to ensure that assessments are readily available. How many more people with ADHD or autism will be left behind, stuck on long waiting lists with their mental health steadily worsening, before this Government finally get their act together?
I know that we do not like to play political football in this place—well, we do, but this is not one of the issues on which we ever like to do it. I know that the Minister is full of integrity and cares greatly about this issue, but we need the Government to take their head out of the sand and to take action on waiting lists. The NHS does an incredible job with the resources that it has. However, long waits for treatment have a considerable impact on patients and families. It is heartbreaking to hear Members in this Chamber talk about constituents who have lost children—children who felt that there was no other option but to take their own life. That is a failing of what we can do in this place to make things better. There is a moral imperative on us to do that.
When will the Government increase capacity and resourcing to ensure that waiting times for assessment can be reduced? It is unacceptable that a six-month wait has become the standard for autism referrals, with many adults waiting years to be seen. The Government keep kicking vital health strategies into the long grass, with yet another new strategy scrapping those that came before it. There is no clear message from the Government about what that means for people living day to day with autism or ADHD. Will the Government please now outline whether future work on major conditions will tackle waiting times for assessment of autism and ADHD?
I truly believe, unfortunately, that the longer the Conservatives are in power, the longer patients will wait, because a 13-year track record has nothing to show us other than that fact. Labour will lead on early intervention and prevention by providing a mental health specialist in every school, allowing children with ADHD or autism—who disproportionately experience mental illness—the ability to access mental health support in their school. This debate is timely, because it is Children’s Mental Health Week, and perhaps that policy could be adopted in a cross-party way to ensure that children do not have to wait in the way that they are doing. For people with ADHD or autism, receiving an assessment is the first step to accessing often life-saving support. We cannot allow people to be failed at the first hurdle.
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.
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?
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.
I do not want to detain Members much longer, as we have had a long debate. I thank the Minister for being so honest and up front about the scale of the challenge. I know that is greatly appreciated.
The scale of the challenge has also been felt throughout the huge range of contributions we heard. I am grateful to the hon. Member for Enfield, Southgate (Bambos Charalambous), my hon. Friend the Member for Darlington (Peter Gibson), the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar), my hon. Friend the Member for Meon Valley (Mrs Drummond), the hon. Member for Leeds North West (Alex Sobel), my hon. Friend the Member for Dewsbury (Mark Eastwood), the hon. Member for Bristol East (Kerry McCarthy), my hon. Friend the Member for Newbury (Laura Farris), the hon. Member for Ellesmere Port and Neston (Justin Madders), my hon. Friend the Member for Stroud (Siobhan Baillie), the hon. Member for Hemsworth (Jon Trickett), my hon. Friend the Member for Stockton South (Matt Vickers), the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier), my right hon. Friend the Member for New Forest East (Sir Julian Lewis) and the hon. Member for Barnsley East (Stephanie Peacock).
I am grateful to hon. and right hon. Members for their attention to detail. In particular, I thank the petitioners for bringing us here today to talk about this important issue. I thank the representatives from ADHD UK and the Autistic Society, and the many charities who have helped and briefed us in advance of today’s debate. I thank the TV and radio host Melanie Sykes for all of her input and briefings, as well as the creators of the petition, Jess and Lisa.
It is very clear that the situation with waiting lists for autism and ADHD assessments is desperate and requires urgent attention. These are waiting lists that we would not accept in any other area of the NHS. We are poorer as a country for not taking full advantage of the talents that neurodiverse people can bring. That was illustrated by the fact that there were interventions from the Chair of the Education Committee, my hon. Friend the Member for Worcester (Mr Walker), the Chair of the Health and Social Care Committee, my hon. Friend the Member for Winchester (Steve Brine), and the Chair of the Women and Equalities Committee, my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes).
There is still a lot of work to do. I hope we do not have the same discussions next year, and instead can come back to celebrate success. I am grateful to Members for their attention and to those in the Public Gallery for their attendance.
Question put and agreed to.
That this House has considered e-petitions 589667 and 597840, relating to assessments for autism and attention deficit hyperactivity disorder.