This page will set out the core offer made to families referred to and accepted by the Jessie May service. The intention is this will replace any interim arrangement that has been in place since June 2021, the aim is to reset the service offer to a post-COVID arrangement, and it is acknowledged this is different to what was provided before March 2020. In doing so, providing clarity of expectation to those families accessing the service, and professionals referring into the service.

Core Principles:
  • Service provision will be equitable across the geographical localities served by Jessie May – currently including Bristol, North Somerset, South Gloucestershire (BNSSG), and Bath and North East Somerset (BANES), Swindon and Wiltshire (BSW) Integrated care system localities, formerly Clinical Commissioning Groups (CCG).
  • Service Provision routinely provided Monday to Friday across all locations within the hours of 0900-1700, by exception outside of these hours.
  • End of Life care and support will be prioritised and provided in partnership with local health providers – the frequency of visits and level of support will be determined following assessment of need, capacity of the service and requirements of partners working together to meet the need
  • Allocation of care and support to children and families will be determined following assessment using the Jessie May ‘Framework for Respite in Partnership with Parents’ (FRiPP) scoring system.
  • The care provided will be reviewed on an annual basis, at which time the FRiPP will be reviewed. Should the needs of the child / family escalate and change significantly prior to the annual review, this review will take place sooner to reflect the changing level of need.
  • Provision of care in the child’s home will be set at 3 hours duration. Jessie May is aiming to move towards operationalising fixed day allocation of visits where feasible – supporting effective and efficient planning of staffing resources available. Changes to this can be requested however can’t be guaranteed to be accommodated and will be subject to availability of the Care Team. Visits not used or cancelled either by the family or Jessie May will not be accrued (banked) for future use.
  • Support outside of the family home will be provided by negotiation to best meet the individual needs of the child and family where service capacity allows – this will include: support in hospital whilst an inpatient, support for clinic appointments, support for exceptional events and where possible requests made at short notice will be considered and accommodated if capacity allows.
  • As an organisation we will aim to provide family events throughout the year to support the coming together of families within the wider Jessie May community, and the collective experience such events offer families. We will aim to offer 1 event in the Easter holidays, 1 in May ‘half term’, 2 in the summer holidays and a Christmas event (late November / Early Dec). Such events may include face-to-face, as well as those delivered virtually, and for events that are planned face-to-face the geographical location of such events will be within the service area, and not necessarily specific to one locality – it is anticipated events would be rotated so as to reach the majority of service users however, not consistently in one location.
Eligibility / Meeting Jessie May Criteria for referral and acceptance:
  • As an organisation we recognise the advances in medical treatment, and as such children may be referred to Jessie May where life expectancy is uncertain. Should life expectancy and prognosis improve, working in partnership with families, we would plan to discharge your child from the service supporting a return to a more ‘normal’ life reflecting the positive changes identified.
  • For those families when scored on the FRiPP who aren’t eligible for home care visits, possibly resulting from children predominantly attending school during term time, home care support in such instances directly for the child or young person will be paused.
  • We do however recognise that where there hasn’t been a change in prognosis you will be continuing to live with uncertainty and complexity of care needs every day. We would therefore aim to provide some care provision during the school holidays recognising that during this time you don’t have the support of school teams, and coping with increased demands at home – we acknowledge this may not include every school holiday, and could be a combination of individual provision versus wider family events.
Additionally we would aim to continue to offer you:
  • Phone contact and support throughout the year, and regular service wide communications. This would be negotiated with you as we recognise not all families would require such input from us as an organisation.
  • Support visits where required, however not caring for the child if attending school
  • Notification of and access to service wide family events.
  • Requests may be made for events deemed exceptional / emergency where support is required.
  • Should your child’s needs change and is unable to attend school then the FRiPP will be reviewed.

We do however need to highlight that where children are eligible for regular school provision with needs predominantly met in school, in such circumstances we won’t provide care visits at home where children are taken out of school with the primary reason being to be able to access the support provided by the Jessie May Care Team.

As a result of providing holiday time care visits and support to families for children who usually attend school, there may be a reduction of visits to those children who we do visit during term time – care provision will therefore need to be flexed according to capacity and assessed need.