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.)