Art with Heart (with the backing of several organisations including the ADHD Foundation, The Granada Foundation, Essex County Council, Arts Council England–the full list is available via the link at the end of this post) presents Declaration, a curious, colourful and candid exploration of ADHD, mental health and diagnosis.
Declaration is a play that examines the faces we wear to fit in and what happens when we are forced to declare our differences. Developed in consultation with medical professionals, ADHD (Attention Deficit Hyperactive Disorder) and mental health support groups, Declaration challenges stereotypes with a curious, comic and candid look at ADHD, mental health and diagnosis in the 21st century.
Instinctive, curious, bold and bouncy, Sarah is a mighty proud square peg which wouldn’t be such a problem if the hole wasn’t so damn round. Her childhood Doctor thought it was sugar. Her current Doctor thinks its ADHD. Sarah still feels different, so what will a label do? Will it change the way you see her and the way she sees herself?
With autobiographical storytelling, comedy, and conversations with audiences, Declaration takes you on a vibrant and daring adventure that asks you to roll around in your weirdness, make a hat out of it and dance.
Declaration is currently on a Spring/Summer Tour and a list of the tour dates and venues with booking information as well as a trailer for Declaration is available from the Art with Heart e-flyer.
Here at AADD-UK we avidly followed the news about mental health issues during Mental Health Awareness Week. We admired the bravery of those telling their own stories, we retweeted some general mental health links instead of those that only dealt directly with ADHD, all the while preparing for our 10th Year Anniversary by revamping our website. Then suddenly we realised we’d forgotten the elephant in our own parlour! So we decided to write, just before the week ended, our own position for Mental Health Awareness Week.. Here it is:
First, we thanked the Mental Health Foundation for hosting the week, and thanked them for commissioning the survey and consequent report “Surviving or Thriving? The state of the UK’s mental health.” The authors of the report wrote that despite “many areas of advances in human health we are not seeing these reflected in mental health. If anything, the signs are that we are slipping back.” They backed this up by shockingly disclosing that only 13% of those surveyed in England, Scotland and Wales had “high positive mental health” and that nearly “two-thirds of people say that they have experienced a mental health problem” and others were clearly “just about surviving.”
The authors further reported that those of us living with either low household incomes or unemployment have worse mental health than those employed at higher incomes. 3 in 4 people at the lowest income level, 85% of unemployed people, 7 in every 10 women, 7 in every 10 young adults (aged 18-34), and 7 in 10 people living alone experienced poor mental health. Additionally, the authors quoted the “Mental Health and Wellbeing in England: Adult Psychiatric Morbidity Survey 2014” (published last year) which revealed that every week 1 in 6 adults experienced a “common mental health problem, such as anxiety or depression. 1 in 5 adults reported that they had considered taking their own life at some point.”
I sat in silence and reflected upon those numbers and felt an overwhelming sadness. So much unnoticed desperation and despair! Swiftly followed by anger; “Who can I blame?” “Where shall I point my finger?” You see, all this correlated almost exactly with our own experiences in the ADHD world.
It’s been almost 10 years since we set up AADD-UK with hope and optimism. During that 10 years, the National Institute for Health and Clinical Excellence (NICE) published ADHD Guidelines in which adults were included for the first time. Of course there was some initial resistance but over the years more and more professionals became interested, more and more moved into the field, more and more research confirmed ADHD as valid (even the usual tabloid suspects now, tentatively, report positive ADHD stories) and there are more ADHD services in the UK than the 3 that existed 10 years ago.
But all is not well! As awareness of ADHD grows, funding for ADHD services dwindles. Some GP’s, due to funding shortages, are reluctant to refer us to services. In truth, not all of the ADHD services have enough funding to meet the NICE Guidelines. It’s even been suggested, in one known circumstance, that the Guidelines be disregarded. A couple of services have surreptitiously tried to close. Some have decided not to publicise their contact details for fear they’ll get more referrals than allowed for by their funding. Of course, this means that waiting lists are getting longer and longer; even up to 2 years long! It’s true that gate keepers and sign posters cheerily point us to psychological therapies suggesting we use them while waiting. But guess what? Yep that’s right! We’re shuffled onto the end of another waiting list where some of us must try not to listen to whispers about the low quality of the offerings. So, there we are, stuck waiting, struggling to cope with abysmally low self-esteem, hurting, lonely, barely surviving. What does this matter when it’s said that ADHD makes us resilient, that we’re used to hard knocks, that we’re survivors? It matters because we understand too well that surviving is not thriving and that knowledge is painful!
And what about those of us who’ve been diagnosed and are taking medication? We’re all thriving right? Well not exactly. Medication is indeed all that some of us need. We can now concentrate as well as focus better. That helps us to, at last, move on and up. It helps us to feel relief as well as feel the joy of achievement. Some of us can even choose between seeing a consultant privately for follow-ups or waiting months to see the same consultant on the NHS. There’s a group of us too who, after a competent diagnosis of ADHD, don’t need any further help, not even medication. It’s enough that somebody listened, took us seriously, evaluated patterns underlying our difficulties, and found a way to help us understand. That’s all we needed to find our own way, to thrive and flourish.
Some of us, though, have been so pressured and battered by an uncomprehending and stigmatising life that the clarity that comes with medication also carries the aching revelation that our graceful childhood spirits have turned into cut-down and subjugated ghosts. Taking the right medication is not all we need. Before we can move from surviving to thriving we need help, we need to rediscover our true spirits, our real potential. Yet we’re stuck in the low income, or underemployed, or unemployed bracket. So we ask the NHS for help, get sign posted to psychological therapies, by the same cheery folk our clan members encountered, and off we shuffle to join the end of a waiting list. There we are waiting, masks firmly in place (we don’t want pity), acting as if we don’t care but feeling worn-out, inside crying, mourning for our lost and trusting childhood. We’re surviving and that’s all!
Still, at least the mere fact that we’re waiting allows us a bit more hope than those of us who’ve not been noticed. Some of us in this group are being shuffled from one wrong diagnosis to another wrong diagnosis, from one wrong medicine to another wrong medicine. Never having our true reality heard or acknowledged. Some of us become disheartened, lose faith and sink into helplessness. And then what about those of us who learn to believe from early on that we are seemingly born to live life as a failure, never understanding why that appears to be our fate? All of us too are barely surviving!
It’s such a waste because every single one of us with ADHD has the potential to flourish. We would love to use our strengths and abilities to help others, to be a benefit. We don’t need much. Just the right attention and the right support at the right time. Actually you know what? That’s not hard to provide!
Now I’m angry again so I’m jumping right off the fence and pointing my finger squarely at you, the Government. I’m pointing at you, Theresa May, as well as at you, Jeremy Hunt. If you get back in charge, for goodness sake stop with your wasteful changing, privatising and building inequality into the health service. Instead, if you really care about helping people to thrive, helping the country to prosper (you do, don’t you?), stand back and for once look at the big picture.
The prevalence rate for children with ADHD is between 5 to 7%, of whom approximately 65% will continue to experience symptoms in adulthood. In other words, roughly 3% to 4% of all adults have ADHD. To make it clearer, about 1 in 25 adults have ADHD. That’s a lot of us! That’s a lot of us costing you a lot of money!
Leaving us unrecognised, undiagnosed, untreated or treated ineffectively, or pushing us onto waiting lists is costing you, the Government, a lot of money in lost tax revenue, inappropriate treatments, repeat visits to A&E, clearing up after our accidents, looking after our brothers and sisters in prisons, and so on and so on (you want evidence, ask and we’ll give it freely). It’s cheaper, far cheaper, to increase NHS mental health funding so that all of us can receive proper help! We want to use our strengths, abilities and skills. We can use them to thrive and flourish!
And here’s a final note, the need for mental health awareness and funding did not disappear with the end of Mental Health Awareness Week. The two thirds of people living in England, Scotland and Wales who’ve experienced mental health problems, including all of us with ADHD, are still here on Monday morning. Funding and treatment for everybody experiencing mental ill health is still needed and is still vital. With that, and with preventative care, all of us will thrive and flourish and so too will the country.
I’ve had my say for now! It’s time for you, the Government (whichever of you ends up in charge) to listen and act!
The UK Adult ADHD Network (UKAAN) will host its 7th Congress from Thursday 21st to Saturday 23rd September 2017 at the Mermaid Conference and Events Centre in London.
The title of this conference, ADHD in the Mainstream, reflects the increase in recognition and treatment of ADHD by adult mental health services. But despite the fact that ADHD is a common disorder, and despite the fact that the role that ADHD plays in the health of many adults presenting with mental health problems is more recognised, recent evidence suggests that the disorder is still being unrecognised or untreated for many adults using mental health services. Since there is considerable psychiatric morbidity associated with ADHD, this lack of full recognition leads to unnecessary distress to individuals, ineffective targeting of treatments, poor control over chronic mental health problems and the development of adult onset disorders later in life.
Licensed drug treatments for adult ADHD are now available for the first time, including both stimulant and non-stimulant mediation and recommendations from guideline groups such as the National Institute of Health and Clinical Excellence (NICE). The importance of concurrent psychological treatments is also recognised.
Mainstream psychological treatment services need to develop the understanding and skills required to manage mental health problems related to ADHD. This conference, therefore, is designed to raise the level of awareness, knowledge and expertise among health care professionals about people with ADHD and to provide a better understanding of the persistence of the disorder, the development of comorbid mental health problems as well as the delivery of effective treatments.
This conference is relevant for all health care professionals interested in the mental health of people from the adolescent years through to early, middle and later adult life.
The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators and is designed to cover key topics relevant to the diagnosis and treatment of ADHD from adolescence to early and late adulthood. The selection of speakers is particular important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.
The Scientific Programme, list of speaker, and registration information are all available on UKAAN’s website here https://www.ukaan.org/adhd-in-the-mainstream/