Mersey Care (Non-LD) ASD Service (Liverpool and Sefton Asperger Teams) – HC – #MHAwards19

The Mersey Care (Non-LD) ASD Service operates as a ‘Managed Care Network’ where the service take on a co-ordinating role ensuring communication and continuity between services, allowing individuals to be referred into services within the network that most suits their needs. The service aims to provide a specialist support service for people with Asperger Syndrome, adopting a person-centred approach that assists individuals with the social and communication barriers that they may face in everyday life.

Highly Commended - #MHAwards19

Co-Production

  • From start: Yes
  • During process: Yes
  • In evaluation: Yes

Evaluation

  • Peer: No
  • Academic: No
  • PP Collaborative: Yes

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Please briefly describe your project, group, team or service, outlining what you do and Why it makes a difference

The Mersey Care (Non-LD) ASD Service provide community-based services for adults with non-LD ASD (Asperger syndrome) diagnoses in the Merseyside region. The service provides services for those aged 18 and upwards. Asperger syndrome represents a neurological condition that affects the way people with the condition take in, store and use information.  Asperger syndrome can also impact on the way people interact socially with others, and on sensory sensitivities. Our service provide both individual (1:1) and group interventions. Such interventions offer awareness and acceptance for people with Asperger syndrome and their families from both professionals and the wider community. The teams provide assessment and diagnosis; advocacy; crisis intervention; support to access other specialist services; support to access social groups; provision of support into mainstream / established services; and support with transitions from Child and Adolescent to Adult services.

The Mersey Care (Non-LD) ASD Service operates as a ‘Managed Care Network’ where the service take on a co-ordinating role ensuring communication and continuity between services, allowing individuals to be referred into services within the network that most suits their needs. The service aims to provide a specialist support service for people with Asperger Syndrome, adopting a person-centred approach that assists individuals with the social and communication barriers that they may face in everyday life.

Support and guidance is offered for carers including regular awareness training, information and advice, contact with other carers and specialist support in caring for their relative, access to Community Carers Assessments if required, support to assist in the implementation of change and intervention, access to a named health professional, advice on benefits and sign posting to other relevant health services.

The service works with local services including schools and colleges, housing associations, primary healthcare services and other specialist mental health services, such as those for people involved in the criminal justice system and those receiving support form mental health and alcohol and substance misuse services.  This approach promotes access to integrated health, social care and community services.

The service offers assessment and diagnosis of Asperger syndrome (Autism Spectrum Disorder), followed by post-diagnostic interventions which range from 1:1 clinical input (e.g. Clinical Psychology; Nursing; Occupational Therapy) and also group interventions (12 week post-diagnostic programme). The service also offers a Social Inclusion Hub which provides socialising and networking opportunities for our service users.

The Service works across Merseyside (Liverpool and Sefton) from two bases (one in Norris Green, Liverpool; one in Southport, Sefton) and whilst both teams are separately commissioned by Liverpool; Southport and Formby; and South Sefton Clinical Commissioning Groups resources are ‘shared / distributed’ across the footprint so as to enable the most appropriate resources to be targeted where there is most need (e.g. one Occupational Therapist works across the footprint where input is required). This enables the service to provide NICE-recommended standards of care for all those who access our services.

At the heart of our service is a commitment and passion for co-production. As such we have helped both develop and continue to support our service user representative group (‘Aspirience’ in Liverpool; ‘Aspect’ in Sefton) and our local Carers groups.

Aspirience is a service user led group who provide feedback and input to the running of the service. Aspirience’s members have lived experience of Asperger syndrome (AS) so offer a unique perspective. Their main objective is to educate and raise awareness of Asperger Syndrome in order to improve services for people with AS across Merseyside. Asperger service staff meet with Aspirience on a weekly basis, and our management team meet with the group once a month.

The Carers groups (Liverpool and Sefton) are two independent groups of carers who meet regularly in the capacity of both offering mutual support and understanding to each other, to lobby for the development of services across Merseyside for those with AS and their networks of support; and to work alongside the Asperger service and Aspirience to co-produce services.

The Asperger Service, Aspirience, and the Carers Support Group in Liverpool have together created the ‘Asperger Collective’ to develop initiatives that enable our service users and carers to shape and provide services themselves. One such service is our Drop-in service which provides information, training and a place to meet others with AS.

This co-produced collaboration also followed the principals of the Triangle of Care. The Drop In’s aim is to promote wellbeing, and to be a preventative intervention for mental health difficulties associated with Asperger’s, social isolation and carer burden consistent with Department of Health guidelines for service development. The Drop-In’s sustained high attendance suggests that it is meeting the needs of the attendees.

 

What makes your service stand out from others? Please provide an example of this.

Our (non-LD) ASD service puts the people who we support at the heart of everything we do. Our Service is delivered by a highly skilled, experienced and motivated workforce, and our values of rights, respect and responsibility are core to the delivery of our service. We are committed to the philosophy of seeing the person, meeting the need and challenging the stigma. Our multi-disciplinary Asperger Service provides a specialist health service for people with Asperger Syndrome, and we adopt a person centred approach by using creative and innovative interventions (alongside genuinely co-produced working practices in collaboration with our service users and their networks of support) to assist our service users to be able to lead ordinary lives whilst addressing the social and communication barriers that they may face. Our Asperger Service supports the process of people rebuilding and developing important elements of their lives – purpose, social relationships, work, recreation and activities of the spirit. Our service focuses on the development of a valued role – a place to fit – within the community and within oneself.

We acknowledge that the service we provide is not a ‘cure’, but a process of supporting our service users to often adjust their attitudes, beliefs, directions, roles and visions in life, in order to establish a positive self-image that is hopeful, involved and self-guided.

Our ‘Asperger Collective’ drop in service is a real example of our commitment to co-produced practices, and how such an approach can make a real difference to our ‘stakeholders’ in the local communities we serve.

The Asperger Collective project, the Drop-In, provides a warm and welcoming space for service users and carers to access services, participate in activities of interest, and to find out more information about what is available in their local communities. I believe the most innovative aspect of this project is that the Drop-In is a perfect example of truly collaborative working practices between people with ASC diagnoses and their networks of support, which whilst supported by local statutory services (e.g. Mersey Care NHS Asperger Services) has been devised, developed and run solely by those who know exactly what they want and need from such a resource. Together, a truly collaborative partnership of individuals was formed who recognised the ‘gaps’ in service provision for people with Asperger syndrome and their supporters in Liverpool, and were able to develop this project.  As a result, ‘Asperger Collective’ have together sourced a venue in Liverpool City Centre (the Quaker Meeting House) which has given us a real presence in the heart of a city aiming to become the UK’s first ‘autism friendly city’.

‘Asperger Collective’ has employed high levels of creativity in the development of the Drop-In Service. The ‘Asperger Collective’ has minimal funds (Local Authority funding for venue and NHS funding for refreshments and staff) and so beyond this all activities and specialist speakers are funded by fundraising which is generated by the ‘Aspirience’ service user group and the Asperger Carers’ Group; both of these groups also staff the Drop-In, provide introductions and support for those who access the events, and publicise the resource both locally and regionally. ‘Asperger Collective’ have given numerous hours for the project’s development, have publicised this independently throughout the Merseyside region, have sourced all regular speakers and activities, and have fundraised in order for the project to become a fully sustainable resource. ‘Asperger Collective’ have successfully lobbied the Local Authority for funds to provide premises and at regular meetings with our service, carers and ‘service users’ decide upon aspects of our community that they feel are important (e.g. health and wellbeing; exercise; research; special interests; keeping safe etc.) and how best to promote these to those who attend the regular events. Moreover, to ensure the project remains ‘cutting edge’ and provides exactly what those with AS and their supporters want and need (as opposed to what services think ‘they’ need), ‘Asperger Collective’ regularly meet to review each Drop-In event and to plan for the next in a true example of co-production.

I believe that ‘Asperger Collective’ and our Drop-In Project is a superb example of how a service, its service users and carers within the Autism community can effect change by working together.  I believe that it was essential with the Drop-In project that members of Asperience and the Carer’s Group were able to advocate and organise for themselves, without feeling that we needed to do this on their behalf.  Both the carers and service users knew exactly what they wanted and needed from such a service, and their passion, spirit and determination to develop the Drop-In has resulted in what I believe people within the Liverpool ASC/Asperger syndrome community and their networks of support truly want. This is a meaningful service that all in Liverpool can be proud of, and I feel that this it is an amazing example of what people with Asperger syndrome and their networks of support can do in collaboration with a statutory service to affect change in their community during this time of austerity (and hopefully beyond).  Often services provide for people with Asperger syndrome and their carers and advocate on their behalves; whilst I do not feel that this inappropriate, I feel that the ‘Asperger Collective’ and the Drop-In project both emphasise and illustrate how we can work together to create our own unique services, by employing our own energy, vision and direction.

 

How do you ensure an effective, safe, compassionate and sustainable workforce?

All of our workforce are offered regular training opportunities through the Trust and at events regionally and nationally. Members of the service have been trained in NICE recommended assessment methods, and the service regularly attends conferences such as the National Autistic Society’s annual national and international Professionals Conferences. Our workforce has recently been able to increase to train a Support Worker to qualify and now practice as Occupational Therapist, and recently we have also recruited a service Manager (a post previously undertaken by one of our Clinical Psychologists) and a Health Practitioner (Community Nurse) and a Health Practitioner (Social Worker). We have also trained one of our team up to become a fully qualified Family therapist who can then offer systemic interventions to those we serve and their networks of support. All of our workforce receive regular clinical and management supervision, and the service also meet collectively on a monthly basis for reflective practice. The service has also recently entered into the Aston team building project in order to further improve our practices and responses to the ever changing and expanding clinical population who we serve. Our service has many of the staff who joined us when we first launched in 2003, so our workforce retention rate is excellent. Many of our Carers group and Aspirience members have been through the Trust’s People’s Participation Team and contribute to team provisions such as providing input to our clinical group programme and other training we provide both within and without the Trust; we provide supervision for our Carers group members and Aspirience members with regards to this.  Finally, our service recently were awarded the ‘Respect’ Award in our Trust’s Positive Achievement Awards 2019 as the service who were considered a great example of a team who ‘valued individuality and difference, who show care, empathy and respect for colleagues, service users, and carers’. We feel such recognition as a service recognizes our high levels of passion and motivation for the work we do and the population we serve, and we hope to also be recognized at a national level in the National Positive Practice in Mental Health Awards.

 

Who is in your team? 

Band/gradeNumberWhole-time equivalent
Assistant Practitioner411
Clinical Specialist in Asperger Syndrome611
Service Administrators321
Service Manager / Community Nurse711
Clinical Lead / Clinical Psychologist8b11
Health Practitioner / Social Worker611
Health Practitioner / Community Nurse511
Community  Nurse611

 

 

 

 

 

 

 

2 Trainee Clinical Psychologists (continuous 6 month placements on a cyclical basis from North West Clinical Psychology Doctoral courses)

 

62Both 0.6
1 Clinical Psychologist711
1 Occupational Therapist611

 

How do you work with the wider system?

The Mersey Care (Non-LD) ASD Service operates as a ‘Managed Care Networkwhereby the takes on a co-ordinating role ensuring communication and continuity between services, allowing individuals to be referred into services within the Managed Care Network that most suits their needs. Beyond provision of a screening, assessment, diagnosis, intervention and follow up service, we offer direct support through our managed care pathway approach, and we make referrals on to other services as required. We work closely with local services, including schools and colleges, housing associations, primary healthcare services and other specialist mental health services such as those for people involved in the criminal justice system, and those receiving support from mental health and alcohol and substance misuse services. We also have close links with third sector organisations across Merseyside and with primary care services such as GPs and within local hospitals (such as with our links with primary care liaison staff teams). We provide training and consultation around Asperger syndrome to all who request this input, at no cost where required, in collaboration with our Carer representatives and Aspirience. We feel therefore that our approach promotes access to integrated health, social care and community services. Our ‘Managed Care Network Pathway’, is the network of services that work together to help people with Asperger syndrome to live valued lives in their communities; our service takes a co-ordinating role for this vision to be realised.

 

Do you use co-production approaches? 

Co production is at the heart of our service philosophy and both our carers group and Aspirience are consulted on all aspects of our service, including sitting on interview panels for new staff members; commenting on existing resources and creating new resources (see ‘Our Journeys with Aspergers’, below); co authoring reports, publications and commissioning reports and funding bids; co producing services such as the Drop In project; and contributing to our training programmes and clinical group interventions.

Examples of co produced services such as the Drop In are I believe superb examples of how services, service users and carers within the Autism community can effect change by working together. This is a meaningful service that all in Liverpool can be proud of.

Those with and without diagnoses are able to access the service; those without a diagnosis who have heard of the service are able to access information around Asperger Syndrome, and those who have a diagnosis are able to meet with parents, carers and others in an environment where all are encouraged to be enabled and to have a valued presence within their communities. Specialist speakers are sourced (e.g. Citizens Advice Bureau, Police, Fire Service etc.), but also other specialists in subjects such as mindfulness, chi gong etc. are invited so as to offer a truly wide raging and varied experience for all users of the resource. People with Asperger syndrome are also encouraged to run workshops on their own areas of expertise so they can both network and share their experiences with others. I would argue that in the current time of austerity within the UK, a service such as this has been able to offer an essential and highly valuable opportunity for social networking, and for people to support each other and learn from each other. The project has also been even more positively impacting on both supporters and those with Asperger syndrome because it has not been reliant on statutory services to organise / provide, but has raised many people’s levels of confidence and pride to recognise what can be done in collaboration to provide such a fantastic resource which is owned by the community.

Alongside the Drop In we have also worked in collaboration with Aspirience to support them to produce resources which are now routinely given to all newcomers to our service. For example, Aspirience have produced their ‘Our Journeys with Aspergers’ book which is a collection of Aspirience members’ stories, advice and artwork, which has been developed in order to tell their stories in the hope that others entering the service can relate to them; know that there are others who have travelled along a similar path, and that their stories will help to reduce some of the isolation and loneliness that many people with Asperger syndrome have felt at some point in their lives. The book emphasizes how despite the numerous challenges many of our service users have faced, it is possible to live a fulfilling and meaningful life. Aspirience acknowledge that Asperger Syndrome affects people regardless of cultures, religions and races, and they feel in union with fellow individuals who are entering our service.

The Mersey Care Asperger Service have also worked in collaboration with the Carers group to support them to produce resources which are now routinely given to all newcomers to our service. For example, the carers group and the service have co produced an ‘Asperger Passport’ which was developed as a communication tool for individuals with a diagnosis of Asperger syndrome. The Carers group felt passionate about improving the lives of those they care for, which included finding ways that service users could improve their day to day interactions. The passport size tool enables individual’s to communicate with medical staff, police officers and other key professionals, while out and about in the community. This tool aims to spread awareness about Asperger syndrome as a condition, as well as affording individual’s the opportunity to express their needs to others, without feeling pressured to use spoken language

 

Do you share your work with others? If so, please tell us how.

We disseminate our work in peer reviewed journals, online professional networks (such as Network Autism), at regional, national and international conferences, and through the local media such as local radio, newspapers and other media outlets where appropriate. We are also a part of the national University of York SHAPE project which is tasked with researching differing models of Asperger service UK-wide, in order to establish areas of excellent practice and to further inform our service models. We have also recently published a version of the Coventry Grid for adults in a peer reviewed journal which we hope will help clinicians when differentiating complex trauma from ASD when diagnosing individuals with (non-LD) ASD; this has been developed alongside colleagues from Universities in Liverpool and Sydney, Australia. We have also had our paper around ‘The human rights of people with autistic spectrum conditions in health and social care’ recently accepted for dissemination at the 12th Autism Europe Congress to be held in Nice France in September 2019.

 

What outcome measures are collected, how do you use them and how do they demonstrate improvement?

Our service employs amongst other outcome measures a bespoke team-designed outcome scale (the Maslow Assessment of Needs Scale; MANS-AS). This was developed in an attempt to capture aspects of our service users’ needs at the point of entry into the service, and at point of exit in terms of whether service users felt that the contact and interventions delivered by the service had impacted on areas of their life in a meaningful way (or otherwise).

The MANS-AS measure captures the following:

  • Service users’ self-reported assessments of their levels of ‘safety’ (e.g. risk to self and others);
  • Sense of belonging (e.g. being part of a social group;

§  Social presence and participation);

§  Service users’ self-esteem (and esteem derived from others);

§  Their perceived individual potential (e.g. achieving personal goals).

Along with individual outcome scales employed by the differing disciplines within the service (for instance outcome scales employed by Clinical Psychologists such as the BDI; SCORE etc.), the MANS-AS scale has identified a number of significant positive changes in our service users’ lives.

A recent evaluation of scores collected since 2009 indicated the following outcomes following interventions by the service:

  • Service users’ perceived ‘Risk of Being Harmed by Others’ had been significantly reduced in 67%of respondents.
  • Service users’ perceived likelihood to engage in self-harming behaviours (including their perceived likelihood to engage in suicide behaviour or attempts) had reduced by 76% of respondents following team input.
  • 85% of service users reported that their self-esteem had significantly improved following on going contact with the team.
  • 71% of respondents reporting improvements on the ‘Achieving My Goals’ scale.
  • 66% reporting improvements in their self-confidence levels.
  • 71% reported having a significantly ‘Improved Purpose to My Life’.
  • 85% reporting improvements on the ‘Accepting Who I Am’ scale.
  • 72% reporting improvements regarding ‘Fulfilling My Potential’ following team input.
  • 58% of respondents reporting ‘significantly improved interactions with [their] family’ following team input;
  • 66% reporting improvements regarding ‘Feeling Respected by Other People’;
  • 72% reporting improvements in ‘Making Friends and Keeping Friends’ following their diagnosis and on going support and interventions delivered by the team.

In addition to the MANS-AS the service also produces regular reports on activity and outcome completed by Doctoral trainee Clinical Psychologists (e.g. evaluation of Drop In and other projects), the delivery of regular commissioner reports, the completion of our Trust’s ‘Customer Satisfaction Surveys’, collection of service demographics and referral trends, and other service developed measures such as the Perception of Difficulties Questionnaire-Asperger Version and the Perception of Difficulties Questionnaire-Relatives Version (PDQ-AS and PDQ-R).

 

Has your service been evaluated (by peer or academic review)?

 

 

 

 

How will you ensure that your service continues to deliver good mental health care?

The Mersey Care (Non-LD) ASD Service meet regularly with our local commissioners and have excellent relationships with them. The commissioners we believe both understand the significant challenges of delivering a gold standard service for our clinical population and their networks of support, but that they appreciate our commitment to doing so and to innovative collaborative working practices which continue to allow us to affect this so successfully. We regularly bid for available monies with the hope of expanding our service further, and support our service user groups and Carers to develop business cases for investment wherever these are available.

In terms of the sustainability of projects such as the Drop In, we currently host 70+ visitors at each event and these numbers continue to increase, so in terms of those accessing the Drop-In there is a sustainable demand. Additionally, the project receives a very small amount of funding for the venue which will be on going from the Local Authority but could also be met by Asperger Collective’s charitable arm should this ever be required. The staffing from the Mersey Care Asperger Service is guaranteed given the worth of the project, but beyond this the ‘Asperger Collective’ charity has and will continue to hold fundraising activities in order to increase further its income in order to open more frequently as time goes on (currently the service runs once monthly but demand is there to run this more frequently). All of our activities and specialist speakers are delivered either by volunteers from the local community or 3rdSector / statutory organisations, or by fundraising generated by the ‘Aspirience’ service user group; the Asperger Carers’ Group; and the newly developed ‘Asperger Collective’ charity arm. At the ‘Drop In’ we utilise rooms for housing and NHS advice clinics; we have carers who are CAB employees who run PIP advice clinics; we use our friends from the Tate to coordinate artistic endeavours; and our Volunteers work alongside us to staff the events together. To raise the service’s profile further for 2020 a number of events have been planned including a sponsored tandem ride from Lisbon to Santiago de Compostela; two Equinox music and arts events; mid-summer Jamboree; and  we are gearing up for our first Christmas Panto!  We are currently engaged with colleagues from local Universities developing funding bids with differing organisations so we are able to develop a film project around our work.

 

What aspects of your service would you share with people who want to learn from you?
We frequently meet with other services both locally and nationally in order to share good practice. We have frequently hosted other services / commissioners hoping to develop their services for people with Asperger syndrome diagnoses in order to help them develop their models of care appropriately. We have developed our services over 15 years and the ‘landscape’ for Asperger syndrome services is very different now from when we first developed our service in 2003. We have had to be adaptable and flexible and innovative in order to react to the changing NHS and the changing communities in which we live and work. Challenges include how we have been able to adapt to the implementation of the Autism Act (2009) and the subsequent ‘Think Autism!’ strategy which has required us to be able to react to increasing demands for diagnostic assessments, coupled with providing excellent post diagnostic services. Such challenges have required us to develop new models of working (more group based interventions where appropriate), whilst also learning to work side by side with our Carers group and Aspirience in order to facilitate the development of new and exciting (and most important of all sustainable) projects which give the ‘Asperger community’ ownership in the services which are provided by and for them. Challenges and learning points have also included helping our Carers and Aspirience to also develop and learn ways to work collaboratively together (such as by employing an Appreciative Inquiry project on ‘collaborative working’) in order together to learn what is valued by all stakeholders in our service (service users; carers; professionals) and how we can work more effectively now and into the future. We believe our service and how we have worked alongside carers and Aspirience to form the ‘Asperger Collective’ is a genuine example of how we, along with a similarly passionate group of carers and service users, can work in collaboration in these challenging economic times to effect lasting change and improve services.  We listen to those who have first hand experience of exactly what they want from services and the passion and spirit of our partners has ensured that the ‘Collective’ and its various projects and groups has resulted in giving our service users and their carers within the Liverpool (non-LD) ASD community what they tell us they truly want. Our ‘stakeholders’ decide upon aspects of our community that they feel are important (e.g. health and wellbeing; exercise; research; special interests; keeping safe etc.) and how best to promote these to those who attend our regular events. We have all created safe and welcoming spaces for our (non-LD) ASD community; developed lasting and meaningful relationships together; publicised (non_LD) ASD issues throughout Liverpool; created resources that are used by services and local businesses to increase our profile; and continued to develop multi media projects that support our service users and carers to tell their stories. Within the ‘Collective’ our service users now self-advocate, and I believe our service has enabled our service users to develop themselves and their collective sense of agency without having to be fully reliant on ‘traditional’ service funding streams. This has raised our service users’ and carers’ levels of confidence and pride.

 

How many people do you see?

The Liverpool based team received approximately 420 referrals in the year 2017-2018. The Sefton based team approximately 200.

The 12 week clinical group programme is run for 3 separate groups per week across the 12 weeks. Approximately 15-20 people attend each group. The Social Inclusion Hub has from 30-50 attendees per week. The Drop in project has approximately 70-90 attendees per month. The service have approximately 400 people ‘open’ and in receipt of services at any one time.

How do people access the service?

We have an open referral policy. Individuals may refer themselves, or be referred by a family member, health or social services professional. The team has a referral form, which can be posted, faxed or e-mailed. The form may be completed over the telephone, with a team member. All new referrals are acknowledged within 48 hours upon receipt and are allocated an appointment with an assessor accordingly (either by phone or in person dependent on circumstances). All referrals are discussed in the weekly team meetings ensuring that initial appointments following referral are offered within 4 weeks from initial appointment where possible. For those accessing the service with a pre-existing diagnosis of Asperger syndrome these clients are offered a ‘care planning’ appointment. For those who do not yet have a diagnosis, an appointment is offered to discuss the suitability of the referral and if appropriate they are placed on our waiting list for diagnostic assessment. Following receipt of a diagnosis (or otherwise) the client is then triaged to other services provided by the service, within the Managed care Network, or to other appropriate services as required.

How long do people wait to start receiving care?

We have contact with all referred to the service within 6 weeks off referral to us. Current waiting list for diagnostic assessments is unfortunately approximately 16 months which is easily within local and national waiting time standards due to the high and increasing demand for such services across the country. That said, in line with NICE Quality Standards we are currently working to reduce our waiting list for diagnostic assessments timescale down to within 3 months; we have also applied for additional TCP grants in order to specifically target the diagnostic assessment waiting list. Fast tracking of more ‘urgent’ diagnostic assessments (e.g. where there is a risk for the client of loss of housing; hospitalization; declining mental health or to assist our colleagues in the mental health or criminal justice system etc.) is always available. Here assessments can be fast tracked to begin within a month. In terms of post diagnostic interventions the average time to receive input such as 1:1 or group interventions is approximately 4 months but this can be fast tracked for those considered in crisis.

How do you ensure you provide timely access?

See above re prioritization. We are keen to provide a service which meets NICE Quality Standards for services for people with autism (2014) and meets the NICE guideline recommendations for adults with autism (2012). We are able due to our Trust’s support to backfill posts for e.g. maternity leave to enable us to retain our staffing levels and meet the continuing demands placed on the service.

 

What is your service doing to identify mental health inequalities that exist in your local area?
We regularly audit referral sources, referral numbers, outgoing referral sources to observe trends in our populations that we serve. For example we have recently observed a number of young people aged between 16 and 17 who are referred for assessment to our service. Whilst we are not commissioned currently to provide a service to this population we have been able to highlight this area of potential unmet need to commissioners and are in the process of completing a business case for a potential expandsion of the service to provide this population with the support they potentially require. We have also worked hard to engage minority communities (e.g. Chinese community; Jewish community; other minority communities) within the Merseyside region who do not access our services to the same degree that other community groups do.

What inequalities have you identified regarding access to, and receipt and experience of, mental health care?

Lower rates of referral for people from black, Asian and minority ethnic groups; we continue to work hard to try to promote our services in these communities given the prevalence of Asperger syndrome is known to be no different in these communities than in other communities who access our services more frequently.

What is your service doing to address and advance equality?

We work to address and advance inequalities by adhering to the Autism Act (2009) and the ‘Think Autism!’ national strategy guidelines, alongside the NICE Quality Standards for services for adults with autism (2014) which members of our service contributed to in terms of authorship, and the NICE guidelines for adults with autism (2012).

The Autism Act (2009) attempted to address gaps in service provision by compelling Local Authorities in England to commission appropriate services for all people on the autism spectrum.  The Act directed that Local Authorities and NHS Trusts must, amongst other things, provide autism awareness training for all staff and develop a clear pathway for the diagnostic process. The Autism Act (2009),NICE guidelines and NICE Quality Standards for Adults with Autism (NICE Guideline 142; 2012; NICE, 2014) set out the standards of care that should be delivered for people with autism. The Autism Act makes specific reference to services meeting the needs of adults with autistic spectrum conditions and referred to:

q  The provision of relevant services for the purpose of diagnosing autistic spectrum conditions in adults;

q  The identification of adults with such conditions;

q  The assessment of the needs of adults with such conditions for relevant services;

q  Planning in relation to the provision of relevant services to persons with autistic spectrum conditions as they move from being children to adults;

q  Other planning in relation to the provision of relevant services to adults with autistic spectrum conditions

q  The training of staff who provide relevant services to adults with such conditions;

q  Local arrangements for leadership in relation to the provision of relevant services to adults with such conditions.

The sections above illustrate I believe how the Mersey Care Asperger Service meets all of the above requirements of the Autism Act placed upon us.

We are also extremely keen to promote any other legislation which might enable a better service for our clinical population and those who support them. For example our paper ‘The human rights of people with autistic spectrum conditions in health and social care’ has been developed and presented at various national and international conferences (recently due to be presented at the 12th Autism Europe Congress in September 2019) and we feel highlighting such issues enables us to continue to support our ‘stakeholders’ to advocate their human rights for themselves.

 

How do you identify the needs of a person using the service (such as their physical, psychological and social needs)?

We use DISCO and ADOS NICE recommended gold standard tools to assess for Asperger syndrome.

We employ the Spectrum Star and other specific assessment tools (such as psychology screening tools; sensory assessment tools) to identify specific needs for our service users so as to inform care planning and interventions.

We use our own self developed MANS-AS (see above) and PDQ-AS and PDQ-R (see above).

How do you meet the needs of people using the service and how could you improve on this?

Our service is commissioned to provide:

  • Awareness/acceptance for people with Asperger Syndrome and their families form both professionals and the wider community.
  • Assessment and diagnosis.
  • Advocacy.
  • Crisis intervention.
  • Access to specialist services.
  • Access to supported/social groups.
  • Support into mainstream/established services.
  • Support with transition.

Recently reviewed service satisfaction evaluation tools (including the MANS-AS) have identified the following:

  • Service users’ perceived ‘Risk of Being Harmed by Others’ had been significantly reduced in 67%of respondents.
  • Service users’ perceived likelihood to engage in self-harming behaviours (including their perceived likelihood to engage in suicide behaviour or attempts) had reduced by 76% of respondents following team input.
  • 85% of service users reported that their self-esteem had significantly improved following on going contact with the team.
  • 71% of respondents reporting improvements on the ‘Achieving My Goals’ scale.
  • 66% reporting improvements in their self-confidence levels.
  • 71% reported having a significantly ‘Improved Purpose to My Life’.
  • 85% reporting improvements on the ‘Accepting Who I Am’ scale.
  • 72% reporting improvements regarding ‘Fulfilling My Potential’ following team input.
  • 58% of respondents reporting ‘significantly improved interactions with [their] family’ following team input;
  • 66% reporting improvements regarding ‘Feeling Respected by Other People’;
  • 72% reporting improvements in ‘Making Friends and Keeping Friends’ following their diagnosis and on going support and interventions delivered by the team.

In terms of other aspects of the measure, overall 83% of respondents reported feeling that working with the Mersey Care Asperger Service  had ‘helped [them] to make more choices about how [we] live our lives’. 67% reporting that working with the team had ‘helped [them] feel more independent’, and 80%reported that since working with the service they were now significantly more satisfied and ‘Happy with the way [we] spend our time’.

Our service also benchmarks itself on NICE Quality Standards and our practices and allocation of resources (and bids where available for additional resources) takes these into account. For example, we are aware that our diagnostic assessment waiting list exceeds the recommended 3 month waiting list as recommended by NICE. We are currently addressing this within our service to reduce this waiting time for incoming clients, but this is of course also offset by the need for quality post-diagnostic interventions, and our passion to not become a ‘diagnostic only’ service. I feel this is a challenge faced by many of our colleagues across the nation who serve this clinical population, which is made additionally more challenging by the increase in awareness of (non-LD) ASD conditions, and therefore the increase in demands on our services, particularly in the current climate of economic challenges. That said, benchmarking ourselves against NICE guidelines and providing many of our interventions in line with their recommendations gives us a great deal of pride.

 

What support do you offer families and carers? (where family/carers are not the service users)

Carer Workshops

Family Therapy (provided by a member of the team who has trained to become a Family Therapist)

Close links with the Carers group

Carers invited to the 12 week clinical group programme

See above information on Carer group support

Carers contribute to the quarterly Triangle of Care self assessment of our service

 

Is there anything else you want to share about what makes you an example of positive practice?

We believe in addition to the NICE recommended diagnostic assessments and post-diagnostic interventions we offer, our service also demonstrates how we, along with a similarly passionate group of carers and service users, can work in collaboration to effect lasting change and improve services.  by working collaboratively with our ‘stakeholders’ we feel we have helped provide services that the (non-LD) ASD community truly want. The service users and carers inform us of the aspects of our community that they feel are important (e.g. health and wellbeing; exercise; research; special interests; keeping safe etc.) and how best to promote these to those who attend our regular events. We have: created safe and welcoming spaces for our ASC community; developed lasting and meaningful relationships together; publicised (non-LD) ASD throughout the Merseyside region; created resources that are used by services and local businesses to increase our profile; and continued to develop multi media projects that tell our service users’ and carers’ stories. We believe we are a superb example of how we can effect change by working together.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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