Autism and ADHD Assessments

Rosena Allin-Khan Excerpts

Monday 6th February 2023 Westminster Hall

[Dr Rosena Allin-Khan (Tooting) (Lab)]

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.