Lucy Skye, Local and Health Authority Consultancy Specialist at the National Autistic Society (NAS), discusses a recent review they did of Islington’s autism diagnostic pathways for children aged 0 to 18 years.
Lucy highlights some of the good practice that was already taking place and sets out some recommendations that the NAS made to further develop the service.
Author: Lucy Skye
Reviewing Islington’s autism diagnostic provision for children
In July 2016 Islington Clinical Commissioning Group sought a review of local autism diagnostic pathways for children 0-18 years. There are currently two pathways according on age:
- 0-5 years via the Social Communication Team
- 5-18 years via the CAMHS Neurodevelopmental Team.
This short-term review was to explore current services and support, identify areas for potential development and provide recommendations based on national good practice and guidelines, for example:
- offering a variety of post-diagnostic support
- ensuring assessment and diagnosis happens within recommended NICE guidelines.
It was commissioned following a rise in waiting times for assessment and diagnosis, which was impacting on professional capacity and the timely support of children and their families. While the review was to focus on the diagnostic provision, it also needed to look at the other services across education, health and social care that link into diagnosis. The National Autistic Society was commissioned to carry out the review.
Key issues leading to review
The review was triggered by an increase over the past 5 years in autism assessment referral rates for children of all ages. This has led to waiting times that are lengthy and far exceed NICE guidelines. While the assessment rates have increased, there is still a backlog. The numbers referred are within expected prevalence rates for Islington, meaning that they are not expected to decrease going forwards, particularly with a rising local population.
The review took place between July and October 2016. This took the form of:
- over forty hours of telephone, email and face to face meetings with professionals
- parent carer consultation (led by parent carers) through two meetings and an online survey
- a consultation meeting with autistic young people
- assessment of a wide range of documents and data
The review discovered particular areas of good practice that can be built upon to inspire more service development locally and in neighbouring areas.
- multi-disciplinary make-up of the Social Communication Team (SCT) and Neurodevelopmental Team (NDT), with reviews of cases being carried out by a range of professionals
- current structure of one clinical manager providing strategic oversight is the best option to meet the variety of needs across the two age groups
- detailed feedback provided to families and professionals through a variety of methods including meetings, written reports and workshops
- post-diagnostic support provision including a ‘What is Autism?’ workshop, other topic-based workshops, parent carer training, and therapeutic interventions
- family therapy post based in diagnostic teams
- detailed report written for young people
- creative pilot initiatives, including adaptation of assessment processes and development of therapeutic groups (such as the SOS dietary sessions detailed below)
- partnership working, particularly between the NDT and The Bridge School, to support mainstream education provision
- training and intervention modelling in early years and school settings
- regular, robust data monitoring of diagnostic pathways, including evaluation and analysis of findings.
There were also a number of recommendations made, to encourage further developments following the review:
- additional short-term resourcing for diagnostic teams to reduce waiting lists and manage current capacity
- piloting of a shorter assessment route for children and young people with less complex presentations of autism
- maintaining two separate diagnostic pathways due to differing needs of age groups, with oversight from lead manager
- additional resources to expand therapy/psychology assistant roles to provide additional pre- and post-diagnostic support, and free-up clinician time for assessment and diagnosis.
Good practice in detail
Below are some of the good practice examples in more detail.
Post diagnosis: detailed feedback
A written report detailing the diagnostic assessment findings is provided to all families. A feedback meeting is held with families to go through the report. The meeting focuses on the child’s needs, rather than going into the detail of the condition. It helps to identify a family’s understanding and acceptance of the diagnosis, and their readiness to engage with any interventions. This allows for better planning of intervention services so that they are provided at the right time for the child and with enough support for the family to access. Parent carers are able to gain more general information about autism through post-diagnostic support.
A further meeting is also held with the child’s early years setting or school and parent carers, led by a member of the diagnostic team.
Another report is also written for young people. The young person’s report is always discussed with the parent carers first and is not given without their consent. It focuses on the young person’s strengths and what having autism means for them.
Creative pilots: Eat well clinic
A monthly Eat Well clinic offers strategies to improve eating behaviours and these are followed up by the diagnostic team. In addition, an ‘SOS’ group has recently been piloted for families with children with more significant eating needs (those potentially likely to require referral to more specialist services if needs remain unsupported). This is run by an occupational therapist and a dietician. This year it supported three children over eight weekly sessions of 90 minutes. All of the children experienced positive outcomes in the workshop and at home.
‘As a family we have been dealt with fantastically. My concerns were listened to at every stage. I was given lots information about what was going to happen at every stage of the assessment. I felt very supported by the team and it was very comforting and reassuring throughout the whole assessment and still ongoing.’ Parent carer
By bringing in an external consultant to carry out the review, Islington gained fresh insight into gaps in services and areas of strength. This enabled them to identify areas for potential development, with suggestions for transformation according to national and regional best practice. Islington was able to reflect on ongoing challenges, but also have reassurance in its ability to deliver with creative oversight.
There is some excellent practice evidenced in Islington, and the commitment, skills and passion of staff translates into services that are effective and have a strong positive impact on local children and families.
Professionals are engaged and responsive to feedback. Their initiative in problem-solving has already brought positive service improvements. The process of evaluation and review of pilot ideas, with encouragement from senior leadership, should enable this to continue. Parent carers are widely understanding of the limitations of services, but also passionate about improving the speed of their child’s access to quality services and support. Increased engagement with families and the incorporation of feedback into service improvements could drive forwards collaborative change, improving autism diagnosis for the benefit of children, families, professionals and the local community.
Date added: 17 February 2017