Prior to 2012 there was no clear pathway for people who were not eligible for learning disability services to access an autism diagnosis in Wirral and Western Cheshire as per the Autism Act. Ian Davidson (Consultant Psychiatrist) and Clair Haydon (nee Jones) (Occupational Therapist) had extensive experience, knowledge and skills of working with adults with complex mental health needs, often with a variety of co-morbidities including autism and so offered to complete the backlog of assessments for Wirral and West Cheshire CCGs to see if we could improve access, experience and Clinical effectiveness of the pathway.
Please briefly describe your project, group, team or service, outlining what you do and why it makes a difference.
Prior to 2012 there was no clear pathway for people who were not eligible for learning disability services to access an autism diagnosis in Wirral and Western Cheshire as per the Autism Act. Ian Davidson (Consultant Psychiatrist) and Clair Haydon (nee Jones) (Occupational Therapist) had extensive experience, knowledge and skills of working with adults with complex mental health needs, often with a variety of co-morbidities including autism and so offered to complete the backlog of assessments for Wirral and West Cheshire CCGs to see if we could improve access, experience and Clinical effectiveness of the pathway. The work commenced in West Cheshire in 2012 with 6 cases seen, then spread to include Wirral in 2013 for 18 cases. Last financial year (2017/18) the team assessed 137 cases for Wirral CCG and 90 cases for West Cheshire CCG, with an additional approximate 100 cases from other contractual work. The development of the Service was iterative and was based on using a QI approach with numerous PDSA cycles. We designed the assessment process based on NICE guidance (CG142) and evidence based best practice. Over time feedback from people accessing the service, staff working in the service, those referring to the service, e.g. GP’s, and those commissioning the service was vital in reviewing and refining the assessment process and service delivery.
At the beginning of 2017 the service was aware of increasing financial pressures across the NHS and the increase in demand for autism assessment, meaning waiting lists were growing. The service discussed this with commissioners and agreed to re design the pathway to enable almost twice the number of people to be seen for the same cost envelope, whilst not having an adverse effect on the clinical effectiveness of the Service. This change involved the development of a whole new assessment process including the introduction of a pre – assessment questionnaire. Co-production was key to this change to optimise the value in the questionnaire whilst not placing unnecessary burden on people accessing services and to reduce the risk of duplication and associated frustration to optimise user experience and engagement. It was also essential to involve all team members in the change and ensure we monitored quality measures to evaluate and measure the outcomes of the model. The service aim remains to offer a clear and timely pathway for diagnosis of autism, that is accessible, of high quality, offers the person accessing it a positive experience, clear opinion and recommendations and makes best use of the available investment and resource. Key to this was recognising that autistic adults without an Intellectual Disability are a marginalised group.
Autism is thought to affect 1in a 100 people and Autistica have identified that people with autism without an Intellectual Disability die on average 16 years earlier than the general population and are nine times more likely to die of suicide. Autism.org say that 70% of autistic adults report that with more support they would feel less isolated and at least one in three are experiencing severe mental health difficulties due to the lack of support. Yet across the country very few specialist services are commissioned for autistic adults intellectual disability post linguistically or with an established diagnosis. Autistic people diagnosed in adulthood often report that they have lived their lives feeling like an outsider, like they didn’t fit in or that they were wrong, so often have very low self-esteem and confidence. It is clear that the strengths needs and aspirations of this marginalised group wasn’t being widely heard and understood and although we recognised that we were only responsible for providing a diagnosis, we wanted to ensure that we shared their voice with our colleagues both internally and externally, feeding into local autism strategies, national strategy and research, and CWP Service Improvement. We are clear that if we are the only specialist service that an autistic adult may see, that our diagnostic assessment is not just a “yes” or “no” opinion but focuses on the “so what”, reflecting back what they have told us, demonstrating we have listened, stating which autistic traits affect them and how, and highlighting their strengths on which they can build upon to achieve their aspirations.
What makes your service stand out from others?
-NICE compliant, multi-disciplinary and locally offered -provides psychiatric overview and opinion to identify any co-morbidity, reduce diagnostic overshadowing, and if someone is not found to have autism to identify if there is any other mental health need and refer on for intervention if necessary. -provides an Occupational Therapy assessment to identify the person’s level of functioning and make specific recommendations to improve all functioning. -The assessment process is co-produced and has employed a service user to create a video of what someone can expect from our service on our website to reduce anxiety and optimise engagement for those coming for assessment.
All letters, questionnaire questions from the service and a post diagnostic pilot course were also co-produced. -“nothing about you without you” the draft assessment report is sent to the person accessing the service for accuracy, correction, clarification and discussion before going anywhere else so the person is assured the information about them is correct. – The assessment involves the person and a chosen informant who are interviewed separately but simultaneously so that each interview slot allows for double interview time. -The assessment report covers the person’s strengths, needs and aspirations, if they are autistic what that means for them and their supporters, and if they are not, an opinion and recommendations of what their needs may be and how these may be addressed. – The service operates using the same electronic Clinical records as the mental health services, ensuring all available information is considered when formulating the assessment opinion and the service’s notes and risk assessments (including advice on individualised reasonable adjustments) are accessible to wider teams if that person is known to them or presents in crisis. -At the post diagnostic review with the Occupational Therapist, the person is offered time to discuss the opinion, ask questions and access specific advice on what reasonable adjustments may be for them. They are provided with advice on what voluntary services are offered locally and how to access them, how to access a Care Act Assessment from the local authority if they choose to and an autism alert card and hospital passport to maximise engagement in the community and their engagement with healthcare services. –
There is a hub of expertise in Autism in CWP and a “go to” for staff to access specific advice or information to support autistic adults in their services. -The service has developed mandatory autism training for the Trust and over 85% of CWP workforce are trained. -The service has set up an Autism Workstream to improve the experience of adults accessing any CWP service, educating staff on reasonable adjustments and how they may plan their service delivery to minimise distress to an autistic adult e.g., communication, environmental factors.
The workstream is also looking to replicate the dynamic support register for autistic adults open to secondary care mental health services to facilitate the use of effective care and treatment reviews to prevent where possible the admission to hospital or any delay to being discharged from hospital. -The service feeds into local autism strategy groups and national strategy and is leading on an autism workstream for the North West Operational Delivery Network for 3 Transforming Care Partnerships and completed a business case demonstrating that Autistic adults without a Learning Disability should not be added on to existing Learning Disability Service Specifications but should have dedicated evidence based and clinically effective services for their specific ongoing needs. -The service contributes to National Research to improve our knowledge on the needs of autistic adults without a Learning Disability to better inform the development of health and social care services.
How do you ensure an effective, safe, compassionate and sustainable workforce?
The staff in the service are encouraged to access autism specific learning opportunities outside of the Trust and attend special interest groups and conferences. The staff receive regular (monthly) ClInical and managerial supervision and there is opportunities for reflective case discussions and peer support. We have employed people with lived experience within the team and have staff with strong links to autism (e.g., a relative, child). We value all people within the service and all service changes and developments involve all stakeholders.
Who is in your team?
Consultant Psychiatrist, 1B8 strategic lead/lead OT, Team manager, 1.6 B6 Occupational Therapists, 1 B2 administrator, 1B3 Team Secretary
How do you work with the wider system?
As described we work closely with Commissioners in ensuring the service meets contractual obligations. We work closely with our colleagues in CWP supporting colleagues to utilise reasonable adjustments to improve the access and outcomes for autistic adults accessing CWP services. We work closely with the autism leads in the local authorities to contribute to local autism strategies. We provide awareness sessions about the pathway and needs of the autistic adults to GPs and are developing strong links with the third sector including care providers for autistic adults, community projects and charitable organisations. We are linking in with 2 charities that provide autism hubs in the community to offer our clinic from there so they can access the drop-in facilities and wider support of the Hub and we can offer professional advice and sign posting for people with more complex needs on an ad hoc basis.
Do you use co-production approaches?
All of the Service design and delivery is based upon feedback from people who have accessed the service. We have had a number of people who have consented to ongoing email contact whereby any new change can be sent out for comments before implementation and we have and continue to have paid and voluntary experts by experience leading projects and consulting on developments. Having experts by experience helps to keep focussed on what the priorities should be ie, the person being at the centre of all we do, when designing and delivering the service and their involvement in our website and CWP strategic work has been invaluable.
Do you share your work with others?
We have shared our work and national and international conferences. We have delivered a workshop for the RCPsych Rehab Faculty annual conference and advocate for the strengths needs and aspirations of autistic adults at every opportunity. Ian Davidson is the RCPsych Autism Champion and the service’s medical lead, and is heavily involved in informing national policy and strategy and is working on the national STOMP group as the autism expert. We have developed our website in recent years and have plans to improve intranet resources on autism for our staff. We are actively engaging with charities and CWP commissioned a consultation from HACT where we specifically sought support for developing housing options for autistic adults with more complex needs locally.
What outcome measures are collected, how do you use them and how do they demonstrate improvement?
We keep a database to collect a variety of data on those who have accessed our service to improve local knowledge and understanding of the needs of autistic adults and we feed these into the local authorities Joint Strategic Needs Assessment and SAF. We receive a monthly automated PREMs and address these as a team. We have regular peer meetings to review the service, including discussing clinical and operational issues, QI work and key performance and quality indicators. The autism workstream organises clinical audit and research projects and oversees wider service developments. Our main achievements have been that we have achieved the objective of offering a clear, accessible, clinically effective and well publicised diagnostic pathway. We have enabled almost double the amount of people to be seen for the same cost envelope and have reduced some waiting times in areas by 1 year. Due to the expansion and development of the team, we have been able to increase skills and knowledge in Autism in CWP, offer bespoke training and advice and the workstream informs wider CWP, local and national service development and strategy.
Most importantly people who have accessed the service have reported that by having a diagnosis from us has helped them make sense of their life, understand what traits they have, what reasonable adjustments may be helpful and that they do have strengths and the key to their success is to recognise and build upon these. People often report the process of assessment and diagnosis as a “relief”, as valuable because they feel listened to and helpful in accessing reasonable adjustments in education, employment and healthcare services, hopefully minimising the mortality gap and promoting social inclusion and mental wellbeing.
Has your service been evaluated (by peer or academic review)?
No the service hasn’t been evaluated.
How will you ensure that your service continues to deliver good mental health care?
We are involved in ongoing work and discussions with commissioners as part of transforming care to continue to look at the needs of autistic adults without a Learning Disability as distinct from Learning Disability services. We work to ensure that autism is not a diagnosis of exclusion where a co-morbid health need requires specialist secondary care input, including in mental health services and are actively looking to design a post diagnostic pathway and pathway for autistic adults with an existing autism diagnosis to access early intervention with a health or social care need, to prevent deterioration/crises and the need for more intensive health or social care input in the future. Similarly, the service is looking at implementing a dynamic support register with Commissioners to prevent those with known autism without a Learning Disability unnecessarily being admitted to hospital with a mental health need and to inform housing/support provider development as an alternative to hospital and to facilitate discharge. The service has a standard operating procedure clear service specification and is well established. It is not based on any one practitioner and has clear leadership via CWP learning disability and neurodevelopmental care group, so it has an excellent governance structure and resilience.
What aspects of your service would you share with people who want to learn from you?
This service started small and grew in response to demand and local need. Relationships with all stakeholders has been key and service user feedback and involvement has being invaluable in the service developing and offering an assessment process that receives overwhelming positive feedback. The team has had to change and adapt and at times this could feel stressful and challenging. Using PDSA cycles and a QI approach has supported the team to try and test ideas and ensure what we offered is effective. This has empowered team members to develop their own projects working alongside service users. The team is very caring, compassionate and committed to making positive change and have demonstrated creativity and innovation in providing a service that does make the best use of the resource available.
How many people do you see?
Over 300 adults per year
How do people access the service?
The CCGs have stipulated a screening tool which is the completion of an AQ10 where they must score 6 or above or if lower a good rationale as to why this score does not reflect the person’s functioning/need. This along with a reason why someone is seeking/referring for an autism diagnosis and why it is thought the traits are long standing. Referrals can be received via post or email and from GP or other CWP staff member.
How long do people wait to start receiving care?
This depends on which locality they are referred from and contracted activity and does not exceed approx 6months.
How do you ensure you provide timely access?
Daily triage of referrals and sending of questionnaire. Checking if questionnaire has not been received back. Checking that they would be agreeable to attend at short notice if there is a cancellation and ensuring sufficient workforce and capacity to meet demand.
What is your service doing to identify mental health inequalities that exist in your local area?
As mentioned we believe this group is a marginalised group and so we are actively working to address the health inequalities and improve health, social and community support for these individuals. Our data informs each local authority jsna and we are contributing to National Research to improve the academic evidence base for the development of specific services.
What inequalities have you identified regarding access to, and receipt and experience of, mental health care?
People with a diagnosis of autism can be excluded from mental health services due to diagnostic overshadowing and them not being commissioned to work with people with autism where autism is the primary need. We utilise a psychiatrist in our assessment process so in our opinion it is clear what are autistic traits or other mental or physical health issues and how these issues could be addressed
What is your service doing to address and advance equality?
We advocate for the people who access our services feeding into local, regional and national strategy. We share our work at conferences, provide training and awareness sessions internally and externally, and actively challenge stigma and discrimination. We provide the person with an autism alert card and hospital passport so the responsibility is not on them to explain their diagnosis, needs or reasonable adjustments especially if they have communication/social interaction difficulties. We want autistic people to feel equipped to access the community and to get their health needs met by being able to access the doctor, dentist or mental health service with minimum distress, to close the mortality gap. Most importantly we want to highlight people’s strengths, build their confidence and self´esteem and therefore improve their resilience. Our service and the messages we give to all the people we advise on autism is based on a strengths led approach.
How do you identify the needs of a person using the service (such as their physical, psychological and social needs)?
Aq10 screening tool, co-produced questionnaire and interview based on the RCPsych Autism interview.
How do you meet the needs of people using the service and how could you improve on this?
We have explained how we meet the needs of those accessing services, input obviously there is a lot more work to do especially for people post diagnostic or with an existing diagnosis where their circumstances may have changed, e.g. a relative who supports them can no longer support them for whatever reason. This group of people are unlikely to ask or seek out help and their health, both physical and mental may have reached crisis point with irreversible damage if intervention is not provided early enough. We are hoping to address this and other issues as part of the operational delivery network across the North West representing the 3 Transforming Care Partnerships.
What support do you offer families and carers?
A chosen informant which is often a spouse or family member is included in the assessment and post diagnostic review. We offer specific advice to family members and sign post where they may go for further support. We are working on putting webinars on the CWP website on autism and resources for people accessing the service and their families/supporters.
Brief description of population (e.g. urban, age, socioeconomic status):
This service works with adults (16+ in some localities) from all 5 CCGs in Cheshire and Wirral and can do any ad hoc bespoke assessment consultation on request from any referrer. The focus of the service is on people who do not meet the criteria for learning disability services. Regressions from across our patch and which varies in geography (rural and urban) and socio-economic status.
Size of population and localities covered:
CWP population is 1.1 Million across 1400 square miles.
Commissioner and providers
Commissioned by (e.g. name of local authority, CCG, NHS England): *
our core contracts are commissioned from Wirral, West Cheshire, South Cheshire, East Cheshire and Vale Royal CCGs.
Provided by (e.g. name of NHS trust) or your organisation: *