June 2009

On Friday 17 June 2009 we received a letter from the Chancellor of the Exchequer saying that the Secretary of State for Health will by 1 April 2010, publish a strategy for the improvement of services for adults in England with autistic spectrum condition. The Autism Bill will place a requirement on NHS bodies and local authorities to act in accordance with this guidance. The Chancellor congratulates WaASP on its constructive dialogue with providers and commissioners in Worcestershire.

That same day, the Autism Bill received its third reading in the Commons, with government support.

Also on Friday 17th, WaASP met with Worcestershire -NHS (formerly -PCT) and they agreed a budget of £100,000 for adults with Asperger’s Syndrome for the balance of 2009/10, and the development of an ongoing programme of social and clinical services. WaASP and Autism West Midlands will be meeting with executives at Worcestershire-NHS to develop details, based on the previous 3aW research and using models developed in other areas such as Liverpool and Nottinghamshire.

We are sure you will agree that there should be more Fridays like this!

April 2009

WaASP officers have been invited to 11 Downing Street on Tuesday 5 May, for a reception marking World Autism Day. We will network with other groups and officials, to seek new strategies encouraging our county to persuade appropriate social and clinical services for our adult children who have Asperger's Syndrome.

January 2009

"The Director of Planning at Worcestershire Primary Care Trust has written to WaASP to say that she 'hopes tangible services will be in place by next financial year'. She has since clarified that this means that the PCT intends to provide appropriate services for adults with Asperger's syndrome during 2010. WaASP is looking forward to working with the PCT to formulate and further refine social and health-care models."

August 2008

Here is a summary of The Pressures from Above, to provide a service for adults with Asperger Syndrome (AS) in Worcestershire: -

ROYAL COLLEGE OF PSYCHIATRISTS APRIL 2006 ‘Psychiatric services for adults with AS’:

• “Particularly deprived are those individuals [with AS] who are too old for adolescent services and too able for learning disability services… Psychiatric provision needs to bridge this gap with a combination of training, better liaison between its specialities and the development of special interest and tertiary services…
• Commissioners should ensure that individuals [with AS] have access to expertise across a broad range of therapeutic approaches… [and]… ensure that the provider accepts responsibility for the care of the individual with the disorder.
• It should not be assumed that a service could absorb this patient group without specific planning and investment.
• It would be helpful if an autistic-spectrum disorders champion were identified within each health authority area.”

NATIONAL AUTISTIC SOCIETY OCTOBER 2006 ‘Taking Responsibility’: “Without appropriate provision many adults with AS will become socially isolated… suffer mental health problems and psychological breakdown. Lack of support services can lead to police involvement, prison sentences, admission to psychiatric units and trial-and-error drug treatments…these consequences could be avoided by a relatively low level of ongoing support.
Four major recommendations –

• Senior manager with responsibility for adults with AS
• Multi-disciplinary planning group
• Decision about which team will provide assessment of need
• Service provision"
  

DEPARTMENT OF HEALTH NOVEMBER 2006 ‘Better services for people with an ASD’:

• “The current position whereby some people ‘fall through’ local services… is unacceptable and contrary to the intention of government policy.
• The services … are best provided by local services that have the right skills and trained staff … [who] should focus on supporting each person’s inclusion in society on their own terms.
• Service provision should be determined and driven by a clear contractual framework and service provision with regard to ASD from PCTs and local authorities”

NICE (NATIONAL CENTRE FOR CLINICAL EXCELLENCE) letter to WaASP January 2008:

• “The Mental Health panel… reiterated their view that the management of autistic spectrum disorders in adults is a very important topic. It will therefore remain on their priority list… for the production of a clinical guideline”

And here is The Pressure from Below, to provide a service for adults with Asperger Syndrome (AS) in Worcestershire: -

WORCESTERSHIRE ADULTS ASPERGER SYNDROME PARENTS NOVEMBER 2005 “Notes on the epidemiology of AS with regard to adults in Worcestershire:

• “It is likely that … Worcestershire has in excess of 700 adults with AS.
• These adults are not included in the definitions of learning disability and mental illness as covered by Worcestershire statutory services”.

3AW ADULTS WITH AS AND AUTISM IN WORCESTERSHIRE NOVEMBER 2006:

• “No specific service is currently provided for [adults with AS]. Their conditions fall within the scope of neither learning disability nor mental health services. There are no professionals trained in AS.
• There is a clear need for Worcestershire Primary Care Trust to make provision for social and healthcare services for adults with AS.”

DR NICHOLAS FAIRBROTHER GP Trainee, reporting to Worcestershire PCT on a health needs assessment in Worcestershire.

• “There is a significant deficit in service provision for adults with AS living in Worcestershire.
• There is shortfall compared with both DoH recommendations and services currently available in other regions of the UK.”
  

LODEE DUDLEY Consultant: Health Needs Assessment advising Worcestershire Primary Care Trust March 2008: “Estimated prevalence of the ‘Read’ Coded diagnosis of Asperger’s syndrome:

This is likely to be an underestimate of the true number of cases given…:

• Lack of awareness of the condition
• Three practices reported excluding patients with suspected Aspergers syndrome but with no formal diagnosis
• A WaASP member with a diagnosis enquired at their practice and discovered they did not have a ‘Read Code’ assigned.”

DR ROS KEETON CHIEF EXECUTIVE WORCESTERSHIRE MENTAL HEALTH PARTNERSHIP NHS TRUST individual letter to parent of AS adult, July 2008:

• “[an AS adult] requires specialist services the type of which this Trust is not commissioned to provide”

To whom is the Pressure being applied?

WORCESTERSHIRE PRIMARY CARE TRUST: Joint Commissioning Strategy for Adult Mental Health in Worcestershire 2008-2013 June 2008:

• “Specialist Mental Health Care commissioning intentions
  3.4 Review provision of services for adults with AS”

What happens next? The position today:

Letter to WaASP from Lola Abudu, Director of Planning and Partnerships, WORCESTERSHIRE PRIMARY CARE TRUST, Joint Finance and Commissioning Subgroup – Mental Health, August 2008:
“The Asperger Syndrome Needs Assessment: -

• Some further work needs to be done looking at service models and options for providing the service. The Group is at an early stage of pulling together a work plan to address all 14 commissioning intentions in the recently agreed joint commissioning strategy for mental health.
• The work plan will contain key milestones and timescales for addressing the commissioning priorities in the strategy. A first cut of the work plan will be considered by the Mental Health Consultative Group at its September meeting, then the Joint Commissioning Group.
• We should [then] be able to provide a clearer view on likely timescales for implementation following these meetings.”

Worcestershire Primary Care Trust produced a draft Health Needs Assessment for adults with Asperger Syndrome, in the county. This agrees that there is a significant deficit in service provision compared with both Department of Health recommendations and services currently available in other UK regions.

The assessment says that there exists a need for the commissioning and implementation of such a service within Worcestershire. WaASP has met with PCT officials and is working with them to refine the structure for a proposed service.

November 2007

Worcestershire Primary Care trust confirms that a health needs assessment for adults with Asperger's Syndrome will be available by end March 2008. WaASP is a key stakeholder in this process and will expand upon its proposal for services'.

August 2007

WaASP Chairman and representatives are meeting executives from the budgeting department of Worcestershire Primary Care Trust, in August. WaASP's objective is to obtain agreement on a revised timeline for the provision of a budget and structure of service, specifically for adults with Asperger Syndrome in Worcestershire.

November 2006

A proposal has now been sent to the Chief Executive of the new unitary Primary Care Trust in Worcestershire. It outlines the background of neglect that families and adult Aspergers currently experience, and contains a fully costed structure for providing social and healthcare services. It is endorsed by Professor Simon Baron-Cohen of the Autism Research Centre at Cambridge University; by Pamela Yates the specialist in adult Aspergers support systems; and it is in line with the new report by the Royal College of Psychiatrists. We request that the service be provided with effect from the start of the new financial year April 2007.

January 2006

The steering Group set up by Worcestershire National Health Service Mental Health Trust met before Christmas 2005. It is now planning its research documents and questionnaires. It is hoped that a preliminary report on the need for services for adults with Asperger Syndrome in Worcestershire, will be available in early Spring 2006.

October 2005

WaASP met for the second time with senior personnel of the Worcestershire NHS Mental Health Trust. It was agreed that a Steering Group be set up, consisting of:-

• an AS parent
• an adult with Autistic Spectrum Disorder
• a representative from autism.west midlands
• a psychologist in mental health
• a psychologist in ASD
• a representative from Social Services
• representatives from the Partnership Trust and Child/Adolescent Transition groups
  
  The aims of the group will be to make proposals regarding the type of service required by ASD adults (those over 16 years) and the volume of service anticipated.
  
  The timing proposed is: -
  

'WaASP provided its epidemiology study on 23 November 2005. It forecasts between 500 and 900 adult Aspergers in Worcestershire in 2007 - see 'How many adult Aspergers?"

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August 2005 - Research News

Temple Grandin , an American with ASD, publishes ‘Animals in Translation'. She analyses animals' behaviour and its causes, and goes on to argue that the autistic mind is closer to the animals' than to the typical human's in terms of perception of detail. An ASD person has superior perception of detail; non-autistic people are ‘sub-autistic'.

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Professor Anthony Bailey of Oxford University holds the UK 's only medical chair dedicated to autism research, to which a new Research Fellowship is now added. Oxford 's MEG scanner which can record brain activity in real time, approaches completion. (Note: 12 current Oxford undergraduates have registered as having Asperger's.)

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Professor Patrick Bolton of King's College London and the National Autism and Related Disorders (at the Maudsley Hospital ) establishes his research aimed at exploring how symptoms of children with developmental disabilities such as Asperger's, are related to parental well-being and coping.”

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March 2005 Westminster- the All Party Parliamentary Group on Autism hears from the Director of the National Autistic Society about the problems resulting from misdiagnosis and inappropriate medication. The Minister of State Rosie Winterton replies, commenting on the importance of training for health professionals and the need to combat social exclusion.”

26 January 2005 Houses of Parliament – Joint Committee on draft Mental Health Bill listens to evidence of Richard Mills, Director of Research for National Autistic Society ……”People with … Asperger syndrome can often be prone to anxiety or depression ……there is an awful long way to go before we can be confident that everyone is receiving the right kind of help”.

30 November 2004 Houses of Parliament – Joint Committee on draft Mental Health Bill receives memorandum from the Association of Mental Health Advocates (paragraph 4.6, autism and advocacy) - …”It is important that the psychiatrist or other health professional has knowledge of the individual with autism being assessed… People with an ASD are falling through the gaps between mental health and learning disability advocacy providers…”

8 September 2004 House of Commons debate on adults with Asperger's Syndrome. Angela Browning MP suggests the introduction of a structure whereby non-specialists make contact with a list of authorised people with expertise. The Under-Secretary of State for Health Stephen Ladyman says he is in dialogue with the Royal College of Psychiatry and with the Department of Health both of whom will publish a report on adult AS early in 2005.

February 2004 Submission by the National Autistic Society to the Joint Committee on the draft Disability Discrimination Bill. It is recommended that the Bill include a disability in social action and communication.

October 2002 Department of Health Specialised Mental Health Services (adult) - definition no. 22. AS is described, with estimated epidemiology at the rate of 36 people per 10,000. Required range of services includes diagnosis, a treatment advice centre and a local training resource. Issues of importance include AS being ignored or declared ineligible.