How this PCN changed the autism pathway

Stort Valley and Villages PCN was concerned about the long waiting time for autism assessment, so it created a pathway to help. The service won in the Clinical Improvement: Mental Health category in the General Practice Awards in December. Here’s how it went about setting up the service – and how it has impacted the lives of vulnerable patients.  

The pandemic has resulted in longer outpatient appointment waiting times, which is particularly challenging for children presenting with autistic traits. This created an unmet need for the children and their families that could last years. Furthermore, if the young person did not meet the diagnostic threshold for assessment of autistic spectrum disorder (ASD), there was no support offered despite the individual experiencing considerable distress.

So, to address this need, we created a pathway – waiting well with suspected autism.

This innovative service intervenes much earlier in the assessment process than usual and supports young people and their carers as they wait for a formal diagnosis.

In one year, 175 people attended the service, with a vastly improved success rate in onward referrals being accepted – see box. However, in this model, the focus is not diagnosis. Instead, the main aim is the promotion of wellbeing and understanding.

The service is run by Stort Valley and Villages PCN children and young people social prescribing (CYPSP) and occupational therapy team. The team comprises a health coach, social prescriber, and care coordinator and is led by an occupational therapist (OT) with a specialist mental health background. It is funded via the Additional Roles Reimbursement Scheme (ARRS).  

The service has received several awards for being patient-centric and making an impact on individuals’ lives – an HSJ award for primary and community innovation, mental health innovation of the year award and the GP award.

Aims

The aim was to create a person-centred, primary care approach to support any child or adult who perceived – or their parent/carer perceived – that they had autistic traits. We wanted to reduce the burden of waiting for a formal ASD assessment and offer earlier support and interventions to enhance the quality of their life. 

We also wanted to reduce health inequalities for a vulnerable group of people with ‘hidden’ disabilities and bring some new understanding to this area because there is a paucity of research on autistic children and the barriers of access to healthcare. We were also keen to encourage integrated working in the care of people with autistic traits, reduce the bureaucratic burden on the practice teams and ensure smooth referral into specialist services when needed.

The objectives were:

• To create a PCN hub service with appointments across the week and seeing patients within a month.
• To improve the quality and speed of onward referrals.
• To offer targeted support and early intervention utilising the specialist training of a mental health OT.
• To link with the PCN social prescribing service and provide continuity of care over a period of time.
• To improve the experience of patients and carers with ASD traits
• To educate the clinical teams on what support is available and improve local knowledge on ASD.

Initial steps

We reviewed the evidence for early intervention in ASD and noted that the Social Care Institute for Excellence said: developing capacity for low-level early intervention services could lessen the lengthy battles for support that many people with autism and their families have had to wage.

We recruited an OT through ARRS funding who joined the existing CYPSP team. As there is some evidence that Dialectical Behavioural Therapy (DBT) training can help with ASD, DBT training was arranged to increase understanding of helping people with emotional dysregulation.

The service started gradually, accepting referrals from the CYPSP team in the first instance. After a few months, the team presented to the PCN team, including board members. The service was enthusiastically received and GPs across the different practices were impressed. Following a protected learning event for all staff in PCN practices, the service was opened out to clinicians.

As the number of referrals increased, the PCN clinical director, Dr Sian Stanley, regularly monitored waiting times and access. If needed, additional time or resources to support the service could be increased or reduced because a key priority was to avoid creating another backlog. This resulted in recruiting a care coordinator to manage the appointments and paperwork, and the volume of referrals grew.

How it works for healthcare professionals

When concerns are presented to a GP or clinician about a person’s sensory processing and emotional or social interaction challenges, they can refer to the local service. This frees up GP time, who no longer needs to gather information from school and home to complete a complex referral form. The forms required for referral were onerous as they required statements from parents, schools and clinicians. If the paperwork was incorrect, the referral would bounce back, and the GP would need to complete the same form again.  

A survey of 22 GPs who used the service revealed that 91% said it was useful in completing referrals and 81% found it helpful in supporting patients. It also found that 67% felt it had helped with workload and 86% would recommend it to colleagues.

The PCN practices have enabled full access to clinical records, which means information could be shared to reduce children/carers having to repeat information already shared.

Dr Stanley provides the leadership and overall responsibility for the service, with the lead OT managing their own caseload with the care coordinator.

Every week, the CYPSP team, mental health coach, OT and Dr Stanley, as the supervising GP, meet for an hour to discuss all new cases or cases of concern. Dr Stanley will assess and discuss cases in this supervision. If there are any concerns about the wider family or adults in the family, she has access to the mental health multidisciplinary team (MDT) where, with the patient’s permission, we can discuss complex cases with colleagues from psychiatry, social care, and drug and alcohol services.

In addition, there is monthly supervision with a child and adolescent psychotherapist on a one-to-one basis for each team member, aside from the care coordinator and GP. This costs £150 per month and the PCN funds it via the investment and impact fund (IIF). It has been important in creating a safe space for reflection and self-awareness.

Quarterly, the PCN clinical director conducts a review. She looks at the number of patients who have been seen and identifies who has had onward referral to a specialist, who has been signposted to other services and the number of appointments needed per individual.  The review also looks at waiting times, patient feedback, and team wellbeing with regards to whether they feel supported.

How it works for patients and carers

Through adopting a ‘what matters to me’ approach, the team focus on young people and their carers, providing the support that they need.  

Each appointment is one hour and face-to-face. The initial assessment with a young person includes rapport building and jointly completing the referral questionnaires provided by the specialist unit with the child and carer/parent.

Using the Thrive Model, which asks ‘what matters to me?’, there are discussions to identify local resources that could offer support and there is signposting to wider services offered by the PCN team. The approach is informed by an OT model of practice called Kawa – which uses the metaphor of a river to support the exploration of self, life events and environment – as well as knowledge of sensory integration and DBT-informed practice to help with some of the emotional aspects of neurodiversity that can arise.  Children and parents/carers are taught how to employ strategies that could help, which may include some recommended equipment. If families struggle to pay for this, the PCN also has access to a bursary.

The service has helped young people achieve their desired outcomes, such as returning to school and joining youth groups (see case study box). It has also supported them to attend psychological therapies, such as CBT for anxiety.  And the clinic has helped parents who were struggling to meet the needs of their children by equipping them with strategies and techniques to support and improve their family life.

Feedback

Many people need only one appointment to offer advice and guidance on how to manage some of the presenting symptoms and, if deemed appropriate, onward referral to the correct service.  

Where referrals for ASD assessment are made, they are of the highest quality with greatly reduced rejection levels by the receiving service, meaning that the process runs smoothly and reduces some of the associated stress of the referral process for children, their families and the primary care team.

By providing a form of early triage, the service has also reduced the number of families waiting unnecessarily where a referral was not appropriate. There has been a 10% reduction in referrals as a result of this service. 

The feedback from patients and their carers has been overwhelmingly positive. The young people who have been through the service have found it very supportive and, in some cases, life-changing.

It has also promoted understanding of autism and enabled at least two young people to attend school again.

Next steps

We now run a group for people with social anxiety at the local pub twice a month, which has grown in popularity.  For the younger patients, we run a drumming group at the local youth café with our care coordinator, who creates a safe space for those with possible neurodiversity.

This autism service could easily be replicated in other areas as it is simple, using brief intervention and signposting to other services dependent on need/want. If the same level of reduction in referrals occurred elsewhere as in our PCN (10%) then it could have significant impact on national waiting times for ASD assessment. Through the ARRS scheme, it is cost-neutral to practices.

We have had preliminary discussions with the autism team at NHSE, who were impressed with the concept and are looking to see if this model could be replicated elsewhere.  Herts County Council are promoting the model to other PCNs in an effort to improve care for people with possible autism. And we are in discussion with the University of Hertfordshire to train student OTs.  This will, in turn, hopefully lead to the development of a larger workforce of mental health OTs in primary care.