Radio 5 live interview – Listern Here, Tuesday 25.8.20

Introduction: Dr Read has worked for over 30 years as an NHS psychiatrist. She was a Consultant psychiatrist for many years prior to leaving NHS in May 2020. She has specialised in psychotherapy, treatment of personality disorders, womens’ mental health, forensic services, eating disorders and learning difficulty as well as lots of general adult psychiatry in both inpatient and community settings. From 2015-2020 she was the trust lead for ADHD for a large London mental health trust.

She also has three sons, two of whom are diagnosed with ADHD and ASD, so knows what it’s like to navigate health and education systems which for children or adults with neurodevelopmental issues, , and this experience has shaped her understanding and treatment of these conditions.

She has very recently been diagnosed herself, privately, after spending two years on an NHS waiting list.

Impacts ADHD has on life.

We used to think ADHD was a childhood disorder, we now know that up to 2/3 of children with ADHD become adults with ADHD. We also know that many adults remain un- or mis-diagnosed. Research estimates that across the world around 3.4% of adults, and around 5% of children have ADHD. More males are diagnosed than females, although many think this is because the diagnostic criteria used do not include emotional/sleep symptoms which for many can be the most common and troubling symptoms.

A large population survey completed in 2014 identified around one in ten adults in the UK as having sufficient ADHD characteristics to warrant a clinical assessment for ADHD, but only a small proportion of those screening positive had ever been diagnosed with ADHD (2.3%), and even fewer (0.5%) were currently taking medications indicated for ADHD

Research consistently shows that outcomes are massively poorer if ADHD is not diagnosed and treated as early as possible. For our children and for us, the potential implications of untreated ADHD over a lifetime can affect self-esteem, mood, school and academic achievement, substance use, crime and offending, impulsive sexual behaviour, family and relationships, occupational status, job performance, and traffic accidents.

Children with undiagnosed or untreated ADHD struggle in the classroom. As they get older many give up, don’t achieve potential, and leave school with prospects and self-confidence shattered. Teenagers with undiagnosed/untreated ADHD are 100% more likely to turn to drug and alcohol use; once treated the risk is the same as for any other curious adolescent. Young adults with unmedicated ADHD have a 17% risk of contracting an STD, and a 38% risk of unwanted pregnancy, compared with 4% of those without ADHD. Adults with unmedicated ADHD are 78% more likely to be addicted to tobacco, and 58% more likely to use illegal drugs than those without ADHD. In terms of mental health, 79% of adults with ADHD who were not treated as children, experience anxiety, depression, and physical health problems, compared with 51% of adults without ADHD.

The serious impact of failing to treat ADHD continues throughout adulthood. Untreated ADHD interferes with personal and family relationships, job success and satisfaction, and puts marriages at risk. Those with untreated ADHD are twice as likely to divorce as their treated or typical peers. There is also a huge connection with undiagnosed or untreated ADHD and unemployment. Many of my patients were unable to keep a job for a variety of factors, from lateness through problems understanding processes, productivity issues…to recurrently falling foul of office politics or struggling with being told what to do by bosses.

The epidemic of traffic fatalities has also been linked to untreated ADHD. Children with untreated ADHD are thought to be more likely to run into roads impulsively. Untreated ADHD affects driving, and car accidents are the leading cause of death among young adults. Young drivers with untreated ADHD have two to four times as many crashes as their peers without ADHD Overall, having ADHD increased a man’s risk of a traffic crash by 47 percent and a woman’s risk by 45 percent, the researchers found, although this is greatly reduced by taking ADHD medi cation

When we consider that ADHD is massively more treatable than any other mental condition, and generally far more cheaply, we can see that each one of these failures or worse outcomes is a tragedy, not just for the person and their loved ones, but also for society as a whole. As professionals and policy makers as well as individuals, we bear a heavy responsibility to listen to the overwhelming evidence that we are getting it very badly wrong.

How ADHD is misrepresented

If you talk to people, read papers or look on social media the general perception of ADHD seems to be usually either that it doesn’t exist, or it applies to naughty boys smashing classrooms. Many, many voices are raised on TV, radio and social media deriding any suggestion that ADHD can present in any other way, in girls or women, or bright, successful people for example, and I hear of many examples of doctors, teachers and other professionals still saying this.

We often see articles/comments lamenting overdiagnosis/overtreatment of ADHD, however if we look at the evidence, in fact it is clear that in UK, ADHD is still massively underdiagnosed, undertreated, or not treated with the most effective medications. And the tragedy is that it is an incredibly treatable condition.

Equally society’s perception that we use dangerous and addictive medication in ADHD and so it should not be given, or only given as a last resort is everywhere and unfortunately for patients, many doctors, teachers and other professionals still share the same view, and deny children and adults safe, life changing and effective treatment.

There is a very common myth that ADHD medication will lead young people into substance misuse or dependence. Studies have found no evidence of this, but there is plenty of evidence that if left untreated, adolescents with ADHD show a 100% increased risk of substance abuse. The sequence generally begins with tobacco and alcohol, turns to cannabis, then moves to cocaine, and can change quickly from use to abuse. Of course, adolescents who are taking medication for their ADHD are not immune to substance use. However, research shows that treated teens become no different from their typical peers; in other words, they behave like other curious adolescents. These teens may or may not experiment with drugs, but if they do, they are not doing it to meet a neurobiological need.

How ADHD is misdiagnosed:

When I was at medical school in the 1980s, I hardly recall any mention of ADHD in the undergraduate curriculum. Even during specialist training as a psychiatrist, unless you were specialising in children or people with learning disabilities, there was very little mention of ADHD. For a condition which we know affects around 3.4% of the adult population, and 5% of children, this seems very odd.

My heart used to sink when I heard colleagues proudly describing how they sent a patient away, probably after a minimum 2 year wait for an ADHD appointment, because they weren’t late, or weren’t fidgeting in the waiting room. I have heard many horror stories of GPs point blank refuse to refer patients if they have GCSEs or can hold down a job.

Asking medical, psychology, nursing, teaching, social work colleagues across the caring professions, it seems that this was and is typical.  This is why we have a situation where unless they have sought specialist training, or have personal experience of ADHD in themselves or their families, doctors, teachers and other professionals in charge of deciding who needs treatment, the people we trust to be experts, probably have a similar basic lack of knowledge and awareness of  ADHD and ADHD medication as the general public. How shocking…

Particularly affected demographics

So while almost everyone with ADHD except those who can afford to seek private help is disadvantaged by this, as always, some groups are definitely far more disadvantaged than others. The evidence suggests that women, high functioning people of all ages, and certain vulnerable populations such as mental health patients often face far greater difficulties getting ADHD diagnosed and treated.

Let’s talk about women. ADHD is known to be under-recognised in girls and women. Across the board, girls and women are less likely to be referred for assessment for ADHD, and more likely to be referred for anxiety, depression and emotional problems, which are often part of their ADHD. ADHD specialists are usually well aware that most if not all our patients have significant emotional problems, often around being very strongly sensitive to any kind of rejection or failure, and finding it very hard to process and recover afterwards. This is called rejection sensitive dysphoria in the ADHD world, although it is not an official diagnosis.

Because the official symptom list for ADHD diagnosis does not include emotional, mood or anxiety issues, patients going to GPs or psychiatrists with these symptoms, many of whom are women, will be diagnosed as having mood, personality or even bipolar disorders, when in fact these symptoms often related to their untreated ADHD. I believe that this is the main reason why women are underdiagnosed, and why we still think ADHD is less common in women.

Where there is underlying untreated ADHD, treatment for any other associated condition will generally be not effective, or less effective until the ADHD is treated. Having specialised in psychotherapy for many years, with a long interest in womens’ mental health and personality disorder, I can confidently say that looking back on many of the patients I encountered, I now believe that we could have changed their lives, and saved the NHS a great deal of money on ineffective treatment, if we had been able to look beneath the surface and see the ADHD.  What a wasted opportunity!!

Another group which generally doesn’t get recognised or diagnosed are the high functioning group. These children and adults learn to hide their ADHD very well. They may have learned strategies, and use rigid control, determination and working far harder than others to achieve, however ADHD still gets in the way.

So, we should be aware of different ways ADHD can present. Certainly in my general psychiatry clinic, while many people correctly identified ADHD symptoms, and so went on a 2 year waiting list to see me in the ADHD service, far more people would be referred for mood swings, or sleep or emotional difficulties. In fact once I became ADHD aware, my frontline NHS general adult psychiatry clinic effectively became a second ADHD service, with very positive results.

Because the attention problems may not be obvious, or can be swamped by emotional, mood or other difficulties, it is very important to be aware of more subtle signs which might indicate underlying ADHD such as psychological, behaviour or lifestyle problems.

Psychological signs include chronic low self-esteem, frustration and feelings of failure or not living up to one’s potential; feeling easily overwhelmed, especially when entering new stage of life (e.g. new job, having children); Mood fluctuations throughout the day (e.g. gets frustrated easily, loses temper and then behaves as if nothing has happened 5 minutes later)[; Recurrent depressive presentations that are unresponsive to treatment; Difficulty getting to sleep and complaining of daytime sleepiness or not being able to switch off

Behaviour/lifestyle signs include being disorganised, messy, forgetful – missing appointments, losing things. Chronic procrastination, frequent all nighters before deadlines, poor time management; starting things but getting easily distracted. People can show impulsive decision making, like spending that leads to debt, walking out of jobs, ending relationships; Frustration through chronic procrastination and / or distraction affects education, relationships and work. Many of my patients have struggled to complete further education degrees requiring re-sits and extra years, many also have difficulty maintaining stable employment through underachievement and / or conflict with colleagues, and of course quite understandably in the circumstances, may be drawn to alcohol or substances to relax or calm the mind, although this is never a positive choice.

So we need to look at emotional mood or productivity difficulties better and smarter, we need to see ADHD in say the workaholic driving themselves to exhaustion, the person who is so sensitive that the slightest criticism will send them spiralling; the alcoholic or drug user who uses to quiet their spinning mind or get some sleep.

I think we probably all know someone who seems so able, articulate and keen to please, “talks the talk”, but somehow gets distracted and can never quite deliver; someone who has to work twice as hard as everyone else to keep up; women who can’t manage to keep on top of the home no matter how hard they try; good people who desperately want to make the right choices but somehow can’t do it….and people who have collapsed into exhaustion and depression after many years of any or all of the above. These are general character descriptions, but I have many patients who fit each category in my clinic and so have been able to observe just how safe, effective and life changing diagnosis and treatment of ADHD can be.

ADHD is diagnosed far more in children than any other group but even children are often un- diagnosed or mis-diagnosed.  Despite being estimated to affect around 5% of children, ADHD in children is often not recognised, either by professionals or indeed the population in general. We are all familiar with the image of the hyperactive little boy smashing up his classroom, but what about the dreamy, inattentive little girl gazing out the window. And what about the disorganised student who can’t get started with revision or projects until the very last minute, and never achieves their potential.

Even if recognised, it is still very common for professionals to attribute all these symptoms to poor parenting or bad early experiences. ADHD does run in the family, and so it can often happen that one or both parents does have ADHD, however we know that parenting courses, family therapy and other routine interventions used in NHS child services, are unlikely to have much effect unless we first diagnose and treat the underlying ADHD.

I have many examples in my practice, and even recently when trying to get help for my own 8 year old son, where teachers regularly score disorganised, dreamy struggling children negatively for all these symptoms on ADHD assessment questionnaires if they think that parents are trying to label or medicate their children…and then punish or exclude the child for behaviour they can’t help. It is unusual to meet a doctor or professional with any understanding of what ADHD looks like in hardworking, high functioning children and adults.

Unfortunately, families too often find that years are lost through services making them jump through hoops such as parenting courses and family therapy, many languish for years on waiting lists, while their child’s mental health and educational potential deteriorate. My own son was refused an assessment by our local NHS CAMHS team; it took several months for them to send me a letter telling me this and suggesting I enrol on a parenting course. Quite apart from the fact that my GP had emphasised that I am a doctor and an expert in the field…quite how a parenting course was supposed to help my 8 year old son, who was at that time completely zoned out in the classroom is completely mind boggling.

Fortunately I was lucky enough to be able to access timely treatment elsewhere, and so my son is now fully engaged, doing well, learning, and is a totally different and far happier child who is coming on in leaps and bounds. He is one of the lucky ones. Across the country research shows that even if a referral is accepted, delays of nine months to five years from when a family may approach their GP to a child receiving a diagnosis by a specialist are not uncommon across the UK. I hear so many accounts of professionals asking parents “why do you want to label your child”, when even the smallest experience of actually having a child with these issues, the heartbreak of watching their intelligence stunted, their confidence blighted and their education and life chances ruined….by a common easily treatable condition should make us hang our heads in shame.

Even if parents manage to get a diagnosis, they then face huge pressure from the press, social media, other parents etc. not to consider medicating their child for ADHD. But when we think about risk, we need to remember the bigger picture. We shouldn’t just focus on whether it is risky to give a child medication. Every drug has its negative side effects and costs (one can overdose on anything). Instead, we need to ask, “What are the risks of not treating my child?” We need to consider the potentially huge implications of untreated ADHD not just at school but over a lifetime—on school and academic achievement, self-esteem and satisfaction, substance use, criminal and sexual behaviour, driving accidents, family and social relationships, marriage and divorce, job performance and occupational status. It’s far harder to find responsible and informed material which points this out, the press and social media seem to contain so much scare mongering. I have even heard accounts of professionals scaring parents with these views which are so, so wrong and cost our children so dearly. Additionally NHS services continue to prescribe treatment which can affect mood/emotions negatively, which means that people often cannot tolerate the treatments they are given, even if they are able to access them.

Make no mistake, the educational implications of untreated ADHD are profound. Studies show that up to 58% of children who were not medicated for their ADHD failed a grade in school. In one US study, 46% had been suspended from school. As many as 30% of adolescents with untreated ADHD fail to complete high school, compared with 10% of those without ADHD.

We should be seeing this as a national scandal which is not only costing large numbers of children and their families dearly, but is also massively wasteful in terms of society. And of course children from  lower income and more deprived families will be disproportionately affected as their parents are significantly less likely to have the confidence and finances to challenge professional advice, rise above accusations of poor parenting, and find the resources to access private treatment for their childrens’ difficulties. And why should they have to, for such a common and treatable condition?

ADHD is a very treatable condition, and yet without treatment many of these children will have disrupted childhoods, lost educational opportunities, lifelong mental health issues, poorer health, occupational and family outcomes, emotional problems and the persistent shame of never having achieved their potential. What a wasted opportunity!!

In terms of specific demographics or groups, we know that if you fall into certain categories you are far more likely to have ADHD. These categories are :-

  • People with a close family member diagnosed with ADHD
  • People with epilepsy
  • Adults with a mental health condition
  • People known to the Youth Justice System or Adult Criminal Justice System
  • Children in care or excluded from school
  • People with a history of substance misuse
  • People with neuro-developmental disorders – ASD, acquired brain injury

For anyone in these groups, my experience, and many research studies show that instead of the 3-5% general population risk, the risk of underlying ADHD and/or a related neurodevelopmental issue is around 20-30%.

This means that the NHS services who manage patients in these groups should be looking for underlying ADHD in 20-30% of their patients. Since this is absolutely not happening in any NHS service I know of (apologies if you run a service which does, please get in touch with me after) and since we know that not treating underlying ADHD dramatically reduces the chance of successful treatment of their other conditions, this means, sit down, take a deep breath, that we are wasting a hell of a lot of money….

So let me be clear. I am saying that potentially 25% of these vulnerable populations, including young people with learning or behaviour problems, particularly if excluded from school, young offenders,  prison population, people with mental health issues and substance misusers would appear to have an underlying condition which is easy to diagnose and highly treatable using a reasonably low cost medication. Treatment is highly effective in a very short time, and is not only hugely cheaper than many current treatment options, such as therapies, but could be expected significantly to improve outcomes from these programmes. What a wasted opportunity…

If we consider that the NHS in England’s budget for mental health in 2018/19 was £12.2 billion, roughly one in every ten pounds spent by the Department of Health and Social Care, we can fairly easily calculate that the NHS could potentially save around a quarter of that, or at least use it a lot better, if we had wider awareness and could identify and treat the ADHD first. If that isn’t enough, consider that in 2019/20 the budget for the Ministry of Justice was 8.05 billion pounds, with 4.56 billion for the prison service, and local authorities spent around £7.9 billion in 2017/18 on children in care.

Mindblowing as the potential numbers are, we must always remember that millions of human stories of unnecessary misery, wasted and lost opportunities and lost potential lie behind each missed diagnosis and ineffective treatment. What a criminal waste of opportunity, taxpayers money, professionals’ caring and hard work, but most of all what an avalanche of needlessly blighted and unhappy lives….

What solutions do we have to this?

On a personal level, I think that if you are someone who feels impelled to take to social media, or the school gates denouncing ADHD, or ADHD medication, I think you should stop and ask yourself whether you have ADHD yourself, know anyone with ADHD or actually have any personal evidence or experience which actually supports this…..

If you are a teacher, social worker, doctor, or a professional involved government policy, or running or commissioning services for any of these groups, I believe you need to take personal responsibility for increasing your knowledge and awareness of ADHD, and lobby your professional organisation for better training and increased awareness. We urgently need to ensure that training courses for doctors, teachers, youth workers, social workers etc do cover ADHD and reflect best understanding and evidence about ADHD diagnosis and treatment. We have to ensure that people who we think of as experts…..particularly our doctors and teachers actually have awareness and understanding of ADHD, and the huge benefits of identifying and treating people with ADHD, both for the individual, government and society.

You may well be thinking that that is easy for me to say…..of course I and many specialist professional colleagues see these truths every day in our patients, but can we really expect such a major shift in public, government and professional opinion and policy without lots of good evidence. Of course not. For this to happen, we will need evidence and to get evidence, we need to look for and collect outcomes. We still routinely do not collect ADHD statistics…

Changing the NHS diagnostic and treatment criteria would involve years of research, meetings, committees…..and such change while needed, will be a very slow and lumbering procedure. Even very high functioning people with ADHD tend to take a direct, pragmatic approach and often struggle with layers of bureaucracy, endless meetings and office politics, and so will generally be underrepresented in decision making bodies in large institutions. Personally, my NHS management career ended shortly after it started due to my inability to stay awake in boring meetings.

I believe that because the public sector is tied to these slow and cumbersome procedures, which by their nature will likely exclude many with personal experience of ADHD, it will move at such a snail’s pace, that we will see change more as a result of growing awareness and pressure as an increasingly internet savvy population become more aware and unwilling to accept current levels of misinformation, lack of awareness, under or mis diagnoses, psychiatric problems and the resultant avalanche of poor outcomes and needlessly blighted and unhappy lives either for themselves or their children and loved ones.

However there are signs of change. I have recently become involved with a fantastic project in the North of England, aiming to train GPs with a special interest to diagnose and treat ADHD in primary care. There are some really excellent GP and psychiatrists who want to make changes. There is some really excellent work being done by UKAAN, the body responsible for increasing awareness  of ADHD. A recent discussion paper points out that if we are to be able to see the numbers of people required to achieve change, we can’t continue with the situation where only a small number of very specialist doctors are considered able to diagnose ADHD in very isolated teams with long waiting lists. We need to move towards identifying and treating ADHD in primary care – ie GP surgery, and in the future most or all doctors should feel they have the skills to identify, diagnose and treat ADHD. So we do have some real progress, and some real good practice out there.

Recently I have seen very positive developments involving voluntary, third sector or independent organisations. A good example is Psychiatry UK- who I am affiliated with. They have worked tirelessly to help people use their “right to choose” to access timely, expert and affordable ADHD diagnosis and treatment. They are increasingly being recognised and commissioned to run local ADHD services in ways that are more efficient, faster, cheaper and hugely more acceptable to patients. We also have the fantastic ADHD Foundation, working tirelessly for awareness and policy change in Liverpool.

Another good example is a charity I’ve just become involved with called THE ADHD LIBERTY PROJECT. Its main aim is to keep ADHD adolescents and adults out of the criminal justice system, but also to campaign to make sure everybody inside prison is tested for ADHD, preferably while on the induction wing when they first enter prison. My experience is that 20-30% official figures for rates of ADHD in prisons cannot be relied on because the vast majority of people who are in there have no idea they have ADHD. All they know is that their risk-taking, thrillseeking, self medicating, dislike of authority and often undiagnosed dyslexia and related conditions, have led them to fail at school, lose the support of their families, and get involved with the police from a very young age.

My colleague Sarah from Headstuff ADHD Therapy worked with six clients in HMP Aylesbury for a year. Of those three had been diagnosed ADHD as children but were not on medication, two more were diagnosed with ADHD after she screened them. So 5 out of 6 young offenders had ADHD, only three had ever been diagnosed, and none of them had been on medication consistently as children or since. All five felt that not being diagnosed or treated earlier in their lives was the main factor which led to them being in prison.

I love the NHS, but very sadly, if it doesn’t wake up soon, it will continue to be left behind and function as a third class ghetto where only those who can’t afford effective treatments, mainly lower socioeconomic and other deprived groups of course, continue to languish undiagnosed, are misunderstood, misdiagnosed and given ineffective treatments and have very poor outcomes for a highly treatable condition.

We need to put to bed once and for all and completely and idea that we can’t afford to put money into ADHD. When we open our eyes to the evidence all around us,  and understand how much money and professional time is lost or wasted, the sheer cost of current levels of poor outcomes in terms of family and educational breakdown, accidents, crime, chronic mental health problems, lost and damaged futures, lost or shortened lives…..and sheer unnecessary misery we are causing by continuing to treat “everything but” ADHD, surely the question changes to “how can we afford to continue not to recognise and treat so much ADHD”

Thank you

Listern Here

Interview with Radio 5 live