ADHD Diagnosis and Treatment

Tuesday 15th May 2018 Westminster Hall

16:17

[Jo Platt (Leigh) (Lab/Co-op)]

I beg to move,

That this House has considered the diagnosis and treatment of ADHD.

It is a great honour to serve under your chairmanship, Mr Streeter. A few months ago the enormousness of the struggles and barriers that those with attention deficit hyperactive disorder face on a daily basis was brought to my attention by an inspirational woman who approached me in the hope that we could establish an all-party parliamentary group for ADHD. Seven months later, I proudly chair that APPG, along with the hon. Member for Faversham and Mid Kent (Helen Whately). We have held our launch and our first meeting, which was on the economic impact of ADHD, and today we have our first parliamentary debate on the diagnosis and treatment of ADHD.

That inspirational woman is Michelle Beckett, the founder and CEO of ADHD Action, an incredible charity set up to support and offer advice to people struggling with their condition. Everyone on the APPG, some of whom are here today, would agree that we would not be here today without Michelle’s work and dedication to the issue. I would therefore like to place on the record my thanks, and those of the APPG, to Michelle for the incredible work she does.

In the months since we created the APPG, I have become ever more shocked by the stories and experiences shared with us about the diagnosis and treatment process that has been letting people down. It has been doing so in three ways. The first is stigma and attitudes. That is true of mental health more generally, and I am pleased that this debate is during Mental Health Awareness Week, which is a yearly reminder of the progress yet to be made in treating mental health in parity with physical health.

Looking at societal attitudes to ADHD in particular, we see a variety of misconceptions and stigmas. ADHD is often seen as a condition that only affects boys. It is sometimes interpreted as the product of poor parenting or just excused as naughty children playing up. All those ideas are false, but the impact of those misconceptions is enormous. Children may not be offered the correct support, and adults with the condition are often undiagnosed or even unaware that they might have ADHD.

An undiagnosed child in school, without the support they need, will in all likelihood fall behind their classmates and struggle to obtain top grades. Almost half of all school exclusions involve pupils with special educational needs. That is a truly shocking statistic, and it underlines the importance of exploring further ADHD-specific policies, perhaps in the mental health Green Paper or as part of the special educational needs and disability code of practice.

[Mike Hill (Hartlepool) (Lab)]

As my hon. Friend knows, ADHD can continue into adulthood. A constituent of mine is lobbying for it to be given the recognition it deserves. Does my hon. Friend agree that ADHD should be classed as a disability for the purposes of the law, including accessing benefits?

[Jo Platt]

I thank my hon. Friend for that intervention. He is right that we need more awareness of ADHD. I know that people who suffer with ADHD have called for their own Act—something similar to the Autism Act 2009.

In the midst of cuts to school nursing provision, and a school funding and teacher recruitment and retention crisis, the number of school exclusions of pupils with special educational needs is no fault of our hard-working, dedicated and professional healthcare workers and teachers; it is the product of an underfunded and under-resourced health and education system. We cannot go on treating children with ADHD simply as naughty kids, and being unable to afford the time or resources to help them. Instead, we must support those young people and focus their education around their skill set.

The second way we are letting people with ADHD down is through diagnosis. A recent survey with more than 800 responses revealed that 70% of respondents had waited 18 months or more for an ADHD diagnosis, 9% of whom were, shockingly, waiting for more than three years.

[Alex Sobel (Leeds North West) (Lab/Co-op)]

I recently asked three parliamentary questions on waiting times for assessments for ADHD, and for all three the response was that those figures were not collated. We cannot do anything about it until we have accurate data. Does my hon. Friend agree that the Minister and the Department should be collating that data?

[Jo Platt]

I thank my hon. Friend, the vice-chair of the all-party parliamentary group for ADHD, for that intervention. He is absolutely right to mention that the lack of data causes a mismatch and a bit of a postcode lottery, which I will address later.

At a recent APPG meeting, we heard stories of people waiting years for a diagnosis—years battling without the support or guidance they need, falling behind in school, or struggling in their occupation. We heard stories like that of my constituent Mick, whose son has suffered enormously, falling into crime before he was diagnosed, which unfortunately is all too common. About 25% of male prisoners are thought to have ADHD.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

I congratulate my hon. Friend on securing this important debate. She mentioned that about 25% of male prisoners are thought to have ADHD. Does she agree that early intervention and diagnosis of ADHD would not only reduce crime and save money, but improve the life chances of people with ADHD who fall into the criminal justice system?

[Jo Platt]

I completely agree. ADHD in the criminal justice system is an area that evidently needs a lot more investigation. The simple fact that an estimated 24% of the prison population are thought to have ADHD is a cause for concern.

[Dr Dan Poulter (Central Suffolk and North Ipswich) (Con)]

I congratulate the hon. Lady on securing the debate, and I draw attention to my declarations in the Register of Members’ Financial Interests. To enable early diagnosis, or any diagnosis at all, having the workforce in place is key. Recruitment of specialist child and adolescent mental health services doctors is a real problem. Unless we get that right, we will not deliver the service that patients and their families deserve.

[Jo Platt]

I thank the hon. Gentleman for that intervention. I completely agree that we need to highlight the workforce, but before we do that we need the data to see how many people we need in all workforces. Again, I will come to that point later.

[Martin Docherty-Hughes (West Dunbartonshire) (SNP)]

I congratulate the hon. Lady on introducing today’s debate. Do they agree that one of the additional complexities in the workplace is the bureaucracy of the workplace assessment? If the Minister takes anything away from today regarding those living with ADHD in adulthood, it should be that that process urgently needs review in terms of its effectiveness and the impact on those with ADHD in the workplace.

[Jo Platt]

I completely agree. We have focused on young people in school settings, but that affects adults enormously.

I received a message from a constituent, Diane, who felt that she was different at school. Diane’s story speaks to the point, made by the hon. Member for West Dunbartonshire (Martin Docherty-Hughes), that adults are affected too. Diane went under the radar as she was high-functioning. She passed her GCSEs but failed at university as she felt that she could not concentrate. Diane developed mental health issues and has spent most of her life on anti-depressants, which she found did not work. She was unable to keep a job or a relationship, and in her 30s she tried to take her own life. It was only when her doctor advised her to be tested for ADHD and she was treated appropriately that her life turned around. That is not an uncommon story.

Since the debate was publicised on the House of Commons Facebook page last week, it has become clear that the scale of the diagnosis crisis is even greater than I could have imagined. The post was seen by 37,000 people and was engaged with by more than 1,000 people, shared right across the country. We saw stories of five-year waits and longer, of people forced to get a private diagnosis costing up to £1,000, and of children in school without the support they need. I urge the Minister to head to the Commons Facebook page and read some of the powerful stories.

After reading those stories, I could not help but wonder how in 2018 our healthcare provision can be so unresponsive to a condition that affects so much of the population. Earlier I quoted from a survey but did not state what the average waiting time is for a diagnosis across the country. That is because such information is not collected by the NHS or the Department of Health and Social Care. We have no idea what the average wait for diagnosis is, and therefore there are no target times.

From the unofficial data that is collected, it seems that we are likely encountering a vast postcode lottery that is unfairly dictating the speed of a diagnosis and the support available. Just take the comment of Sian on Facebook. Her son in Wigan has received excellent care, which she described as “life changing”. However, she teaches in a neighbouring constituency where children are waiting more than a year for diagnosis and encounter a far more confusing process. Without the diagnosis data, we have no way of either assessing the effectiveness of the current diagnosis process or identifying areas of good practice. That data must be collected before we can begin to assess our treatment strategies.

The third way we are letting people down is through the lack of an integrated support strategy for those with ADHD. By looking at each impact of ADHD in isolation—at just the medical impact, just the impact in educational settings, or just the behavioural impact and the social implications of the condition—we, as a society, are failing to offer the whole-system approach to ADHD, and to mental health more generally, that is needed. Tackling ADHD should be about transforming lives; not just responding to symptoms, but working to unlock the full potential of the incredibly creative minds that those with the condition possess.

The current approach to ADHD is not fit for purpose. Too many are falling through the net; too many are still waiting for a diagnosis after years on a waiting list; too many are without the right support; and too many are living undiagnosed with a condition that can have a severe impact on their daily life. I introduced today’s debate because of stories such as Becky’s, Sam’s, Hugh’s, Sarah’s, Claire’s, and the countless others who got in contact with me out of desperation, and who I know will be watching today.

What changes do we need? First, there needs to be more research. A recent Demos report highlighted that ADHD is under-researched, particularly its social and economic impacts. There also needs to be research into the difference made by early access to diagnosis and treatment to the long-term outcomes and costs of people with ADHD.

Secondly, the NHS and the Department of Health and Social Care need to collect data on waiting times. As we have seen, there is a vast postcode lottery across the country that determines the speed of diagnosis and the level of support. The system is grossly unfair and is reducing the life chances of people, based purely on where they live.

Thirdly, we need a streamlined and integrated approach to the support process we offer to children and adults with ADHD. As I have mentioned, those living with the condition are no less able but are often not suited to traditional methods of learning. We must implement a strategy that diagnoses an individual with ADHD speedily and then, crucially, signposts and tracks that individual through a system that promotes educational or employment opportunities suited to their skill set. More broadly, that means that as a society we must be unafraid to promote the untraditional or unconventional routes to success, to promote the creative industries, and to destroy the social stigma that too often forces individuals down the academic route.

In my own borough of Wigan, we have seen the beginnings of such an approach. The local clinical commissioning group has implemented a new joint mental health strategy that is designed to facilitate the seamless interaction of healthcare professionals with support services and education providers. The early signs are promising. Already we have seen the average local wait down from 15 weeks to six weeks, which will help numerous local young people to thrive. However, there is still a long way to go. The strategy addresses ADHD only in children and its implementation is too recent to see the long-term local impact. The local nature of the strategy also highlights yet again the importance of a national framework to achieve equality of provision across the country.

[Bambos Charalambous]

Is my hon. Friend aware of the Government’s mental health Green Paper? Does it contain anything of substance in relation to ADHD? Is there any strategy? If it does not, does she think it should?

[Jo Platt]

The Green Paper is a step in the right direction, but it does not go nearly far enough to confront the enormous scale of the challenges we face. In the case of ADHD, it is important to remember that the condition is neuro-developmental and not a mental health issue.

I have a final ask of the Minister: I invite her to a meeting of the APPG to listen to some of the experiences of people with the condition and to understand the barriers they face. ADHD is highly treatable and is, in many ways, a great asset, but only if it harnessed correctly. I hope that in this Mental Health Awareness Week we can commit to the beginning of a fundamental transformation in our approach to ADHD. No longer can people be waiting years, if not decades, for diagnosis; no longer can social stigma form a barrier against success; and no longer can we leave such enormous talent locked, restricted and hidden away in society. Now is the time to act. I hope that we will see from the Government the strategy and the leadership needed to support those with ADHD and break down the barriers to success that thousands across the country face today.

16:33

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

I congratulate the hon. Member for Leigh (Jo Platt) not just on the passionate and articulate way in which she has introduced this important subject, but also on setting up the all-party parliamentary group. I am delighted to accept her invitation to come to a meeting and to hear some of the stories. I would also, through her, extend my congratulations to Michelle Beckett for her work in raising awareness.

The hon. Lady has highlighted that this group of people face quite intense, if unconscious, discrimination, because the way that our education system is set up does not really address their needs. That is something we should all wish to tackle. There are similarities with the way that autism and conditions such as dyslexia were treated in the past. If the abilities to learn are not there, people can fall out of the system. The truth is that they have a very different skill set and we should all be endeavouring to draw that out and, at the very least, not make them feel marginalised or discriminated against. As we have heard from other hon. Members, it is that sort of discrimination that leads them to fall out of the mainstream and perhaps fall into the criminal justice system, which is something that could easily be avoided if we were all more sensitive to it.

The hon. Lady mentioned data. I will take that away and look at it. It is fair to say that it is only very recently that the NHS has started to collect data regarding autism, for exactly the reasons highlighted today—the postcode lottery in terms of how different areas treat the condition. Quite often, it depends on having somebody in the area who gives a damn to give some leadership on the issue. Clearly, that is not good enough, as it will fail far too many people. I will go away and look at that. We have just introduced a new dataset for autism and I do not see any reason why we cannot extrapolate that methodology to look at ADHD. There is no doubt that we will continue our dialogue on these issues.

[Dr Poulter]

The Minister is absolutely right to highlight the issue of data, or the lack of it. In the interests of parity of esteem, is it also worth looking at introducing access targets in mental health for access to child and adolescent mental health services, which do a lot of the assessment of people with ADHD? Would that help drive better data collection in the NHS? Measuring against a target forces local healthcare providers to collect the data that is necessary to drive improvements.

[Jackie Doyle-Price]

I am just about to come on to issues about waiting times. The methodology that my hon. Friend suggests is absolutely right. Although it is Mental Health Awareness Week and we are looking at the issue through that prism, this is not just about mental health; it is about a learning disorder, and goes beyond that. Compartmentalising people who fall out of the mainstream as those with mental health issues is equally discriminatory, but we do have to ensure that we have the right care pathways for them to meet their needs.

[Dr Poulter]

I did not intend to come across as discriminatory in the point that I made; it is CAMHS professionals—mental health professionals—who tend to do the assessments for ADHD in children. What is the Minister going to do about the recruitment crisis in CAMHS? Without those CAMHS professionals, we shall not be able to provide the diagnosis and delivery of care.

[Jackie Doyle-Price]

My hon. Friend will be aware that we have addressed those issues in the Green Paper. We are investing in a whole new workforce in support of CAMHS, which will have a direct relationship with schools, where it will be possible for a lot of the wraparound help to take place.

I would like to make some progress on the specifics of ADHD and move on from CAMHS. The hon. Member for Leigh highlighted the massive variation in services across the country. I fully acknowledge that there are long delays for some to see a specialist and secure a diagnosis. That will clearly have a negative impact on those living with ADHD and their families, who can also find the experience confusing.

We are determined to see improvements in the patient journey. There are NICE guidelines. The earlier the diagnosis the better, and the better the chance of getting the right support and better outcomes for the individual. The NICE guidelines were published in 2016 and set out the process for managing ADHD for people aged three years and above. The guidelines aim to improve the diagnosis of ADHD, as well as the quality of care and support for people with an ADHD diagnosis.

An updated guideline was published in March this year, which particularly addresses under-diagnosis and misdiagnosis of ADHD in girls. People think it is just about behaviour, but in girls it does not play out in exactly that way; there is a lot to be done in education on exactly what this condition is. As the hon. Lady said, people think it is about bad parenting or bad behaviour when it is much more complex. The guidelines advise practitioners to be alert in such circumstances to the possibility of ADHD. We will be failing girls if we do not raise awareness of how that might be playing out.

The guidelines also recommend that people with ADHD would benefit from improved organisation of care and better integration of child health services, CAMHS and adult mental health services. Although NICE clinical guidelines are not mandatory, we expect health and care professionals and commissioners to take them into account fully as they design and put in place services to meet the needs of their local populations. NICE has published a range of tools to help local areas put the guidance into practice, but that is clearly not happening everywhere. I always find that sunlight is the best disinfectant, so the more we can do to ensure transparency, the better. That is why data is so important, as the hon. Member for Leigh said.

The NICE guidelines do not at this time recommend a waiting time for seeing a specialist for diagnosis, but they do recommend that parents of children whose behaviour is suggestive of ADHD should be offered a referral to group-based ADHD-focused support without waiting for a formal diagnosis. That will clearly be helpful, but we should also look at the waiting times.

An issue that I am particularly concerned about—I look forward to engaging with the APPG on this—is support for schools, which the hon. Lady mentioned. Getting the right support package for children with ADHD can be challenging for some institutions. I am concerned that anecdotal evidence suggests that people are being excluded disproportionately, so we really need to tackle that discrimination. Perhaps I can ask the APPG what we can do together to give schools extra support and better advice about how to support children with this condition, rather than simply marginalise them.

The Children and Families Act 2014 and the special needs code of practice set out ways in which care services should join up, and we need to hold them to account. We expect CCGs and local authorities to work together to support children with special educational needs or disabilities, including ADHD. That includes co-ordinating assessments of individual needs and, for those with the greatest needs, providing an individual education, health and care plan. I am interested in hearing evidence from the APPG about how many children are not receiving such plans.

I am not going to stand here and pretend that everything is perfect, because I know perfectly well that it is not, but we have the opportunity to highlight good practice, help local authorities and CCGs to learn from it, and highlight when people are being failed.

[Martin Docherty-Hughes]

On best practice, I asked the hon. Member for Leigh (Jo Platt) about the Department for Work and Pensions’ workplace assessments. Will the Minister speak to her colleagues in the DWP about how effective they are for adults with ADHD in the workplace?

[Jackie Doyle-Price]

I will be happy to look into that in response to the hon. Gentleman’s question. The Government are trying to encourage as many people into work as possible, and we want to get an additional 1 million people with disabilities into work. Employers should treat people sensitively, and people with ADHD can be valuable members of the workforce. I will be happy to have a conversation with my colleagues in the DWP to encourage that. Those people have a skill set that can be extremely productive for enlightened employers who are prepared to make concessions and work with them effectively.

I acknowledge that data is an issue. Without robust and comparable data about waiting times, we do not have the tools with which to challenge local areas, but hon. Members can raise anecdotal evidence in advance of our being able to put together a suitable dataset. I have asked my officials to explore with NHS Digital what data can be made accessible via the mental health dataset. We also need to work alongside the Department for Education, because people with ADHD start manifesting issues in school.

A number of hon. Members said that it is important for employers to improve outcomes for people with ADHD. Unless we get people with ADHD into meaningful employment, there is a risk that they will fall into the criminal justice system, quite unnecessarily. Work is not just about earning a living; it contributes to people’s psychological wellbeing and gives them a sense of belonging, purpose, confidence and self-esteem. As I have said many, many times before, work is good for people’s health, so we need to ensure that nobody is excluded.

People with ADHD can be well skilled, highly qualified and employable individuals, with exceptional and unique talents, who can bring real benefits to businesses. I am more than happy to bang the drum to encourage more employers to be sensitive to people with ADHD, as they should for people with autism, who also have big skill sets that they can offer to employers.

I do not have much time left. I thank hon. Members for their contributions. This group of people has been poorly served for a very long time. I therefore welcome the establishment of the all-party group and I look forward to having ongoing dialogue with all its members. I hope that, before long, we can achieve some material differences and improved outcomes for all those people.

Question put and agreed to.