On Sunday, 9th December 2018, we sent the following email to the Chief Executive and Trustees of the British Psychological Society (BPS):
Dear Mr Bajwa and Trustees of the British Psychological Society,
I would like to bring to your attention the harmful manner in which Attention Deficit Hyperactivity Disorder is referenced in the document titled ‘Power Threat Meaning Framework’ (PTMFramework).
Lucy Johnstone, lead author, on 30 November 2018 told us on Twitter that all discussions of ADHD had been specifically excluded from the PTM Framework (see attached: ‘Tweets September to 30 November 2018’). But to date, the uncorrected version of the PTM Framework ( i.e. the version containing 16 references to ADHD, all of which are stigmatising and harmful) is still on the British Psychological Society’s website here https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework
If you are able, please could you provide us with a copy of the amended version of the Framework and ensure that the uncorrected copy is replaced?
If it has not been amended, please could you discuss this matter with the Trustees as to whether or not the Framework meets the requirements of the BPS Royal Charter.
Sadly, we have some doubts as to whether the Framework has been amended as Lucy Johnstone and her fellow authors are adamantly opposed to psychiatric diagnoses as illustrated in one of the attached tweets as well as in the following quote from the 3rd paragraph on page 314 of the PTM Framework:
At the same time as affirming people’s right to describe their difficulties as they wish, we affirm the equally important principle that professionals, researchers, trainers, lecturers, charities, policy-makers and others involved in the mental health field should use language and concepts that have some claim to be descriptively accurate and evidence-based. Because psychiatric diagnosis does not meet these standards, it follows that it can no longer be considered professionally, scientifically or ethically justifiable to present psychiatric diagnoses as if they were valid statements about people and their difficulties. To draw an analogy from psychiatric history, once it becomes clear that terms like ‘wandering womb’ are mistaken, no professional should be offering – let alone imposing – them.
For your information here is some background:
In January 2018, the launch of the Power Threat Meaning Framework was heavily promoted on Twitter under #PTMFramework and as part of the launch it was also advertised as being available on the British Psychological Society’s website. As a result of this we, Adult Attention Deficit Disorder-UK (AADD-UK), became aware of the published document so we downloaded the full version (414 pages) and read it.
There are 16 specific references to Attention Deficit Hyperactivity Disorder (ADHD) in the framework (see attached document) which are in themselves incorrect and when read in the context of the framework as seen in the quote above.
We’ve given our feedback to the authors many times since the launch of the PTM Framework, but until 30th November 2018 it has been consistently ignored. Please note that while Lucy Johnstone says she won’t engage in a debate about the framework, she is still actively promoting it on Twitter.
We are bringing this to your attention as well as the attention of the trustees not only because Lucy Johnstone directed us to the BPS but also because the presence of the BPS Logo on the Framework lends credence and validity to statements which stigmatise people with ADHD.
If you have any questions, please do not hesitate to contact me. I’m very willing to help.
Today, Wednesday, 2nd January 2019 we received the following reply from the Governance Manager at BPS:
Your complaint as set out below has been forwarded to me for attention. I am very sorry to learn of your concerns
I am making enquiries into the matters which you raise and I will be in touch as soon as my enquiries are complete
Finally, it looks as if some progress is being made by the BPS and we’re hoping this means that at last someone is taking our complaint seriously. We’ll keep you updated and in the meantime our fingers are tightly crossed.
Here is a link to the copy of some tweets we sent to the BPS, Tweets September to 30 November 2018
And here is a link to a list of the statements in the Power Threat Meaning Framework that we sent to the BPS, Quotes from PTMF for Letter
And finally, if anyone is interested in reading more, here is a link to the 414 page version of the Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis
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, 30th March 2014 titled “ADHD ‘not a real disease’ says US neuroscientist.” Mr Allen has placed a photograph of this article (30th 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 (1st 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.