Westminster Hall debate on Attention Deficit Hyperactivity Disorder: Diagnosis - Feb 1

Esther McVey (Tatton) (Con)

I beg to move,

That this House has considered attention deficit hyperactivity disorder diagnosis waiting times.

It is pleasure to serve under your chairmanship, Ms Nokes, and an honour to open this debate to recognise the importance of early diagnosis of attention deficit hyperactivity disorder, and to draw attention to the current severe delay in the diagnosis of it.

An early diagnosis of ADHD will have a significant impact on an individual’s life: on their development, self-confidence and self-awareness, and their physical and mental wellbeing. For someone with ADHD, a diagnosis can help them understand why they are struggling with life. It allows them to understand their impulsivity, hyperactivity, inattention and sensitivity to the simplest distractions, even to everyday noises.

Instead of having a life in which they feel lost and alone, they can find and understand themselves, and gain a feeling of belonging and control. It is believed that one in 20 adults in the UK has ADHD, according to ADHD Foundation, but only 120,000 have had a formal diagnosis. The charity says that that is because of a combination of poor understanding of the condition, stigma and delays in diagnosis.

Diagnosis is essential, especially when there is an identifiable link between ADHD and suicide: one in 10 boys and one in four girls who have ADHD attempt to take their own life. Early diagnosis can prevent those tragedies and offer an answer to those suffering from the condition.

Today’s debate has come about because of the tenacity of a constituent of mine, Tanya Bardsley. She has been open about the amount of pain ADHD has caused her, her difficulty getting the condition diagnosed and, in particular, the added difficulty for girls and women in being diagnosed. She allowed herself to be filmed last year, and shared that in an ITV documentary, “Me and ADHD”.

Today, Tanya is a very accomplished woman. She runs four businesses, a charity and a household, as well as being a mum and a wife. But it took her almost 40 years to understand her anxiety, depression and impulsivity. In fact, it took her to almost six weeks before her 40th birthday to get diagnosed. Tanya described her ADHD as like having

“17 TVs on in your head. You can’t focus and there’s lots of noise in your head. You feel like you’re being smothered, overwhelmed, like you’re drowning in life. You’re living with this inner restlessness, which is exhausting and relentless.”

So much was that the case that, even before Tanya was 15 years of age, she had tried to take her own life three times. From the age of 18, Tanya was given antidepressants for depression and anxiety. Tanya saw more than 20 doctors, who just kept changing her prescription, but the medication never worked. It was not until she eventually went to see a private psychiatrist specialising in anxiety that she was diagnosed with ADHD. Once Tanya got her diagnosis, she said,

“Finally, I know what’s wrong with me. After years of struggling and on loads of different medications, it now all just makes sense. To be honest with you, I have never felt better.”

Tanya’s diagnosis was very late and that is why she made it her mission, along with others, to ensure that ADHD is diagnosed much earlier in life, in early years of education.

ADHD was first mentioned in 1902, when a British paediatrician, Sir George Frederic Still, found that some children were affected but that they could not control their behaviour in the way that a typical child could. He also noted that it was not because they were not intelligent; it was because they could not control themselves. Over the past century, the understanding of ADHD has increased, as have diagnosis and treatments. It is defined as

“an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.”

In 2000, three sub-types of ADHD were recognised and are now used by healthcare professionals: combined type ADHD; predominantly inattentive type ADHD; and predominantly hyperactive-impulsive type ADHD. Six or more symptoms of inattention need to be proved for children up to the age of 16, and five or more for adolescents aged 17 or over and adults. Symptoms of inattention have to have been present for at least six months and have to be inappropriate to the person’s development level—for example, often failing to pay close attention to detail; carelessness with homework, work or other activities; having trouble sustaining attention during tasks or play; often seeming not to listen when spoken to directly; often not following through on instructions; failing to finish chores or homework; and having trouble organising tasks and activities.

Jim Shannon (Strangford) (DUP)

I thank the right hon. Lady for bringing the matter forward. I deal with this in my office every week of my life, so I am aware of the issue.

In Northern Ireland, which I know is not the Minister’s responsibility, there is going to be a gap of £110 million in the budget. This is my point to the right hon. Lady: the first sacrifice is often special needs provision, the cutting of which cannot be acceptable because it presents a risk to children who simply need a little extra help at an early stage in life. The risk is that a different way of doing things will be overlooked and the children will be abandoned at the most vulnerable point in their education. The right hon. Lady has said, “Get the diagnosis early,” and I agree with her. Does she agree that the Minister needs to respond positively?

Esther McVey

I do indeed, and I believe the Minister will respond positively. As well as early diagnosis in respect of inattention, which the hon. Gentleman and I are saying is important, hyperactivity and impulsivity also need to be seen and recognised.

The criterion is six or more symptoms of hyperactivity or impulsivity for children up to the age of 16, and five or more for adolescents aged 17 or over and adults. Those symptoms have to have been present for at least six months to the extent that they are causing disruption and are inappropriate to the person’s development level. That means a person fidgets, taps hands or feet, squirms on a seat, often leaves a seat in situations in which remaining on the seat would have been expected, often runs or climbs in situations where that is not appropriate, is often unable to play or take part in leisure activities quietly, is often “on the go” and “driven by a motor”, and talks excessively.

In addition, the following conditions must be met: several inattention or hyperactive-impulse systems were present before the age of 12; several symptoms are present in two or more settings, whether that be the home, school or work, with friends or relatives, or during other activities; there is clear evidence that the symptoms interfere with, or reduce the quality of, social, school or work functioning; and the symptoms are not better explained by a different mental disorder.

Quite strict conditions must be met, and we know what the symptoms are. As the hon. Member for Strangford (Jim Shannon) said, there needs to be an early diagnosis. Indeed, the stipulation is that the symptoms have to have been present before the age of 12, so we need that early diagnosis. To enable early diagnosis for a child, there needs to be a clear pathway for referrals from the school or GP to the specialist, but that is not working swiftly enough, although it is essential. The number of people in the UK affected by ADHD is 2.6 million, according to the ADHD UK website. Of those, 708,000 are children and 1.9 million are adults. More than 117,000 individuals receive a prescription for ADHD medicine.

I note that in the papers only this week, concerns were expressed by some in the scientific and medical profession about overdiagnosis, as parents and individuals go online to self-diagnose, but I would say that self-diagnosis possibly came about because people have not been able to see a GP or a specialist and they have gone online. Yes, there could be overdiagnosis, but the bigger concerns are underdiagnosis of those who need a diagnosis, and securing rapid access to a professional to establish what they have and what treatment they need.

I note, too, that the journey for girls and the outward signs for them are very different from those for boys. As such, ADHD tends to be picked up in boys and not so much in girls. The symptoms for boys are more well known. Boys display a sort of naughtiness—a disruptive way of acting, being the class joker or trying to disrupt others. That gets them noticed. However, the symptoms for women and girls do not involve being naughty; rather, they seem more as though they are “away with the fairies” or distracted. Because their behaviour is non-disruptive, they do not get the attention they deserve and therefore remain untreated.

ADHD impacts the lives of those living with it very differently, and they all cope with it differently. However, its impact is significant. Adults with ADHD are five times more likely to try to take their own lives than those without it. That is a tragedy in and of itself, and why a diagnosis needs to be made. Given the impact of ADHD on people’s lives, Tanya and many others are calling for early diagnosis. Tanya was diagnosed when she went private, a luxury that most of my constituents cannot afford. The process usually involves a 60 to 90-minute consultation with a psychiatrist. There is not a scan or diagnostic test as such; people need to meet somebody who can look at their condition.

However, even if a referral is made by a professional, people risk being screened out. Thanks to ADHD UK, I have some local data on the screening out of referrals from the Cheshire area. The reason could be that, because screening is not part of the National Institute for Health and Care Excellence guidelines, people are blocked from receiving an assessment. However, blocking people from an assessment, despite a qualified referral, does not make sense. As we know, it will stop people getting the care they need. In the last three years, 84% of girls put forward for assessment in one part of Cheshire were removed following a local health authority assessment, despite girls being known to be under-diagnosed and despite the higher suicide risks for young girls. To obtain that information, ADHD UK had to submit a freedom of information request to each integrated care board. That is how we found out.

The problem is significant, it is sizeable and it needs to be sorted out, so these are my questions for the Minister. First, will she meet me and my constituent Tanya Bardsley to discuss ADHD and what steps the Government can take to ensure earlier diagnosis? Secondly, will the Government start collecting national data, as is the case for autism, and introduce an ADHD wait list dashboard, as there also is for autism? I thank the Minister for her time today and ADHD UK for all its hard work in getting this data about Cheshire to me and, of course, to Tanya Bardsley.

11.13am
The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)

It is a pleasure to serve under your chairmanship, Ms Nokes. I thank my right hon. Friend the Member for Tatton (Esther McVey) for securing this important debate. I believe there are two more debates on this issue next week in this Chamber, so she is leading the way in securing this debate, as a starter for that further consideration.

This is a really important issue. We know that people with ADHD have positive traits, strengths and abilities, such as creativity, resilience and the ability to hyper-focus. My right hon. Friend referred to her constituent Tanya Bardsley, who has shown that people with ADHD can be extremely successful, but there are also challenges, as she clearly set out, in living with ADHD and in getting a diagnosis, which is often necessary for people to get the support they need. I am not going to pretend that there is not a problem with accessing assessments at the moment. Many of my constituents also come to see me about that, and many have to go private to get a diagnosis. I fully acknowledge that that is not acceptable.

NICE, which provides the evidence-based guidance, says that commissioners and providers should have due regard for the evidence base when designing and commissioning services. However, my right hon. Friend highlighted a number of key issues that hamper how patients and their families access services. NICE does not actually recommend a maximum waiting time for a diagnosis, so there is no benchmark or gold standard to measure services against. That means that services sometimes struggle to meet what we would consider an acceptable waiting time for assessment. NICE sets out considerations about who should make a diagnosis and the criteria for diagnosis, but the long waits are due to the fact that there is no benchmark for the maximum waiting time.

The second issue that my right hon. Friend highlighted is a national dataset for ADHD assessment waiting times. There is no national collection of data and I note that she said that charities have gone to each ICB for data. In a way, it is encouraging that that data is there, but we need to pull it together nationally so that we have oversight and, as she put it, a waiting list dashboard that we can see. That would be useful not only to see what is happening in terms of best practice but to identify any gaps in certain parts of the country that may have longer waiting times than others.

I am certainly happy to pledge to my right hon. Friend that I will look at that. We are doing so much work in this area at the moment. For decades, mental health services, including neurodiversity services, have been the Cinderella service in health, with physical health much more predominant. We are making the change now to achieve parity of esteem between the two services, but there is a lot of work to do to catch up, and having the data to be able to measure waiting times and standards is a key part of that.

As my right hon. Friend set out, diagnosing ADHD is challenging, because there is no definitive test for it. There are a number of indicators that could suggest an assessment is needed, but someone needs to be seen for that to happen. ADHD often exists in conjunction with other conditions, whose symptoms can overlap and mask those of ADHD. The NICE guidelines aim to improve the diagnosis of ADHD, as well as the quality of care and support that people with ADHD receive.

The NICE guidelines also recognise that ADHD is under-diagnosed in women and girls, and that the indicators are very different. In my work in mental health, we see the consequences of that in young women and girls being admitted to mental health in-patient facilities and having a higher rate of suicide. My right hon. Friend is absolutely correct in what she says.

There are a number of ways in which we are trying to improve access to assessment and diagnosis. Many children and young people seek diagnosis through child and adolescent mental health services, but there are pressures on those services too. We are providing funding to increase access; in the last financial year, £79 million was allocated, which allowed 22,500 more children and young people to access mental health services. As my right hon. Friend eloquently said, it is vital that a person gets a diagnosis as early as possible in their life, so that they get support as soon as possible.

We know that children with ADHD and other neurodiverse conditions such as autism can thrive in and out of school if they get the support they need. We have a trial under way in Bradford looking at an early diagnosis tool to help teachers, parents and others to identify the needs of those with neurodiverse conditions. If successful, that could be expanded across the country. I will update Members as soon as we have the results of the pilot, because we are keen to see improvements in attendance, behaviour and educational outcomes in schools, as well as in the quality of life experienced by children and their parents. The tool is not intended to replace clinical diagnosis, but it should enable support to be made available earlier to children and their parents while they wait for an assessment and a diagnosis.

We also have the special educational needs and disabilities Green Paper, which sets out proposals to improve the outcomes of children and young people with SEND, including those with ADHD, and we will publish a full response to the Green Paper in an improvement plan imminently. Hopefully, my right hon. Friend will feel that that addresses some of the issues that she has raised today.

One of the best forms of practical support that I have seen is the mental health support teams that are now being placed in schools. There are currently 287, which support 4,700 schools, or around 26% of pupils. That figure will increase to 35% of pupils in April. The teams support teachers to identify children who may have ADHD, other neurodiverse conditions or mental health issues, and get them signposted and into the system much quicker. The service is making a real difference on the ground, and we are keen to expand it as quickly as possible. As my right hon. Friend said, children and young people with ADHD suffer higher rates of anxiety—nearly 50% higher than the general population—which is why we need to get that support in as quickly and easily as possible.

I acknowledge that we are not where we want to be with support for ADHD, whether on diagnosis, support or access to assessments. When we respond to the Green Paper, we will hopefully show that we are serious about changing that and making support more easily available. The Bradford pilot will hopefully improve access to services, but the key is getting the data. I commit today to look at the data on waiting times and at a dashboard, because we cannot plan services if we do not know how many people are waiting for an assessment and an ADHD diagnosis. I completely acknowledge that point.

I am happy to meet my right hon. Friend’s constituent Tanya Bardsley. She sounds like an amazing woman—experts by experience are very valuable indeed. I know that there is more to do to improve access to ADHD assessments, but I hope that I have reassured my right hon. Friend that we take the issue seriously.

Question put and agreed to.