It’s ADHD Awareness Month! Feel free to download, print, tweet or otherwise use these posters – as usual, they’re all about spreading the word 🙂
…Unfortunately, NHS choices still don’t provide information for people looking for ADHD services in the UK.
How many Awareness Weeks will pass before we start to pay #AttentionUK?
We’re still fighting for our All Party Parliamentary Group.
We’re still fighting for our ADHD Act.
We still demand to be included in our government’s plans for mental health.
We still demand to be acknowledged by our national mental health charities.
We’re still here, we’re not going to stop, and you can’t ignore us.
A great article on approaches to neurodiversity!
I’ve written before about how the concept of neurodiversity means different things to different people (see here and here). I want to build on this by thinking through some different approaches to neurodiversity advocacy. This should be seen as a first attempt to clarify these different approaches rather than the final word.
The three quasi-sociological categories I propose are Neoliberal Neurodiversity, Marxist Neurodiversity, and Intersectional Justice Neurodiversity. Each is defined more by emphasis rather than core traits. In practice, most of us sit somewhere between two or more of these, but each of us will likely veer more towards one or another nonetheless.
I am suggesting these distinctions since getting clearer about such differences will be helpful for understanding how best to cultivate real world…
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As the year comes to a close, we want to share a victory from 2020 that we are very proud of. With help from Priscilla Eyles in particular, Mind have finally agreed to host a page with information about ADHD. The page is a bit hard to find on their website (you have to actively search for ADHD) but it as least there and ADHD is finally being acknowledged as a real condition with real mental health implications. We have been working on this since 2017, and can’t count how many emails we have sent Mind about it, so we’re very pleased. Hooray!
We will continue to work on getting Mind to recognise ADHD as a mental health disorder that is neurodevelopmental in nature, and to include more detailed information on it, including on their general information pages.
If you have been involved in any way, whether by emailling Mind yourself or retweeting us, thank you for your support!
Please take the time to sign this petition for a debate to be held in Parliament on the funding and availability of adult ADHD services in the UK.
This petition has been started by George Sharpe, a man with ADHD who is reiterating the messages at the heart of our campaign and of many other ADHD charities across the UK. His experience mirrors that of so many people in the UK who have untreated ADHD and whose lives could be radically different if they just had access to a diagnosis and treatment without years on a waiting list first.
We have great respect for George and would like to publically state that Attention UK absolutely supports this petition.
We would be happy to provide any amount of evidence-based statistics or information about ADHD that may assist either George in his petition or a debate in Parliament on this topic.
This week, Healthwatch are running a survey encouraging service users across the UK to speak up about their experiences of health and social care. The hashtag for this is #SpeakUp2020 and the survey is available at https://www.healthwatch.co.uk/speak-2020. You can also contribute by emailing your local Healthwatch directly – a list of all localities and their email addresses is here: https://www.healthwatch.co.uk/your-local-healthwatch/list
This seems like a great opportunity for us to get our voices heard about the lack of ADHD provision across the UK. With this in mind, please use this template email to contact your local Healthwatch about your experiences: http://bit.ly/ADHDtemplate
As part of #SpeakUp2020 I am contacting you to get my voice heard. Please accept this email as a submission as it was more accessible for me to contact you this way than to fill in the online survey. My submission is about the local ADHD services in my area as well as the national lack of services for adults with ADHD in the UK. I live in <enter where you live> and there are major problems with accessing ADHD services. I have been waiting for <enter time you have been waiting for> to get seen for an assessment, and this would never be the case if it was a physical condition. This isn’t fair – ADHD is a recognised disability under the Equality Act (2010) and without treatment it causes so much pain to those who have it.
In 2017, Healthwatch in York wrote this report all about the problem in that area: https://www.healthwatchyork.co.uk/wp-content/uploads/2014/06/Support-for-Adults-with-ADHD-A-HWY-Report.pdf. It would be amazing if a study like this could be extended to other areas. The stories in this report are the same for people all around the UK so please do read them to get an idea of what I and other people with this condition are having to go through at the moment.
The prevalence of ADHD is approximately 5%, so that means that in the UK there are around 3,394,301 (3 million, 394 thousand and 301) people with ADHD. But of all of those people, only 2.3% of the adults have had access to a diagnosis and only 0.1% of us have been able to access treatment. Because of the way ADHD has been portrayed in the media, people think it’s ‘easy’ to get an ADHD diagnosis when actually it is impossible. Some doctors still even believe that ADHD isn’t real or only affects children, and we all experience so much stigma if we even mention ADHD even though all controversy around ADHD has now been disproved by brain imaging technology. All across the UK people with ADHD are marginalised and our voices don’t get heard as we struggle with paperwork and forms. Please help us by looking into this problem, as it is a national problem and up and down the UK we are being let down by the NHS. You can see how much of a postcode lottery this is by looking at this map: https://www.ukaan.org/adult-adhd-service-map and to see the evidence for all of these statistics and how much of an impact undiagnosed ADHD is having on the UK, please look at https://attentionuk.org/about/why-you-should-care/.
Thank you so much for taking the time to read my email and please let me know if you have any questions.
When we first launched this campaign in March 2017, there were no other campaigns like it existing in the UK.
In government, only a small handful of politicians (specifically: Jeremy Corbyn, Norman Lamb, Annette Brooke, Gregory Campbell, Martin Caton, David Simpson, Dr William McCrea and Margaret Ritchie) had mentioned ADHD, proposed a motion to support, or even voted on a motion in support of ADHD for over thirteen years.
Since we launched #AttentionUK in March 2017, the tide has shown signs of turning.
Organisations such as ADHD Action have backed our call for better ADHD services, and Jo Platt has committed herself to the new APPG on ADHD, for which we are deeply grateful.
The #ITakeMyPillsBecause hashtag, started by the wonderful Jessica of @howtoADHD, gained international traction in response to a damaging Netflix production which perpetuated stigma on medicating for ADHD. Jessica was already a great ADHD ambassador long before our campaign was founded, and if you’re not familiar with her already, we’d strongly recommend checking out her YouTube channel (@howtoADHD) for any and all of your ADHD-video related needs!
Additionally, Mr Daniel Johnson MSP has spoken out about ADHD stigmatisation in Parliament and on social media. The nature of politics makes it extremely unusual for any politician to share anything about their personal opinions or private life which could cause any possible risk to their reputation. Daniel Johnson, however, has not only been willing to risk media criticism by defending the use of medication for ADHD, but he has even made his own ADHD diagnosis and medication status public in a show of true solidarity with all adults with ADHD in the UK. His courage and determination is inspirational, and he is an ambassador to us all.
We have launched our own Media Guidelines to try and tackle the ongoing problems of misrepresentation and stigmatisation of ADHD in the media. The guidelines are shaped by other existing guidelines for other mental health conditions as well as the opinions of people with ADHD in the UK who we canvassed at the time of writing.
Despite all of these happy developments, there is still such a long way to go, and with every happy story comes another stigmatising headline or misrepresentative media portrayal. So far we haven’t actually seen any real change, or even any commitment to change, from our government. We need to keep fighting.
Being diagnosed with ADHD as an adult helped me make sense of a chaotic life – an article by Priscilla Eyles for iNews
I only discovered by chance that I had ADHD.
After losing my passport in Thailand in spring 2016, I Googled ‘how to stop losing stuff’. It turned out to be one of the major symptoms of ADHD.
Getting my diagnosis explained a lot. ADHD explained why I could be so intelligent in conversation, and academically bright in subjects I’m interested in, but it also explained why I couldn’t hold onto my keys, or would continually get into trouble for forgetting to close the front door, or buy the milk.
It explained why I am so often running late to another appointment, interview, meeting or station, costing me my self-respect and hundreds of pounds in travel tickets.
It explained why I could be emotionally hypersensitive to any sign of rejection, overcompensating with sometimes debilitating perfectionism.
I was undiagnosed when I left the safe structures of school and university which were just about keeping me together. When I entered working life, I wasn’t prepared at all
It explained why I had such intense relationships and depressive lows – even suicidal thoughts – when they ended.
The realisation that I had it was like a jigsaw puzzle coming into place, and when I started reading more, the tears kept coming.
They were tears of relief that I wasn’t alone. They were tears of sadness for all those years wasted thinking I was a worthless, fundamentally flawed child-woman, who no matter how hard I tried couldn’t do this thing called life, couldn’t be a responsible adult and couldn’t get a steady job or partner.
Concentrating on ADHD
It was no surprise to me that according to a new report by thinktank Demos, awareness of ADHD in adults especially is poor, meaning that many people (and, I would add, especially women) go undiagnosed and untreated. This is costing the UK billions a year in wasted talent.
There are more serious implications too. According to #AttentionUK, adults with untreated ADHD are seven times more likely than their peers to have had multiple vehicle crashes, twice as likely to be fired from a job and nine times more likely to end up in prison.
40 per cent of the UK’s prison population have undiagnosed ADHD, say #AttentionUK statistics
This a huge problem when you consider that 2.5 per cent of adults are affected by the disorder and most are undiagnosed.
I was undiagnosed when I left the safe structures of school and university which were just about keeping me together. When I entered working life, I wasn’t prepared at all.
Years of unpaid work at magazines followed, as did years of working retail jobs that bored me stiff, and months of working in mundane admin jobs my creative mind couldn’t hack. It was no surprise that I was fired from two of them, and no surprise that my self-esteem was in pieces.
I’ve accepted ADHD as part of who I am now, but it’s been very hard to get to that place.
I’m based in Camden, supposedly the ‘best’ borough in London for mental health care. I’ve been told I would have to wait three whole years to see a specialist at St Pancras Hospital, with no recourse to getting on a shorter waiting list at renowned specialist hospital The Maudsley.
I have also been dealt with by GPs who can only give me a few 30-minute sessions of cognitive behavioural therapy (most of which I turned up late for, thanks to my ADHD) and can only prescribe me antidepressants for my anxiety, but can’t treat the ADHD which is inextricable from that anxiety.
I now appreciate how creative, interesting, unique, caring, non-conformist, curious and funny we ADHDers are
I’ve now gone private. It’s cost me over £550 to do so and will cost more as follow-up appointments with a psychiatrist cost £195 whilst my therapist costs £65, and that’s at the cheaper end.
I am one of the lucky ones: I have a full-time job and parents who support me, so I can afford it. But what about those who never get the support and treatment they need because they are never diagnosed? Or those who know there’s something amiss but simply can’t afford to investigate, or who instead get misdiagnosed as having borderline personality disorder, depression and anxiety?
Before I knew I had ADHD, I thought well, that’s just me: ‘Liability Priscilla’. It became a running joke amongst my friends that I would always be late, always leave something at a party, or that I would overreact if I wasn’t invited to something – that last one cost me a few friendships.
After the initial discovery and passing through the stages of grief that come with realising that you’ve been living with a treatable condition all those years – misunderstood and unsupported – I’ve come to the final stage of acceptance and hope.
Don’t get me wrong, I still have very self-critical moments; I cursed myself recently for forgetting to lock my bike after running late for a meeting, and it then being stolen.
But I know now why I am the way I am and can understand and manage myself better.
I also now appreciate how creative, interesting, unique, caring, non-conformist, curious and funny we ADHDers are. We’re exhilarating and refreshing to be around and there’s never a dull moment – we don’t have time for them.
Priscilla Eyles is a writer, improv comedian and charity worker for Anthony Nolan.
The British Psychological Society (BPS) recently published something called a “Power Threat Meaning Framework” or #PTMFramework if you’re on Twitter. It was 411 pages long, and made various scientifically inaccurate claims that generally encourage the stigmatisation of service users who feel they have been helped by psychiatric diagnoses such as ADHD.
Although registered bodies, such as AADD-UK, immediately voiced their shock and registered serious concern about this, there has been no response from either the funders (the Division of Clinical Psychologists), or the British Psychological Society themselves. The publication of these suggestions, as well as the behaviour of a registered psychologist who took the opportunity to send AADD-UK a series of inappropriate tweets, breaches the Health & Care Professions Council (HCPC) standards of conduct, performance and ethics – which are essentially rules for how health and care professionals should behave.
AADD-UK have written an open letter to the BPS which you can read here. They restate their shock and disgust at the BPS’s publication of a Framework that makes the strong and “stigmatising suggestion that ADHD is an illusory, unprofessional, unscientific and unethical diagnosis”. They also note that “our views were not sought before publication” and that although they asked for a response, “none has been forthcoming… although a registered psychologist, supporter of the framework, did send us inappropriate tweets”.
For a body like the British Psychological Society to release a publication that features contents amounting to hate speech about people with a certain disability, and for it to remain unaddressed even now, is nothing short of a joke.
How can this be allowed to happen? How long until you Pay Attention, UK?