Digitising the paediatric neurodiversity pathway to support families to ‘wait well’
According to recent figures families are having to wait up to five years for an NHS Autism assessment. Whilst the government works to improve assessment waiting times, we ask what can be done digitally to adapt the current ‘referral’ model into an ‘immediate’ programme of care, where families are supported to ‘wait well’.
The result is the launch of an exciting project, with HCI working alongside teams at Torbay & South Devon NHS Foundation Trust and associated community organisations, to enhance the package of support available to families. Education, resources and digital tools, such as online assessment forms and behavioural diaries, will be developed alongside stakeholders, and hosted on HCI’s existing multiple conditions app, CONNECTPlus.
Currently there are 800 families on the waiting list for a neurodevelopmental assessment in Torbay and 1800 families in Devon. National waiting lists numbers are not known, but for example, in Bristol, North Somerset and South Gloucestershire, the ICS reports 1,862 under-18s are awaiting an autism assessment as of the end of October 2021.
In Torbay, families are waiting up to 80 weeks for a first consultation. The target time is 12 weeks and as a result families are suffering from heightened anxiety and frustration as well as ongoing behavioural struggles with their child. Over 50% of children waiting have current or previous safeguarding issues such as a child protection plan and the child's educational progress is also affected during this waiting period.
The neurodiversity pathway provided by the community paediatric service receives referrals from a number of routes – primary care, early years teams, school nurses and occasionally other services such as Speech and Language Therapy (SALT). There isn’t a standardised referral form and the quality of information in the referral is variable. 26% of referrals are rejected or redirected (to other services they may have been able to see more immediately) as they don’t meet the criteria or there is a lack of information to make a clinical decision resulting in the need for a further appointment, all of which exacerbate the wait time for families in need. The pathway requires multiple face to face appointments which slows the process and in some cases, results in unnecessary outpatient appointments.
The Initial Solution - First Steps Handbook
In order to address these challenges, a handbook, named First Steps, was devised by Torbay and South Devon NHS Foundation Trust’s Paediatric Consultant, Lisa Teoh, with a printed version used in a pilot study in 2020 (funded by the South West Academic Health Science Network (SWAHSN) during the COVID19 pandemic. All families with under 12s on the Trust’s pending list are being sent the handbook so that children can receive support as soon as possible. Families have been bringing the handbook to clinic and this, combined with joint working, has enabled the diagnosis and discharge of 95% of children in one appointment.
The First Steps handbook covers:
- Advice and guidance whilst waiting
- Empowering patients to have conversations with schools and other frontline services
- Signposting to additional resources / services who maybe better placed to support issues eg Speech and Language Therapy
- Capturing of information to aid assessment and triage
Some of the schools in the area, with particularly high numbers of children with SEN, have begun First Steps family focus groups structured around filling in the First Steps handbook, resulting in mini peer support networks.
However, despite its success in the Torbay and excellent feedback from families, schools and frontline workers, there have been a number of challenges including:
- distribution and printing (time and costs)
- maintaining and updating content
- managing version control
- parents having to type in websites to access resources
- parents finding it overwhelming in terms of the length of the document (42 pages, many optional) particularly for those with poor literacy which is often the case. Learning difficulties and neurodiversity very often go together with vulnerability and often run in families.
- parents and schools requesting digital version which is easier to access “out and about”
- generic advice being given which may not suit older children or more severely disabled
- text only, so need advice delivered by video for parents with low literacy levels or where English is not their first language.
Common feedback from schools and early years help include “this would be amazing as an app”
Next Steps - Digitisation
The development of a digital neurodiversity pathway using the CONNECTPlus multiple conditions app is the natural progression for the project. CONNECTPlus offers a multi condition approach to person centred care and has been co-designed with NHS clinicians and patients to make it easier to manage multiple conditions together and in one place. It currently contains 20 conditions (30+ in production) and over 60 health trackers and is being used by patients in Torbay and South Devon NHS Foundation Trust across rheumatology, diabetes and respiratory to name but a few.
Combining and digitising the information from the First Steps handbook, CONNECTPlus will provide resources to enable parents and carers to gain a better understanding of their child’s developmental needs and how they can support them, alongside newly developed health trackers, questionnaires and diaries in order to create live and detailed records that can be shared with clinical teams, therapists and schools.
Expected benefits include:
Improved quality of life
- Empower families to self manage their child’s behaviour in early years or whilst on a waiting list
- Improve parents understanding of their child’s needs and their ability to support them
- Overcome the misunderstanding that a diagnosis needs to be made in order to support their child
- Provide clear information, access to resources and tracking tools
Improved quality of care
- Improve decision making and triage through improved and more detailed data
- Reduce the risk of high priority cases being missed (safeguarding or vulnerability issues)
- Enable earlier recognition of need and support of other issues eg Speech & Language
Reduction in demand
- Reduce the volume of referrals
- Enable efficient one-stop clinic assessments, thereby reducing onward referral and increasing discharge rate
- Reduce community paediatric referral waiting times
- Increase number of empowered families using the app
- Reduce ’was not brought’ as reminders to attend appointments/clinics will be used
Improved clinical and system working
- Enable a joined up, family centred approach to the care pathway
- Reduce the pressure on the system (including frontline services, education and health) by ensuring that baseline support is provided for an adult or child’s needs so that frontline workers have a tool to support people prior to referral
- Enable joint appointments to be made through better quality referrals sent through a single pathway of health and therapies.
CONNECTPlus for Neurodiversity is currently in development. We welcome your thoughts on how it can be set up and personalised to be used in your region and/or expanded into adult care, so please contact email@example.com at HCI to discuss these opportunities.