ADHD Diagnosis and Treatment

Jo Platt Excerpts

Tuesday 15th May 2018 Westminster Hall

[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?

--- Later in debate ---

[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.

Hormone Pregnancy Tests

Jo Platt Excerpts

Thursday 16th November 2017 Commons Chamber

[Steve Brine]

My hon. Friend is right to speak up for his constituent. At the risk of repeating myself, the patient voice was present throughout, and the members of the expert working group were deeply moved by the experiences of the families involved. However, the conclusions do not take away from the real suffering of the families and nothing can. Nothing can turn the clock back. Ministers are confident in both the report and the review process, and we now have to implement the recommendations.

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

I have been contacted by my constituent Adele, whose mother has suffered immense guilt over the loss of a child, which she now believes to be related to the Primodos hormone pregnancy test. To add further upset, when victims were brought to the inquiry, they were given only half a day to be interviewed. I implore the Minister to listen to individual cases, such as the one I describe, and to explain what steps the Government will take to ensure that the women get the answers they so desperately seek.

[Steve Brine]

The step that we will take is to implement the report’s recommendations. As I have already said, the way the families were handled when they came down to speak to the expert working group could have been a lot better, which is the understatement of the day, and I apologise for that on behalf of the MHRA.

Social Care

Jo Platt Excerpts

Wednesday 25th October 2017 Commons Chamber

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

Thank you, Madam Deputy Speaker, for allowing me to speak in this important debate.

As I am Member of Parliament for the borough with the largest ageing population in Greater Manchester, social care provision is an extremely serious matter for my constituents. Consequently, social care funding accounts for almost a third of the total spend by Wigan Council. However, hit by local authority budget cuts, there will be an overall reduction in social care funding of £26 million over the next three years. When factoring in the increased demand on social care, the local authority’s black hole rises to £40 million. These funding cuts have been met by the local authority largely through efficiency and transformational programmes to reduce costs while maintaining and, in some cases, improving standards. However, the Government’s proposed supported housing cap, the universal credit roll-out and the living wage obligation all limit severely the services that local authorities can provide.

What we have seen from this Government is an attack from all angles on local authorities, leaving them simply unable to meet their care obligations. The future for local authority funding looks even bleaker. The Government have so far failed to set out a long-term social care strategy, or explain how they intend to fund local authority provision after 2020. This leaves constituents deeply concerned about the care they will receive, and local authorities unable to find any further savings to protect their core service provision. As the ageing population begins to require care services just as budgets are so ruthlessly slashed, the opportunity to realise further reductions in costs diminishes.

Local authorities are rightly very concerned that even the threat of restricted care funding will deter third sector organisations from investing in services. When factoring in the Government’s flawed introduction of their living wage, it is unsurprising that in my constituency planned projects have been cancelled and care provision reduced, resulting in dangerous levels of excess demand in the local care sector. Where does that leave people and who can they turn to? It will force them either to rely on their remaining savings and their family to meet their care needs, or to put the burden on the NHS, with patients who require social care provision sitting in hospital wards instead. Not only are patients not receiving the correct care they require, but this is an enormous drain on already stretched NHS resources.

That brings me to my final point on this vicious circle: the delayed transfer of care. Is it any wonder, when local authorities face budget cuts, that third sector organisations are pulling out of the care sector, the demand for care services is greater than ever, and delayed transfer of care is rising at a rate of 25% per year, costing the NHS £173 million in the last year alone? The social care crisis will continue to grow until the Government propose a fair, comprehensive and long-term funding strategy. This strategy cannot include cuts to local authority budgets or any additional pressures on the NHS, and, most importantly, it cannot risk draining social care patients of their life savings, as the Prime Minister proposed during the general election campaign. I hope that after this debate the Government will realise the extent of the pressure their policies are putting on local authorities, care providers and the NHS, and introduce a national and fully integrated care service that puts social care patients first, and fairly funds the care sector for the future.

Surgical Mesh Implants

Jo Platt Excerpts

Wednesday 18th October 2017 Westminster Hall

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

First, I congratulate my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) on securing this important debate. I also pay tribute to the incredible work of my hon. Friend the Member for Pontypridd (Owen Smith), whose campaign has ensured that those women affected by mesh implants have a voice and are being listened to. They may receive some reassurance from the fact that we are debating the issue today.

I have a constituent who is suffering from the consequences of a failed mesh implant. She met me recently and explained the debilitating and life-changing effects it is having on her quality of life. She told me of her experiences of the failed procedure, which left her barely able to walk, and bedridden for three months. She spoke of the pressure that put on her family, with her children left to care for her and her husband unable to work overtime due to childcare commitments. It has prevented her children from having friends over, stopped family holidays and left her disconnected from her community, being unable to walk or drive without excruciating pain. The financial burden and personal impact on her family has been immense. She described the effect on her mental health. She has uncontrollable mood swings, angry outbursts and frustration at not being able to care for her young family. She now faces many more procedures and many more months of pain before she can even dare to think about her future.

There are many more women like my constituent, as we have heard today, and I pay tribute to the bravery of these women who have come forward to demand that they be heard and that their stories are told and acted upon; but these are the women we know about. Alarmingly, many are not aware that post-operative issues may be a direct result of the implants. The worrying narrative emerging is that many women who have had the implants and have since experienced problems are only now finding out about the complications that mesh can cause. Women who have had the procedure should be contacted directly and made aware of the issues we are debating here today.

Women who have suffered such debilitating effects deserve a full inquiry to determine how it could have happened and what steps will be taken to ensure such a situation never happens again. I therefore agree with the APPG’s recommendation to suspend the procedures pending a NICE guideline review to protect the health and wellbeing of more women.

I hope this debate will ensure that the Government listen to the women affected by the implants. I hope they will confirm their commitment to investigate the situation fully and take urgent action to prevent other women going through some of the horrific ordeals we have heard about today.

Autism Diagnosis

Jo Platt Excerpts

Wednesday 13th September 2017 Westminster Hall

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

I thank my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) for bringing this important debate here today. Like many others, I have many constituents who have contacted me and highlighted the effect that delays in diagnosis can have. The process is often a long and confusing experience for the child and a source of great stress for parents, carers and family members. My work with children and young people during my previous role within the local authority has given me a really good understanding and great insight into the huge gaps that children and families face. Delays in obtaining diagnosis vary widely from child to child and from area to area.

As others have done, I will read out a statement from a constituent; she has two autistic children. Debates such as this are for hearing directly from those affected. This is Katy, who said:

“My first child had a reasonably short period of assessment lasting 12 months, but my youngest son is just beginning the process and we have been advised that it could take up to three years. As he is nearly three, he would be expected to go onto a school place and as such could potentially struggle and fall behind.”

They will not get access to an education, health and care plan, and

“he will not be accepted into a SEN school without this diagnosis.”

How is it right for her and her son to go through the agony of not receiving appropriate care due to the assessment process? That process has a huge impact on children being able to access the schooling environment and support they need.

[Mike Amesbury]

I want to illustrate this. A constituent has a son, Sam, who is seven years of age. They have been waiting a considerable length of time—months and months—and no longer know what to do or how long to wait. They came to me in frustration. With no diagnosis, there is no EHCP, which means no provision, as hon. Members from across the Chamber have said. They must battle on and on.

[Jo Platt]

That is exactly the point that we have all been raising. As mentioned by many here, people have gone through their entire lives without being diagnosed. In some cases, that does not present a real issue, but for others it presents decades of being misunderstood and misdiagnosed with other conditions.

Dawn is another woman in my constituency. She had spent all of her life being treated differently and feeling ill at ease with all that went on around her. This year, she was diagnosed with autism at the age of 46. She said to me that now that she understands her condition, the world makes sense. Dawn and many like her are determined to make a difference. She is exploring ways in which she can help and support other adults in the same situation and to advocate for better understanding of the condition. I applaud Wigan Council, because it understands the gaps and wants to bridge communities, businesses and other public services to create that better understanding for people affected.

I urge the Minister to ensure that the process of diagnosing and supporting people with autism is consistent across the country, with that process informing and supporting all public services and the wider community, and that the latest recommendations and resources are allocated at the earliest opportunity to support the individual’s needs and promote better outcomes for all.

[Several hon. Members rose—]