Efforts under way in Dorset mean adults with Asperger syndrome no longer have to go without the support they need

Many adults with Asperger syndrome face inequalities in the health and social care treatment they receive. Many are losing out because of a lack of clear local strategies and pathways. In the meantime, some people are inappropriately referred into already overworked local mental health and learning disability services. This means that some adults with the syndrome can slip through the net.

In November 2006, the Department of Health published Better Services for People with an Autistic Spectrum Disorder, which clarified expectations of service delivery for those on the autistic spectrum. The guidance aimed to encourage people in the health and social care field to take action and address the issues facing those with Asperger syndrome. It identified the need for statutory services to work more closely together to develop strategies and plans to provide the appropriate care.

Support pathway

Dorset Healthcare foundation trust is working with primary care trust and local authority commissioners to develop and enhance care available to people with Asperger syndrome throughout the county. Clinical psychologist Karen Sutton is spearheading work to develop a multi-agency diagnostic and support pathway.

Dr Sutton says: "In Dorset, we are already well on the way to developing comprehensive services for children and young people. However, we need adult services to be developed in parallel so those reaching adult age continue to get care based on their individual needs and don't become overlooked because they are no longer eligible for children's services."

Work on the pathway started with an independent needs assessment jointly commissioned by most of the county's health and social care commissioners and the trust. This found pockets of good practice across the work of the organisations, including an Asperger's specialist social worker in the Bournemouth social inclusion team and a clinical psychologist funded part time by the foundation trust to develop services and provide diagnosis and consultation and supervision, as well as training to different agencies throughout the county.

Growing interest

Having a part-time psychologist dedicated to Asperger's has resulted in more professionals developing an interest in the syndrome and providing more services through existing teams. However, service provision is inconsistent across the county because many of these services are ad hoc and lack strategic commissioning to drive the right approach. This lack of consistency also means that for many there is no clear service pathway available to those with the syndrome (and their families) and access to diagnosis and assessment is erratic, with very little treatment or therapy.

The condition varies greatly and many adults with the syndrome do not need support from social or healthcare or other services. For others, practical problems with day to day functioning, sensory problems or social isolation result in risks to their health and independence, but these can be managed with minimal intervention.

In a small but significant minority of cases, people can become vulnerable and isolated, and become an extreme risk to themselves and others. A few may be involved in repeated inpatient admissions, or in the criminal justice system. In Dorset, the needs assessment found many adults require a low level of support to access employment and live independently and need guidance and help with social integration - but were not getting this, increasing the risk of deterioration and greater pressure on existing services in the long run.

"It's important the infrastructure and multi-agency liaison is in place to cater for people's specific needs," says Dr Sutton. "Many people with Asperger's also suffer from other health problems and these conditions need to be treated in addition to the syndrome."

Dorset Healthcare is now working in partnership with commissioners and other health and social care organisations in the county to develop a specialist team to treat adults with the syndrome, to improve inter-agency working and to enhance knowledge about it.

Raising awareness

"By carrying out this review, we have raised awareness of the needs of adults with Asperger syndrome among PCT and local authority commissioners and have together developed initial plans for a diagnostic and support care pathway that is currently under multi-agency discussion," says Dr Sutton. "The work has also clearly identified the role of practitioners in mental health teams, and a programme of training is being planned to enhance the skills of practitioners across all agencies. Some training has already taken place and a greater number of people with Asperger's are being seen appropriately within existing teams for diagnosis, social care needs assessment and therapy for mental health problems."

Carers and adults with the syndrome are now being supported by local health and social care agencies to develop two support groups across the county, with the aim of sharing good practice as well as access to better advice. A database will be built of all adults with the syndrome in the county.

STEP UP YOUR SERVICE

  • Complete a needs assessment which is jointly "owned" by all relevant agencies

  • Involve service users and carers at all stages of consultation and planning

  • Develop a clear referral pathway for assessment and treatment

  • Develop services that provide support to access employment, support to live independently and support to develop social coping skills and reduce isolation

  • Ensure the service is jointly commissioned with shared goals and service outcomes

  • Do not accept that this is a mental health or a learning disability problem - people with Asperger syndrome need and deserve help in their own right

  • Perseverance and determination are vital - never give up