St John’s awarded a community grant to Jessie May Trust, to support their core funding over a three year period. St John’s funding will enable them to build on the success of the first two years of operating in Bath and North East Somerset, with a view to creating a sustainable and independent children’s hospice at home service, to support a greater number of terminally-ill children from the area.  

Jessie May is a local charity that provides a specialist hospice at home service to children and young people that are terminally ill, in the south west.  They are the only charity in the locality offering this free palliative care service to children and the families who care for them, within the familiar and nurturing surroundings of their own home. They currently support nine terminally ill children and their families.

The three year community grant from St John’s Foundation will enable Jessie May to continue to provide terminally-ill children, living at home in Bath and North East Somerset, with an equivalent level of service to that already received by children living at home in Bristol. Upon referral, children from Bath and the surrounding areas, can now expect to receive the total Jessie May care package. In addition to the respite nursing visit, this includes:    

  • play and development opportunities for terminally-ill children
  • supported family days out to help reduce feelings of social isolation
  • respite day care services to enable children to form relationships with peers, build confidence and foster independence
  • sibling support  
  • social opportunities for parents
  • intensive end of life care when children tragically reach the last few days of life
  • bereavement support to all family members

This free service has given families the support they need to cope and to give them the physical and emotional resilience to ensure they make the most of the time they have with their terminally-ill child.

Fiona Foster, Trust Fundraiser at Jessie May Trust said “Your funding comes at a critical time for Jessie May as we look to further increase the number of children we are able to support. The funding over the next three years will give Jessie May the independence to accept referrals directly from health professionals and families alike, and in particular to be able to care for children that have until now fallen outside of the terms of the commissioning contract; children we haven’t been able to support.

“Without our Jessie May Trust nurses, many of the 127 families currently on our caseload would be virtually housebound. Families would become mentally and physically exhausted, socially-isolated, and siblings left feeling excluded and unable to participate in normal life. One of our mum’s describes her life like a “pressure cooker”. She has no time for herself having to provide round the clock care for her terminally ill daughter and whose condition has deteriorated so much in recent months that the family is now housebound. Yet this Mum also has to try and care for the rest of the family at the same time. She has no down-time. This is why our regular respite support forms such a vital part of our service ensuring families that we support, can take a break from the unending cycle of care.

This is where our professional nurses can make such a difference to both the child who is ill and their family. This is where St John’s support will make such a difference to local families, by empowering them, with our help, to be able to care for their child themselves at home for as long as possible.

“Where would we be without Jessie May? Life would certainly be a lot harder. Knowing that the other nurses are there to support us is such a comfort. Jessie May Nurses are lifesavers.”  

Parent, receiving support from Jessie May Trust

“Without this funding from St John’s, Jessie May Trust would not be able to continue to provide the full Jessie May service to families from Bath and North East Somerset in need of our hospice at home care. Your funding has given us the security to be able to continue to support existing families as well as raise the profile of our work locally to ensure that any local child who could benefit from our free hospice at home service is now able to access our support”

Julian Withers, Head of Fundraising and Communications at Jessie May Trust