Equipping Wiltshire's first children's hospice
Julia’s House, which cares for children with life-limiting conditions, is building a much needed children’s hospice in Devizes – the 1st in Wiltshire. It will be a hub for play sessions and sleepovers, but also a refuge at the end of the child’s life. We seek funding to equip the end-of-life suite.
December 2016 - February 2017
Julia's House - The Dorset and Wiltshire Children's Hospices
Wiltshire, a rural county with poor transport links, is one of 2 major UK counties without a children’s hospice. Families facing the loss of their child have to travel to hospices in other counties: a drive of 90+ minutes in good traffic. Travelling with a very ill child is always difficult as children may have frequent seizures or stop breathing without warning. But at the end of the child’s life, a long journey is unbelievably stressful and traumatic for everyone involved.
We’re building a children’s hospice in Wiltshire – a bright, welcoming ‘home from home’ for play sessions, sleepovers and, sadly, end-of-life care in the ‘Pegasus Suite’. The Suite comprises a child’s bedroom, family bedsit and en-suite where the family can stay together during the child’s last days or weeks, with full support from our nurses. After death, a cuddle cot/cooling blanket can be used to cool the child’s body so the family can stay at the hospice and say goodbye in their own time.
Enable Wiltshire families to receive end-of-life hospice care in their own county
Activities» Equip the Pegasus Suite with all equipment necessary for the child to receive specialist medical care in comfortable surroundings.
» Create a welcoming, comfortable bedsit where the whole family can stay/eat/sleep during those final days or weeks.
» Provide a cuddle cot/cooling blanket to keep the child’s body cool after death, allowing the family to say goodbye in their own time.
By monitoring use of the Pegasus Suite by families for end-of-life care; via formal feedback during the Annual Care Review held with each family.
Create a flexible space that can also be used as 2 bedrooms for fun-packed hospice sleepovers
Activities» Decorate the bedroom and bedsit neutrally, concealing medical equipment and fitting it out for everyday use by children with a range of conditions.
By holding successful sleepover events and via positive informal feedback from families.
It will create a long-term resource for Wiltshire families by equipping a key area of the new hospice. End-of-life care in the Pegasus Suite will have lasting impact, reducing the trauma experienced by families, giving them space and time to come to terms with their loss. In happier times, sleepovers are a beacon in the child’s life – a fun-packed weekend with friends while families get a vital break. We evaluate the success of our work through annual reviews and continually adapt to feedback.
The only risk is that we are unable to fully fund the hospice, but we’re confident – we’ve already secured £1.36M towards the £2M cost and are fundraising intensively to meet the shortfall by February 2017. We have a strong track record of providing support for families with seriously ill children and received an ‘Outstanding’ rating from the Care Quality Commission (2015). Risk assessments are carried out for all hospice sessions and full safeguarding policies are in place.
We’ll send all donors a link to a campaign film showing the hospice in its ‘before’ stage, followed by an end-of-project report on the hospice build and Pegasus Suite, containing photos and quotes from families. Generous donors who give over £250 will be invited for a private hospice tour.
Budget - Project Cost: £38,799Loading graph....
Amount Heading Description £9,577 Furniture for child's bedroom Including specialist bed, twinkling ceiling lights, cuddle cot and cooling blanket £3,250 Furniture for family bedsit Including orthopaedic sofabed, wardrobe, TV etc £5,000 Kitchenette for family bedsit Facilities for families to cook during their stay £6,671 Hoist system Enabling children to be moved safely and with dignity in the Pegasus Suite £14,301 Specialist bathroom equipment Powered washbasin, toilet and wheelchair-friendly shower for fully accessible en-suite bathroom
Current Funding / Pledges
Source Amount Dialog Semiconductor £8,000 Guaranteed Wates £6,671 Guaranteed Smith family (bereaved Julia's House family) £1,570 Guaranteed Lifelites £200 Guaranteed
The new hospice will be in Devizes, centrally located so as many families as possible can access it. Our research shows that families will travel up to 45 minutes to reach a hospice so the Devizes ‘catchment’ covers almost the whole county. We will provide weekly respite for families across Wiltshire, at home or in the community, but the hospice will be a central hub for our nurses, a second home for families and a place where poorly children can come throughout their lives and at the very end.
Our Wiltshire families come from a variety of financial and social backgrounds; currently 23% are from the armed forces. Of 26 children cared for to date, we’ve sadly provided end-of-life care to 9; mainly late-stage oncology referrals. The poorly children will benefit from access to magical fun-packed sleepovers but also end-of-life care in a known, trusted environment, without the stress of being transported to an unfamiliar hospice many miles away. Families will be less stressed as a result.
Julia’s House provides a unique and award-winning model of care: no other children’s hospice offers the same combination of frequent respite and palliative care, as well as providing support for the whole family. Since 2003 we’ve established a strong track record in Dorset and now Wiltshire, receiving an ‘Outstanding’ rating from The Care Quality Commission at our last inspection. Our beautiful Dorset hospice provides a successful model which we can replicate in Wiltshire.
Read more about the Charity running this project.
Facilities Manager Andy oversees the hospice build on behalf of Julia’s House, liaising with project team and contractors.
Surveyor Rebecca works for Wates Construction and handles the financial management of the project. She’s also the mum of a Julia’s House child.
Our Lead Nurse Heather oversees the care service in Wiltshire and is involved in detailed design of the hospice rooms and equipment.
Could enable a child to have a morning at the hospice with our specialist care team
“We are thrilled and excited to hear the great news that Julia's House is ready to start work on the new hospice in Wiltshire. This new specialist facility will make a huge difference to us and so many other families like ours. We can't wait for its arrival.”