February 25, 2016
The NHS Wiltshire Clinical Commissioning Group has now put an expanded explanation on their website as follows:
The contract for Attention Deficit Hyperactivity Disorder (ADHD) services in Wiltshire is held by Avon and Wiltshire Mental Health Partnership Trust (AWP). The current contract will come to an end at the end of March. We have negotiated a temporary ADHD contract with AWP to cover the period from 1 March 2016 until 31 August 2016. This extension will ensure that a large proportion of the current services can continue until we are able to review the whole contract, and a permanent two year contract can be agreed. The new contract will be in place by 1 September 2016. If we achieve this earlier you will, of course, be advised accordingly.
Until this time AWP will continue to provide an ongoing service for:
•Existing patients who have already been assessed and diagnosed
•Existing patients who require ongoing follow up and prescribing
•Patients already being cared for under the shared care process
•Urgent and/or prioritised new referrals as approved by the CCG Exceptions Panel
However, AWP will not be accepting new referrals unless identified as above.
Please note the PALS team at the CCG advise that they have requested this information is updated to confirm that it relates to the adult service as this is not clear.
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February 23, 2016
The Bristol Adult ADHD Support Group has received the following update regarding the Wiltshire NHS ADHD service:
Wiltshire CCG are now pleased to advise that an extension of their contract with AWP has been agreed with effect from 1st March. This is designed to give both the CCG and AWP breathing space to agree a more permanent 2 year contract and negotiations for this are already underway.
During the period of the extended Wiltshire contract, all existing patients will be seen as they would have expected and no longer need to refer back to their GPs.
For the time being however, no new patients will be seen until current capacity issues have been resolved and these patients may wish to consult their GP again in the meantime. It is important to note that these arrangements apply ONLY to Wiltshire patients.
Therefore there will now be NO change if you live in Wiltshire and ARE already receiving treatment from the Wiltshire NHS ADHD service.
For the time being things are more difficult for adults living in Wiltshire who want to be assessed for ADHD. If you are in this situation, I suggest you go to your GP and politely but as clearly as possible state your reasons for wanting an assessment (written evidence is always helpful).
If you get turned down which seems likely at the moment, either ring or email the NHS Wiltshire Clinical Commissioning Group’s Patient Advice and Liaison Service (PALS) on 0300 123 2103 (live 9am – 5pm; answer phone outside of office hours) or WCCG.firstname.lastname@example.org and politely tell them you want to make a formal complaint. More information here
If you still cannot get an assessment, then ask your MP to write a letter on your behalf. Here’s a link to the Wiltshire MP’s
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February 13, 2016
From 1 April 2016, the Attention Deficit Hyperactivity Disorder (ADHD) service delivered in Wiltshire by AWP will be decommissioned. AWP have informed patients affected by this decision, and the Wiltshire Clinical Commissioning Group (CCG) have informed all their GPs.
Please note that this change affects the Wiltshire ADHD service only. It does NOT affect the Wiltshire Autism Diagnostic Service (WADS), the rest of AWP’s ADHD service, or any other service provided by AWP.
AWP has provided an ADHD service for adults living in Wiltshire, on behalf of Wiltshire CCG, since 2014. Over the last year, Wiltshire CCG and AWP have been reviewing the current ADHD service. AWP proposed a number of new clinical service models that complied with NICE guidelines, however at this time a decision has been taken not to extend the contract beyond 31 March.
Anyone who has concerns about how this change will affect them can speak to the Wiltshire PALS (Patient Advice and Liaison Service) . Contact details for Wiltshire PALS is available from Avon and Wiltshire Mental Health Partnership NHS Trust
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As a reminder to those who make commissioning decisions under the Equality Act 2010, the definition of a disability is a physical or mental impairment that has a substantial and long-term negative effect on someone’s ability to do normal daily activities.
The public sector equality duty (section 149 of the Equality Act) applies to public bodies and those carrying out public functions. It supports good decision-making by ensuring public bodies consider how different people will be affected by their activities. It also helps them to deliver policies and services which are efficient and effective, accessible to all, and which meet different people’s needs.
The equality duty requires public bodies to have due regard to the need to:
eliminate unlawful discrimination, harassment, victimisation and any other conduct prohibited by the Act;
advance equality of opportunity between people who are covered under the equality act and people who are not;
foster good relations between people who share a protected characteristic and people who do not share it.
Having due regard means consciously thinking about the three aims of the equality duty as part of the process of decision making, including the provision of a robust health and safety management system.
The UK Adult ADHD Network (UKAAN) will host its 5th Congress on Fri 22nd and Sat 23rd April 2016. This 2 day conference is entitled ‘Key Challenges and Practical Solutions – a Clinician focused conference on Adult ADHD’
There is growing recognition of the role of ADHD in adult mental health and the availability of effective clinical and psychosocial interventions. The conference will build on this growing expertise by providing a 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 questions relating to the management of ADHD in adults and will be relevant to clinicians 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, knowledge and expertise among health care professionals about people with ADHD as they grow older; and to provide a better understanding of the persistence of the disorder and the development of comorbid mental health problems. 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.
More information can be found on UKAAN’s website
We are currently updating our website and so far we have added new information to 3 of our Library pages, namely ADHD in the News, Research Articles, and Books. And we have also added new ADHD events to our Calendar.
And at long last we are in the process of adding new names, and updating contact details, on our lists of Psychiatrists, Psychologists/Counsellors, Occupational Therapists (a brand new list so we’ve only got one name at the moment), Coaches, and Support Groups. So if you would like to have your services added to our lists, or to have your details updated, you will find how to contact us on the relevant page. There is no charge for adding your details to our website because we are managing and maintaining this website as a free resource for the ADHD community.
When we have completed our lists of Help & Support, we will be updating and adding new information to the remainder of our pages so please bear with us.
And in the meantime please feel free to join us in our support forum where you can ask questions and chat with others about all ADHD matters.
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.)