Politicians

ADHD: Surviving or Thriving?

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!

Complaint to Chief Whip re Mr Graham Allen MP & ADHD ‘not a real disease’

Update on 2nd May 2014: to email sent to the Opposition Chief Whip regarding Graham Allen MP and his guest Dr Bruce Perry of “ADHD not a real disease” infamy.

I have not yet had a reply to the letter below which I sent on Tuesday, 8th April 2014 despite the fact that I was told by a member of Rosie Winterton’s staff that we would get a reply within two weeks.

I was polite and gave them three weeks to allow for the Easter week, and then rang Rosie Winterton’s office yesterday morning (Thursday, 1 May 2014) at 9:15 am.  An equally polite chap answered the phone, he recognised the name of AADD-UK and he knew about our complaint.  He explained that the Special Advisors (Spads) were “looking at it” and would get back to us. I asked which Spad in particular is “looking at” the complaint, and if he had any idea when the Spad would get back to us.  The polite chappie said he didn’t know when we would get an answer because he’s just the civil servant, but he did give me the name of the Spad, Luke Sullivan. The civil servant also told me that he’d again put our complaint in front of Luke Sullivan.

Fingers crossed this is more promising than it sounds! Somehow the “Thick of It” popped into my mind during this conversation.

Just as a BTW I see that Luke Sullivan was a Spad in the Chief Whip’s office when Gordon Brown was Prime Minister (2009) which surprised me because I thought Spads got sacked when their bosses left. The document I looked at also gave his pay scale which wasn’t bad, not bad at all considering that he was only in pay band 2 which was near the bottom.

And just in case you are wondering who Rosie Winterton is, well she was Labour’s pension minister when The Telegraph wrote about her on 29th May 2009 in relation to the expenses scandal.  And if you read the article (click here) you will see that her salary wasn’t bad, not bad at all, and much, much better than Luke’s.

Now I’m going to confess to you that before  I rang Rosie Winterton’s office I had an ADHD moment and by mistake I rang the office of the Parliamentary Commissioner for Standards (that’s the office that found Maria Miller MP guilty of claiming £45,000 in expenses to which she wasn’t entitled, and was then subsequently overruled by a committee of MP’s–beg their pardons there were three lay members on the committee except of course they weren’t allowed to vote).

After we’d sorted out that I wasn’t talking to the person I thought I was, we had a nice chat about how members of the public can hold MP’s accountable for their conduct (after I’d explained that we’d  already written to Ed Miliband,  Harriet Harman, Rosie Winterton, and of course Mr Graham Allen himself and were still waiting to hear from any of them) and as a result of our little chat I’ve now learnt that as members of the public we’ve got 3 options namely vote next year (duh!!), get legal advice (expensive waste of money when we already know Graham Allen is wrong,) or go to the media (aha!).

So there we are for the moment; waiting to hear something (hopefully more than nothing)from Mr Luke Sullivan, SpAd to Opposition Chief Whip, Rosie Winterton MP Labour.  We’ll keep you updated!

Further Update: 2nd May 2014 p.m.

And now we read in the Closer that Katie Hopkins (the former apprentice that Sir Alan Sugar called unemployable) has made it her mission to attack mothers of children with ADHD.  Even worse according to today’s  article in the Closer, Katie Hopkins was “inspired into ‘badmouthing’ ADHD children by Dr Bruce Perry” and what’s more the remainder of the article contains several unhelpful remarks about ADHD that were made by Katie’s ‘hero’ on the eve of his visit to the UK.  Dr Perry was invited to the UK by Graham Allen MP. So thank you very much Mr Allen for encouraging the likes of Katie Hopkins!

Tuesday, 8th April 2014

The following email has been sent from AADD-UK to the Opposition Chief Whip:

Right Honourable Ms Rosie Winterton, Opposition Chief Whip 

I am writing on behalf of Adult Attention Deficit Disorder – UK (AADD-UK) to make a complaint about Mr Graham Allen. We have tried to resolve the matter directly with Mr Allen but he has not responded.

 

Mr Allen has endorsed an article that appeared in the Observer on Sunday, 30^th March 2014 titled “ADHD ‘not a real disease’ says US neuroscientist.” Mr Allen has placed a photograph of this article (30^th March) on his official Twitter account (@GrahamAllenMP) along with the caption “Dr Bruce Perry, my Early Intervention hero, in UK today, want to attend his EIF events over next 2 days?”

 

In addition, Mr Allen also has placed a photograph on Twitter (1^st April) which is captioned “Dr Bruce Perry speaks to Labour shadow ministers this morning”, this photograph and caption gives the appearance that Dr Perry’s views could potentially also be the Labour Party’s views (I have attached copies of Mr Allen’s Tweets).

 

We feel that Mr Allen is potentially in breach of the Code of Conduct for Members of Parliament namely:

 

1. Members have a duty to uphold the law, including the general law against discrimination.

 

We feel that it is harassment for a public figure, an MP, to invite and host a doctor who in the past has spoken against ADHD, and then to publicly approve his guest’s stigmatising opinion made on the eve of his visit to the UK that ADHD is not real. It is harassment not only because ADHD is a recognised disability that meets the requirements for a protected characteristic under the Equality Act 2010, but also because people with ADHD in the UK already had significant problems with daily living intensified by shame generated from home-grown discriminatory comments and behaviour.  We did not, therefore, need Members of Parliament validating such derogatory opinions and thus causing us further humiliation and distress.

 

2. Members have a general duty to act in the interests of the nation as a whole; and a special duty to their constituents.

 

Given that the prevalence rate for ADHD in the UK is between 2-5%, it is more than likely that Mr Allen has constituents with ADHD.  His inviting and hosting a guest such as Dr Perry who openly speaks his mind about ADHD, followed by Mr Allen’s public endorsement of Dr Perry’s views makes it nearly impossible for Mr Allen’s constituents who  either have ADHD themselves, or care for someone with ADHD, or have a friend or relation with ADHD to contact him and ask him to represent their interests and concerns in the House of Commons.  It also means that they are excluded from political activities for as long as Mr Allen remains their MP.

 

The National Institute of Clinical Excellence, in 2008, completed a full review of the diagnosis and treatment of ADHD across the lifespan and published guidelines in September 2008.  These guidelines did help to stimulate the development of service provision for ADHD in the UK.  But ADHD services, particularly for adults, are still too scarce in the UK.  This is of relevance for children and young people because as they transition from Child and Adolescent Mental Health Services there are frequently no adult services available in their area.  And unfortunately austerity measures have meant that many mental health services have been cut, and sometimes waiting lists for ADHD services can be as long as 18 months!  Indeed sometimes the barriers are so high that people with ADHD have resorted to asking their MP’s for help accessing services. This makes it all the more disappointing that Mr Allen presents himself as endorsing the view that ADHD is not real, because this means that people will be deterred from going to their MP’s for help, not just for ADHD matters but for any reason.

 

Mr Allen is not setting a good example and this is not good for the nation because the proportion of people receiving treatment for ADHD in the UK is lower than the prevalence rate and failure to treat ADHD is costly to society. There is plenty of evidence to show that untreated ADHD leads to increased rates of unemployment, addictions, criminal convictions, and poor social adjustments.  I have included links to relevant documents at the end of this email.

 

In addition, when Mr Allen endorsed Dr Perry’s opinions in a Tweet and followed this up with a Tweet accompanied by a photograph of Labour Shadow Ministers listening to Dr Perry, and a photograph of Dr Perry with Francis Maude the perception was created that it could be Labour policy as well as Coalition Government Policy to discount ADHD as a valid disorder. That’s a deterrent that would inhibit the rest of us from also engaging with the entire political process.

 

3. Members should act on all occasions in accordance with the public trust placed in them. They should always behave with probity and integrity, including in their use of public resources.

 

Dr Perry would possibly not have had a chance to express his opinions in the UK media if he had not been invited to come and meet Government ministers by Mr Allen.  But he was invited here, and his opinions have been endorsed and validated by Mr Allen, not just  by the publication of the photograph that we described  earlier, but by the fact that Mr Allen helped Dr Perry meet with Government officials including Iain Duncan Smith, Jeremy Hunt, and Francis Maude (see attached photograph) and also with Labour Shadow Ministers.  This creates the further perception, rightly or wrongly, that taxpayer money is being used to help promote anti-ADHD views, as well as to pay for the time of ministers and others who met with Dr Perry, who sat and listened to his presentations, and who in at least one case was photographed with him.   

 

4. “Members shall base their conduct on a consideration of the public interest, avoid conflict between personal interest and the public interest and resolve any conflict between the two, at once, and in favour of the public interest.” (V, 10)

 

We most definitely feel that Mr Allen has confused and mixed his personal interests and opinions with public interests regarding his work in early intervention, his reports about early intervention, as well as his creation of the Early Intervention Foundation.   We are concerned that Mr Allen invited, hosted, and endorsed Dr Perry who on the eve of his visit to the UK to meet with Government ministers on behalf of Early Intervention expressed to a major newspaper the biased and inflammatory opinion that ADHD is not real because that makes us wonder how Mr Allen’s Early Intervention Foundation will be able to provide “practical advice and support to those trying to make Early Intervention a reality on the ground” when at the core there appears to be a complete lack of knowledge and acceptance that a common neurological disorder affecting behaviour and attention is indeed real.

 

To resolve this conflict in favour of public interest we feel that ADHD should always be a consideration in anything relating to early intervention whether it be of Mr Allen’s design or that of others, and we would like written assurance regarding that. We should also like Mr Allen to withdraw all photographs and references relating to Dr Perry from his Tweets and that includes the photograph of the Observer article. And finally we would like a letter of apology from Mr Allen which we will publish.

 

At the bottom of this email is a sampling of some of the articles that appeared in the traditional press repeating response to Dr Perry’s opinions (Dr Perry was also widely quoted in many other news sources, various blogs, forums, Facebook, and Twitter), as well as a sampling of information about ADHD.

 

I look forward to hearing from you.

Dr Bruce Perry: ADHD is “not a real disease”

AADD-UK has sent the following email to Graham Allen MP with copies to Ed Miliband, Harriet Harman, & Andy Burnham:

Dear Mr Allen,

I am very sorry to say this but one of your tweets (at 12:46 p.m. on Sunday, 30 Mar 2014)  has caused considerable offence. It is a photograph of a newspaper article entitled “ADHD ‘not a real disease’ says US neuroscientist” and above it you have placed the following caption: “Dr Bruce Perry, my Early Intervention hero, in UK today . . .”.  

I have attached a copy of your tweet. 

The offence caused by the photograph is made worse by your use of the word “hero” to describe Dr Perry.  

Also, I don’t know if Dr Perry was misquoted in the Observer, but if he wasn’t it was not helpful for your guest to make such statements about ADHD (an area in which he does not have specialised knowledge) on the eve of his visit to the UK.  His remarks, as stated in The Observer, were very widely publicised in many reputable and otherwise newspapers, blogs, and forums. And all this at a time when people with ADHD are already struggling to overcome considerable stigma and discrimination as well as struggling to access much needed help so that they can live fulfilled lives. The firestorm of adverse publicity increased the distress and anxiety of many people with ADHD. 

Would you please consider taking down the offending tweet and offering an apology to people with ADHD. I appreciate that you are trying to do your best for children through the Early Intervention Foundation, but since mental health services (and other much needed services) have been badly affected by the coalition government’s cuts, we all, adults included, need at least some politicians that we feel will listen. 

I look forward to hearing from you.

So now we are waiting to see if they are listening! We’ll keep you updated!