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Type and Title of Submission


Title:

Setting up Nottingham city's Asperger's syndrome service

Description:

Nottingham City Asperger Service is a multidisciplinary diagnostic assessment and support service for adults with Asperger syndrome living in Nottingham city.

Does the submission relate to the general implementation of all NICE guidance?

No

Does the submission relate to the implementation of a specific piece of NICE guidance?

Yes

Full title of NICE guidance:

CG142 - Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

Is the submission industry-sponsored in any way?

No


Description of submission


Aims and objectives

We aimed to develop a small, specialist Asperger's service that a) undertakes formal assessment and diagnosis and b) develops (and supports short term) bridged coordinated packages of support and enablement for people who would otherwise not receive a comprehensive service - including the meeting of mental health needs as they arise.

To provide the service, a small specialist team was needed to operate creatively and imaginatively across pre existing service boundaries, whilst growing local expertise.

Harnessing existing expert knowledge, the service was led by the Community Learning Disability Directorate, partnered with colleagues from the local Adult Mental Health Directorate and an expectation to lead towards a formal integration with City Local Authority partners as the service developed.

This small specialist team required a multi disciplinary and professional make up to skilfully permeate traditional organisational boundaries whilst also bringing the required skills to bridge the gap of service provision.

Context

According to the Office of National Statistics (mid-year estimates 2006) the population of Nottingham City was 286,400, of which 196,600 were adults (16 - 64). On the currently accepted estimate of 1%, this estimated a Nottingham City prevalence of 1,966 with or suspected as having an autistic spectrum disorder. Of these, the majority would not have a learning disability and be classified as having Asperger's syndrome (or high functioning autism).

Over the 2 years preceding the setting up of this service, the Trust had established a working party identifying service gaps within the Trust for clients with, or suspected of having, Asperger's syndrome. It was accepted that with more resources, existing personnel within the Trust had the skills and commitment to provide more comprehensive services to this often complex client group. However there were very limited local resources for diagnostic assessment and subsequent support and enablement for people with Asperger's syndrome. Consequently people had to travel to out of area services, at significant cost to the individual or PCT, with little or no post-diagnostic support

Methods

The team became operational in April 2009 with two team members in post. Over the course of the first year the full multidisciplinary team has now come into post and we are now at a full compliment. The team consists of: Autism Spectrum Disorder Nurse Consultant (clinical lead) 1.0 wte, Asperger Liaison Nurse 1.0 wte, Consultant Psychiatrist 0.4 wte, Clinical Psychologist 1.0 wte, Speech and Language Therapist 0.6 wte, Occupational Therapist 0.5 wte, Inclusion Support Worker 1.0 wte, Team Secretary 1.0 wte.

All posts went out to external advert as it was clear that there was not the capacity within the directorate to provide this service. We also wanted to widen the staffing to include people with experience of working in a mental health setting to bring differing perspectives. The finance was provided by Nottingham City PCT and although we spent some time looking at other models of service provision nationally there did not appear to be anything that we could use as a standard model.

The types of support offered and delivered within the service included: Post diagnostic support, Communication support, Social skills training, Sensory integration therapy, Daily living skills training, Psychometric assessment (e.g. intellectual functioning, executive functioning, social cognition), Psychological interventions, Delivered by the Liaison Nurse or Nurse Consultant, Delivered by the Clinical, Psychologist (& trainee clinical psychologist on clinical placement within the team), Interventions related to offending behaviour, Psychiatric assessment, Medication advice and monitoring, Support in accessing the community to reduce social isolation, Support with accessing welfare services, Support & liaison to other services. Signposting to other services and Teaching and training to local care providers.

See further Methods information here.

Results and evaluation

-147 referrals were received between 1st April 2011-31st March 2012. This represents an increase year on year since the development of the Service in 2009. Of these, 108 referrals were for diagnostic assessment, again representing an increase in demand.
-For those referred for diagnosis, full multidisciplinary diagnostic assessment provided with appropriate locally delivered specialist post diagnostic support.
-Individually tailored packages of specialist support were delivered as needed, including psychological therapy, sensory integration, social skills learning, communication skills learning, social inclusion, nursing support and liaison, occupational therapy, psychiatric consultation and treatment.
-All clients were seen within 8 weeks, all contact targets set for the Service were met. This ensures appropriate, timely support for this often difficult to reach client group was provided.
-Training targets were also achieved, which enabled awareness raising of autism spectrum conditions, awareness of the diagnostic pathway, and access to appropriate support services as required.
In addition to providing a range of multidisciplinary assessments and interventions, the Service has developed a number of innovations to further expand knowledge and supports for adults with Asperger syndrome: In collaboration with a local media company, we developed an awareness raising film called 'Being Different: Living life with Asperger Syndrome'. Adults with Asperger syndrome illustrated their lives, alongside parents and partners, describing their everyday experiences of family life, relationships, employment, education and leisure. The DVD was formally launched on the 24th January 2012 at an event held at Nottingham Contemporary. The event was attended by over 60 service users, carers, statutory and voluntary sector personnel. The DVD has also been made available to the public following a local press release, and has been positively received.

Key learning points

Partnerships with other agencies are essential as the small team needs to be able to move people through the service in a timely manner ensuring that they have the ongoing support needed.

Diagnosis is a vital component of the service however a thorough assessment that highlights strengths and needs of the individual should to be done on a multidisciplinary basis.

Post diagnostic support allows the opportunity for the individual and their families to explore the impact of the diagnosis and to develop strategies to support communication.

Clear leadership is required to ensure that the team continues to review the role and function and remains adaptable to the needs of the client group.

Although we did not experience any real barriers to implementing the service we needed to change the perception that the service replaced all other services that the individual received such as Adult Mental Health or Forensic services. It took lengthy negotiation to enable us to work jointly to support the individual and to prevent them from being discharged from other services.

Have very clear criteria for referral and a system for doing this from the start of the service. This needs to be communicated to all agencies to allow for clear communication and a shared understanding of the role of the service.

Nottingham City Asperger Service continues to grow and develop. Demand for the Service rises year on year. Given the increased national profile of autism, it is perhaps not surprising that more adults come forward for diagnosis. We expect this to continue. In the majority of cases, diagnosis of Asperger syndrome transforms lives and is an enabling process. Access to specialist supports through our Service directly, and training and consultation with other local services also enables the development of fulfilling lives for adults with Asperger syndrome.

View the supporting material

Contact Details

Name:Jackie Dziewanowska
Job Title:ASD Nurse Consultant
Organisation:Nottinghamshire Healthcare NHS Trust
Address:Highbury Hospital, Highbury Road, Bulwell
Town:Nottingham
County:Nottinghamshire
Postcode:NG6 9DR
Phone:0115 8542207
Email:Jacqueline.Dziewanowska@nottshc.nhs.uk
Fax:0115 8542204
Website:http://www.nottinghamshirehealthcare.nhs.uk

 

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This page was last updated: 07 June 2012

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Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.