Autism and ADHD Assessments

Debate between Elliot Colburn and Mark Eastwood

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.

--- Later in debate ---

[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.