- [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.]
- 4:30 pm
- 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.
- 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.
- 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?
- 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.