1. Emma Dunn

2. Presentation outline  Project Background  Project Aims  Work Completed  Key Findings and Recommendations  Questions?

3. Project Background  Mental Health contacted by AS adults  East Lancs PCT commissioned project “To investigate and provide evidence of AS adults support needs and experiences of the mental health service”

4. Project Aims  Investigate the training needs of mental health practitioners in East Lancs PCT with regards to ASC’s.  Establish a Service User Feedback Group of adults in East Lancashire who are seeking a diagnosis or have received a diagnosis of Asperger Syndrome. The group’s purpose being to inform the project.  Assess the needs of adults with a diagnosis of Asperger Syndrome or High functioning autism in East Lancashire with regards to access to diagnostic assessment and mental health services.  Research into different models of provision across the country for adults with Asperger Syndrome.  Aim to improve the experience and support pathways to diagnosis for adults seeking or who have a diagnosis of Asperger Syndrome.  Develop an information resource for adults with Asperger Syndrome.

5. Work Completed  To achieve these aims the research aspect of the project was conducted in the following stages: Analysis of staff training needs; Gathering of service user feedback; Consideration of models of provision elsewhere along with previous research.  Service User involvement Feedback Group Tuesday Night Drop-in Sessions

6. Key Findings & Recommendations  Staff Training Needs Relating To ASC’s 70% little or no knowledge about autism; 77% felt would benefit from autism awareness training. 27% received some autism awareness training. Of these, 70% felt they required further training in how to communicate and work with ASC’s.  Recommendations Ongoing structured, reliable autism awareness training with monitored outcomes. Additional job specific training available where required. Follow-up specialist support available staff can access around working with ASC’s.

7. Key Findings & Recommendations  Service User Experiences And Opinions Having to battle to receive any help/support at all; Perceived apathy from some professionals. Not feeling believed, listened to, understood or having support needs taken seriously. SU’s & Staff - assessment or specialist support blocked by refusal to fund confusion regarding referral as no pathway. Environment (busy waiting rooms, fluorescent lighting, loud sudden unpredictable noises) a barrier for many. The feeling from service users seems to be that they are excluded from accessing mental health services, with support available only at the point of crisis.

8. Key Findings & Recommendations  Recommendations A clear care pathway for adults with ASC’s. Post-diagnostic support, signposting to relevant services and community care assessment referral. Access to low level support including: respite from daily life; social opportunities; vacations; daily living support for people with ASC’s. Specialist support and advice for staff so equipped and supported to work with this client group. More flexibility with environment and location of appointments - reasonable adjustments.

9. Key Findings & Recommendations  Potential Service Models And Pathways Most effective service model a ‘managed care pathway’ team in Liverpool provides support, advice and diagnostic assessments to other statutory services. Similar Combination Model previously proposed by Lancashire Care Foundation Trust (2008) – small team provides needs assessment, diagnosis, management plans and advice for local services. Only work directly with the service user where diagnosis and management planning is beyond the scope of local services. Service user feedback also appears to support this type of service model.

10. Key Findings & Recommendations  Recommendations Combination service model, referred to also as a ‘managed care pathway’ model appear to be most effective option. Small specialist multidisciplinary team able to provide: assessment and diagnosis, needs assessment, management plans and advice for local services.

11. Statutory Guidance  The Adult Autism Strategy for England  Released December 2010  Overlaps with project aims and findings: Staff training Diagnosis and identification Service provision modelling

12. Any Questions?  Emma Dunn  emma@actionasd.org.uk emma@actionasd.org.uk  www.actionasd.org.uk www.actionasd.org.uk  01282 415455