ADHD Diagnosis and Treatment

Martin Docherty-Hughes Excerpts

Tuesday 15th May 2018 Westminster Hall

[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.

--- Later in debate ---

[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.