Health Priorities for people with Autistic Spectrum Disordersconditions

1
Health Priorities for people with Autistic
Spectrum Disorders/conditions

• Ann Le Couteur
• Professor of Child and Adolescent Psychiatry,
• Member of External Reference Group (Health)

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National drivers

• National Audit Office review of services for
  adults June 2009
• All Party Parliamentary Group on Autism (APPGA)
  Transition to adulthood inquiry June 2009
• Autism Bill
• NICE ASD guideline for children and adoescents
  (2009- 2011)

3
DH Ext Reference Group

• Formed end of 2008
• Led by Mark Lever, NAS
• Initial report of Ext Ref Group for the Adult
  Autism Strategy for England March 2009
• 5 work streams
• Choice and control
• Training
• Health
• Employment
• Social inclusion

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General principles for the strategy

• Human rights ASD
• Reasonable adjustments
• Involvement of people with ASD in developments
  policies that affect them wherever possible the
  design delivery of training programmes

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DH Ext Reference Group (Health)

• Chair Juli Crocombe (psychiatrist LD/ forensic)
• David Shamesh (LARM member- adult on the
  spectrum)
• Carol Rutherford (Autism in Mind, parent)
• Amanda Batten (NAS)
• Ian Hall (LD psychiatrist)
• Ian Ensum (psychologist, Bristol)
• Kobus Van Rensburg (psychologist, Northampton)
• Ann Le Couteur (child and adolescent
  psychiatrist)
• Kate Hardy (DH, Project manager of the autism
  strategy
• Sarah Lambert (DH, secretariat to the ERG)

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Health Vision

• Adults with an ASD are able to access a needs-
  and skills-based assessment (including diagnosis)
  from suitably- qualified professionals from a
  multi-agency team. All adults with an ASD get the
  health services and support they need at the
  place and time they chose.

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Health this would mean that

• MD/MA assessments diagnoses in every local
  area
• post- diagnostic support well integrated
  services
• accessible healthcare and mental health care
• need for training of all staff

8
Health what things are like now?

• Diagnosis post-diagnosis support
• GPs local mental health providers
• Lack of capacity
• No formal care pathways for adults with ASD
• Health care service inequalities
• Reasonable adjustments lack of understanding of
  co-occurring conditions
• Needs cut across traditional health care
  services. Indivs may fall through the gap
• Mental health
• Misdiagnosis lack of preventative services
  lack of regional specialist services

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Key recommendations

• Local leadership, local hub (jointly funded) and
  regional team
• Data collection and strategic planning
• Diagnosis post diagnosis support
• Accessible healthcare
• Training
• Evaluation accountability
• DH Care quality commission develop standards of
  care for people with ASD
• Research

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DH Ext Reference Group

• Launch of strategic consultation 27th April 2009
• Agreement for publication of ERG report (March
  09)
• Next steps for ERF groups (DH approach)
• Acknowledge constraints
• Refine absolute priorities
• Detailed work up with examples of good practice
  case studies etc
• Consultation ends September 2009
• Ext ref group will finalise their report later in
  2009

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Autism consultation- next steps

• Consultation process
• Stage 1
• People with ASD
• Their carers
• Those with professional interest incl ERG report
• Stage 2 nine Regional events
• On-line community
• ERG final report

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Concluding comments

• DH consultation
• unique opportunity to contribute to the process
  of raising awareness
• Implementation
• No new monies
• emphasis on mainstream delivery raising
  standards to a minimum baseline idea of jointly
  funded ASD Hub unlikely
• Importance of Regional leadership (regal
  directors in social care)
• Register as Stakeholders for NICE guideline
  documents

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• Thankyou!