Autism and ADHD Assessments

Elliot Colburn Excerpts

Monday 6th February 2023 Westminster Hall

[Elliot Colburn (Carshalton and Wallington) (Con)]

I beg to move,

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.

[Sir Peter Bottomley (Worthing West) (Con)]

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.

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[Elliot Colburn]

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.

[Steve Brine (Winchester) (Con)]

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?

[Elliot Colburn]

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.

[Kim Leadbeater (Batley and Spen) (Lab)]

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.

[Elliot Colburn]

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.

[Paul Bristow (Peterborough) (Con)]

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?

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[Elliot Colburn]

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.

[James Sunderland (Bracknell) (Con)]

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?

[Elliot Colburn]

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.

[Caroline Nokes (Romsey and Southampton North) (Con)]

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.

[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.

[John Howell (Henley) (Con)]

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?

[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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[Elliot Colburn]

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.

Resolved,

That this House has considered e-petitions 589667 and 597840, relating to assessments for autism and attention deficit hyperactivity disorder.