Improving mental health support for autistic people

Dr Conor Davidson is Consultant Psychiatrist and Autism Clinical Lead at Tees Esk and Wear Valley Foundation Trust. Conor and his colleagues discuss how they set out to improve mental health support to autistic people by training staff, launching an autism clinical pathway and improving diagnostic services.

Below is an abridged version of the full article.

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Authors: Dr Conor Davidson, Dr Elspeth Webb, Anne Cahill, Jacqui Dyson, Hazel Griffiths, David McAsey

Improving mental health support for autistic people

The UK Government published the Adult Autism Strategy: statutory guidance in March 2015.  The guidance sets out various obligations for health and social care providers, including staff training in autism awareness and making reasonable adjustments for autistic service users.  In this article we present the experience of Tees, Esk and Wear Valleys (TEWV) NHS Foundation Trust in implementing these recommendations, and hope that other professionals find it helpful for application in their own organisations.

TEWV is one of the largest mental health trusts in the country, covering a large geographic area of some 2 million people. In early 2017, TEWV launched a trust–wide autism project to improve its offer to autistic patients accessing mental health services. The spark for the project came from the statutory guidance, but the real impetus came from the recognition within the trust that it was the right thing to do for patients and their families.

Note – the term ‘expert by experience’ in this article refers to either an autistic person or their family member/carer.

Assemble the team

Crucial to the success of the project was strong support from the Trust’s senior leadership:

  • The Chief Operating Officer was Project Sponsor
  • The executive team released a sum of money (roughly £400,000 over two years)
  • An autism strategy manager and trust-wide autism clinical lead were appointed
  • An expert by experience, autism nurse consultant and an administrator were recruited.  

In the first half of 2017 we held a series of consultation events with staff, service users and carers.  At this point, the focus was on adult mental health services, as we perceived this to be the area of greatest need.  

Some clear themes emerged from the consultation:  

  • The high rates of mental distress and mental illness experienced by autistic people
  • The difficulty accessing mainstream mental health services 
  • The lack of staff training and understanding of autism
  • The long waiting times for assessment
  • The lack of post-diagnostic support.

Another key theme was the importance of involving autistic people and families in a meaningful way. This became one of our guiding principles: we are proud that every element of the project has had input from experts by experience, up to and including this article.

The TEWV autism framework

Next, we wrote the TEWV autism framework, setting out our aims and objectives and the means by which we will achieve it.

Our overall ambition is: 

Autistic people should have equal access to mental health and learning disability services, and be treated by autism-aware staff who are able to make reasonable adjustments when required. Our ambition is to be the most autism-friendly NHS organisation in the North of England.

The key strands of work outlined in the framework are:

  • Ensure autism assessment is of high quality and waiting times are reduced as much as possible 
  • Provide staff training in autism awareness
  • Ensure that reasonable adjustments for autistic patients are identified and implemented
  • Provide consistent, high quality transitions from children and young people services to adult services.

As well as these specific aims, we also have a more overarching goal - to win hearts and minds. For too long, general mental health services have regarded autism as ‘not our business’. We have even heard anecdotal reports of autistic people having trouble accessing mental health treatment because clinicians tell them ‘we don’t deal with autism’. By the end of the project, we hope that all TEWV staff appreciate that autism is their business.

Staff training

At our consultation events there was a strong desire from staff and service users to have a high level of training. Ultimately though we had to strike a balance between desirability and feasibility, given the resources available and the large amount of statutory and mandatory training professionals already have to complete.

Finally we settled on:

  • Level 1 ‘autism awareness’ training for all staff, comprising of a 10 minute video, embedded in the mandatory Equality and Diversity elearning package.  The video can be watched here.
  • Level 2 ‘understanding autism’ face to face 3 hour training package for clinical staff.

Both level 1 and level 2 training materials were co-produced with service users. All of the face-to-face training is co-delivered with experts by experience. 

Although the level 2 training is not mandatory, we have been heartened by staff response. Nearly all of the sessions have been oversubscribed and feedback has been highly positive - 90 % rate the training as relevant to their role. In particular the contributions from experts by experience have been highly praised.

As of October 2018, 635 staff have received Level 1 training and 700 staff have received Level 2 training. The aim is to train 80% of clinical staff by March 2020.

Reasonable adjustments

The challenge here was to establish a mechanism to prompt clinicians to consider and implement reasonable adjustments as a routine part of their practice. A select group of staff, service users and carers were invited to produce a ‘Clinical Link Pathway’ (CLiP). A CLiP is a series of resources that are complementary to the existing TEWV standardised care pathways.

The aim of the autism CLiP is to support clinicians in collaboratively discussing, identifying, implementing and reviewing reasonable adjustments. The CLiP resources developed so far include: 

  • New questionnaire for patients and carers regarding needs specific to autism
  • Guidance on considering the sensory environment
  • General hints and tips about communication
  • Advice on healthcare/hospital passports 
  • Guidance around the clinical considerations for assessing and treating mental illness in autistic people.

The CLiP is currently in pilot form with a plan to roll it out across all Trust localities throughout 2019. At present the CLiP only applies to adult patients, but we are planning to adapt it for children’s services in due course.

Children and young peoples’ services

The initial focus of the project was on general adult services but similar issues existed in children and young people’s services (CYPS). In May 2018, additional funding was secured to expand the scope of the project, and a CYPS trust-wide professional lead and assistant were appointed.   

Currently we are mapping autism assessment processes across the Trust in order to produce a gap analysis. The aim is to streamline the assessment pathway for children, including greater consistency in processes such as use of clinical tools and paperwork.

Another priority is transitions for young autistic people (from 17.3 years) from CYPS to adult mental health/LD services, ensuring the transition protocols and procedures explicitly consider autism. 
We will also establish a baseline of autism training in CYPS across the Trust with the aim of developing a comprehensive training plan. CYPS staff are being encouraged to attend the Level 2 training that is already well established in adult services.

The future

It is important that we evidence that the project has resulted in clinically meaningful improvements.  We are collecting a variety of outcome measures, including:

  • Training analysis of numbers trained, in which teams
  • Staff surveys of autism knowledge and confidence in applying reasonable adjustments
  • Case note audit of reasonable adjustments for autistic patients
  • Qualitative feedback from staff on their experiences of using the autism CLiP 
  • Patient feedback including complaints and serious incidents.

In September 2018 we consulted on the Trust’s autism strategy beyond the lifespan of the project. It was acknowledged that there is a need for ongoing staff training. Given the new national 12 week target for autism assessment waiting times, the Trust also needs to ensure our specialist autism teams are adequately resourced. There is also a need for specialist autism consultancy to work into general mental health teams for complex and high risk cases.

All of this will require consistent levels of additional funding, but we are hopeful that the prioritisation of autism in the NHS ten year plan will allow mental health trusts like ours to invest more into autism services. Autistic people and their families deserve no less.

Further information

Views of experts by experience who were involved in the project.

Date added: 22 November 2018