Autism and ADHD Assessments

Mark Eastwood Excerpts

Monday 6th February 2023 Westminster Hall

[Elliot Colburn]

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.

[Mark Eastwood (Dewsbury) (Con)]

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?

[Elliot Colburn]

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.

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[Elliot Colburn]

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.

[Mark Eastwood]

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?

[Elliot Colburn]

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”—

by 2026—

“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.

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[Mark Eastwood]

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?

[Bambos Charalambous]

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?

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[Mark Eastwood (Dewsbury) (Con)]

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.

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[Siobhan Baillie (Stroud) (Con)]

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.

[Mark Eastwood]

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?

[Siobhan Baillie]

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.