Supporting young people with severe learning disabilities and behaviours that challenge can be very expensive, costing (on average) £265K and £300K per year for out of area residential schools and in-patient admissions, respectively. Use of these specialist services contrasts with the most usual local support costs of around £100K, shared across local budgets. Being supported at or close to home is almost always preferable to young people and their families, and advocated by national and local policy.
A former CLAHRC-EoE research fellow from Cambridgeshire had, as his CLAHRC research project in 2015, reviewed the processes that led to children and young people with such problems being placed in ‘out-of-area’ 52-week residential schools or hospital. His research had led to the establishment of a county wide intensive support team that used an evidence-based approach (PBS – positive behaviour support) to support young people to remain at or close to home and avoid these out of area placements.
The ARC’s implementation challenge since 2019 has been to extend the PBS approach to neighbouring Peterborough, one of the ARC’s Populations in Focus.
The ARC Implementation Leads convened a planning group consisting of the ex-CLAHRC Fellow/ PBS team’s lead clinician, the CCG’s lead for Transforming Care and other key players to plan the implementation of an intensive PBS service in Peterborough.
The group established a community of practice (CoP), comprising carefully-chosen influential practitioners and commissioners from Peterborough and Cambridgeshire and a representative from the local parents’ group. The implementation leads facilitated the CoP to ensure that all aspects of the introduction of PBS were discussed fully. Having invited other key people, including from education, care and the voluntary sector, to join them, the CoP met again a month later. They continued designing the service based on the research evidence, local experience and anticipated challenges, and set about agreeing their success criteria (outcome indicators). A third meeting agreed the likely pathways of care, planned how to manage expectations by disseminating accurate information about the service, and finalised the choice of criteria against which to evaluate the new service. By now, 14 people had been involved in the CoP and a final meeting had been planned for May 2020 to review the success criteria and to plan further roll-out. This was postponed due to Covid-19. However, the CoP’s core planning group of 5 individuals still meets remotely, monitoring progress.
An ARC-facilitated workshop in January 2020, featuring a national leader in the field, and designed to promulgate a PBS approach across the entire county, attracted ~50 attendees. It sowed the seeds of further roll-out among a wide range of relevant professionals across the county, but this wider roll-out has been interrupted by the pressures of the response to Covid-19.
The PBS team is now in place in Cambridgeshire and Peterborough, with funding guaranteed until 2022. To help justify the use of public money to fund this team, the CoP core group arranged for an economic analysis comparing the work of the PBS team in helping YP to remain at or close to home, with likely alternative scenarios (some of the YP going on to be placed in 52 week residential schools or hospital). This analysis was delivered by a member of the ARC EoE’s Health Economics and Prioritisation Theme, along with the lead PBS clinician/ex-CLAHRC Fellow and a member of the core ARC team. The results estimated that with annual funding of £350K, the PBS team successfully supporting young people to remain at or close to home leads to annual cost savings of £1.7-2.5 million by its fourth year (assuming half of those supported would otherwise be placed out of area).
In addition to cost savings, being supported at or close to home is almost always preferable to the young people and their families, and is consistent with national policy. To date, 16 of the 17 those supported by the PBS team have remained living at, or close to, home.