Supporting the families of children with life-limiting or life-threatening conditions.
There are 49,000 children and young people in the UK with life-limiting or life-threatening conditions. Families receive little practical support at home with the day-to-day care of a very sick child, which in turn makes everyday life, and care of other siblings, a challenge. Research shows there is tremendous unlocked potential to engage local volunteers, who could make a real difference to these families.
The Royal Foundation and True Colours Trust have been working together since 2014 to develop a jointly-funded programme to test an innovative way of supporting these families. The programme partners volunteers with families to provide practical support in the home.
Phase 1 of the programme, coordinated by Volunteering Matters (formerly Community Service Volunteers (CSV)), was conducted at two Pilot Sites; East Anglia Children’s Hospice (EACH) and Children’s Hospice Association of Scotland (CHAS). Phase 1 recruited 71 volunteers, and supported 56 families during an 18-month period (ending in December 2015).
Volunteers undertook a total of 367 visits to families independently and 39 visits alongside home care teams. Volunteers spent 1,054 hours providing practical support, including gardening, housework, pet walking, cooking meals and sibling support.
When you are living this kind of life it’s the little things that matter and make the biggest difference.
100 percent of families reported that having a volunteer increased the amount of time they had to spend on things that matter to them, and helped them feel less pressured or more able to cope. Additionally, 100 percent of volunteers recruited said they had a positive experience of volunteering.
A key goal of this programme is to build the capacity of palliative care organisations across the UK to work with volunteers on an ongoing basis. In the next phase, the aim is to build on the existing palliative care support in three new pilot site locations: London, Bristol and Coventry/Warwickshire. Working again in partnership with True Colours Trust, The Royal Foundation has initiated a partnership with Together for Short Lives (TfSL) – the national body of all children’s palliative care services. Acting as the national co-ordinator, TfSL will manage multiple delivery partners at the three pilot sites, which include a hospice outreach service, an NHS Community Care Team, and a large children’s hospital. The pilots will run for 12 to 24 months, and each pilot site will aim to support 30 families.
A pilot extension of this programme will also be continuing independently at the EACH Treehouse facility. EACH will also aim to roll out the programme across their hospices in Milton and Quidenham.
- True Colours Trust
- Volunteering Matters (formerly Community Service Volunteers (CSV))
- East Anglia’s Children’s Hospices (EACH)
- Children’s Hospices Association Scotland (CHAS)
- Together for Short Lives (TfSL)
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