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.
SUPPORT FOR ADHD AT WORK EVENT…don’t miss out! Find out how with the Access to work scheme you can apply for funding to help you with your ADHD at work, including support such as ADHD coaching, CBT, and Support Workers. The Fed are hosting a special meeting especially for Adults with ADHD 10th April 6pm – 8pm @ Brighton (Sevendials). If you would like to come remember to RSVP!….see the link for more details or see the email invitation if you’re on the ADHD Brighton mailing list. http://aadduk.proboards.com/thread/7782/support-adhd-event-april-brighton
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!
Background and context
This survey came as a result of the researcher’s collaboration with AADD-UK and his regular attendance to 4 support groups which generated questions in relation to the development of adult ADHD support groups; how many groups are there in the UK, what is their membership and what do they do? The numbers of groups making contact with AADD-UK and its website has been growing in the last five years; they are very diverse in their organization, in what they provide and so are the local contexts in which they evolve. But they all have in common that they provide a much needed space for information, help and support for individuals who are or have yet to be diagnosed with ADHD as well as for their relatives and partners.
The aim of this survey was to provide an updated picture of the state of adult ADHD support groups in the UK; we hope this would in turn help individuals, families and professionals in accessing updated information on the AADD-UK website for better local signposting.
SUMMARY OF FINDINGS
1. Significant increase in numbers of support groups, starting from 2009, peaking in 2011 and an increase of membership.
It is worth noting a rapid increase in numbers of groups since 2009, but it is unclear if this trend will continue. Some groups have also folded in the last 2 years, mainly for reason of lack of funding and so the present economical context may make it difficult for some groups to develop or sustain their activities. An increase in membership has also been observed in the three groups the researcher has had contact with since 2009; the average attendance then was of 11 members per meeting, it is now in 2013 an average of 19 members per meeting with a gender mix of 52% male, 48% female.
2. 9 groups out of 23 , just under 40% , receive funding
There are more groups receiving funding than ever before, and the more recent groups seem very good at that. More data is required to understand how funding is accessed, if groups are set up as charities, social enterprise and how sustainable the funding is.
3. Three quarters of the groups are run by adults who describe themselves as having ADHD.
Despite the difficulties that ADHD can produce the large majority of groups are run by facilitators that identify themselves as having ADHD, and some do this in partnership with people who do not have ADHD. Out of the 14 new groups that have formed since 2009, 13 of them have been formed by adults identifying themselves as having ADHD. More research would help in understanding what their experiences bring in the running of a support group.
4. Wide range of activities, including 6 groups providing structured courses.
The groups are adapting to the local context and the needs of their members with ADHD and provide more and more services that are not provided anywhere else. But the main activity the groups have in common is the support and help they give to each other through the sharing of their experience of living with ADHD.
We believe these findings show a vibrant and growing community of support groups for adult with ADHD that are resourceful and determined to provide a safe place to share experience and information.. This survey highlights some of the common points between groups but the diversity between groups is also worth noting, each group is unique in its history and style and respond to particular local circumstances. The full survey is available in our library here.
Claude Jousselin and the AADD-UK team.
The UK Adult ADHD Network (UKAAN) will host its 4th Congress in September 2014, entitled ADHD – Mind, Brain and Body, in conjunction with ENAA and APSARD. The conference will take place over 3 days, at the Mermaid Conference and Events Centre which is situated between the City and the West End in London. Located on the North Bank of the Thames, it enjoys spectacular views towards the Tate Modern, the Globe theatre and the Millennium Bridge. The theatre will accommodate 600 people, and there will also be opportunities to attend parallel sessions throughout the event.
The conference will bring together internationally recognised experts in the diagnosis and treatment of ADHD across the lifespan and highlight basic science and clinical research that contributes to our current understanding of ADHD as a lifespan disorder. Clinical services for ADHD during the transition years from adolescence to adulthood and for those newly diagnosed as adults are developing rapidly throughout many parts of Europe. The conference will build on this growing expertise by providing a uniquely European perspective that highlights the full range of functional, cognitive and mental health impairments, the impact that ADHD has on adolescent and adult mental health and the contribution to adolescent and adult psychopathology. This meeting will address important clinical and scientific questions relating to ADHD and will be relevant to anyone interested in the mental health of people from the adolescent years through to early, middle and later adult life.
This meeting aims to raise the level of awareness and knowledge among health care professionals about people with ADHD as they grow older; and to provide a better understanding of the causal pathways involved in the persistence of the disorder and the development of important clinical comorbidities. 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 during the critical period from adolescence to 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 UK Adult ADHD Network (UKAAN) was established in March 2009 to provide support, education, research and training for mental health professionals working with adults with Attention Deficit Hyperactivity Disorder (ADHD). UKAAN was founded by a group of experienced mental health specialists who run clinical services for adults with ADHD within the National Health Service.
More information about the 4th Congress, and registration details are available on UKAAN’s website here.
UKAP (the UK ADHD Partnership) will host its first conference on Friday 4th April 2014. This one day event will take place at the Thistle Charing Cross Hotel, London, with a conference on ‘Reducing the Costs of ADHD across Education, Health and Care’ .
The aim of the meeting is to introduce, education, healthcare and allied professionals to the UKAP committee’s objective to raise the profile of ADHD on the political agenda in order that young people with ADHD gain better recognition and access to treatment across educational, occupational, youth justice and healthcare settings.
UKAP would also like to invite parents, carers other voluntary sector organisations and support groups who are working to support ADHD, to join them in their call to action which seeks to inform policy makers and authorities of the importance of early identification and intervention.
With presentations on the costs of ADHD, the impact on education, the family, the youth justice system, health service, accidental injury and driving, UKAP will consider what can be done to reduce the burden of ADHD on children, the family and more broadly in society. The programme will include presentations by prominent opinion leaders, and internationally recognised clinical and educational practitioners.
This meeting will be relevant to all education and healthcare practitioners working with children and young people, together with allied professionals involved in multi-agency working including educational, occupational and youth justice settings, as well as commissioners and policy makers.
For more information and registration details see the UKAP website here.
A very interesting paper in The Harvard Review of Psychiatry looks at the effect methylphenidate has on the brain. This is a link to the original article (the abstract is free).
There is a more layman friendly description in ScienceDaily. (And before anyone writes in, yes, we are aware that the word ‘normalises’ is spelled differently on either side of the Atlantic.)