There are estimated to be 99,000 children with life-shortening or life-threatening conditions in the UK, and this figure continues to rise as advances in medical science mean more children with life-shortening conditions are living longer. These children require specialist support, often needing 24 hour care and regular medical interventions, which can lead to parents becoming exhausted and unable to cope. According to the UK’s Disabled Children’s Partnership, in 2019 only four in ten families with seriously-ill children received support from their local authority and only once they had reached crisis point. During 2020, these services reduced still further with only one in ten families receiving any support at all.
Julia’s House exists to reach these families and provide the expert nursing and care support they need before crisis sets in and they reach breaking point.
Every family uses our services in a different way to suit their individual needs, but much of what we do is based around giving vital respite care, which was never more important than it was in 2020 as COVID-19 hit. During the year, we delivered over 16,000 hours of face-to-face care across Dorset and Wiltshire, supporting frightened and isolated families through the toughest of times, keeping their children safe and providing a familiar and trusted face during the crisis.
We have a hospice in Dorset and in 2017 a beautiful new hospice was opened in Devizes Wiltshire. This was funded by a few very generous supporters of Julia’s House, which allowed the construction of the hospice to be completed in record time, and for Julia’s House to expand its vital services and start to support families across Wiltshire. However, whilst the capital appeal was a great success it did not gain the grassroots support that it might have done had the capital appeal been over a longer period of time, allowing for more awareness and community support to be established as it had been in Dorset where local fundraising supported community nursing for several years before the hospice was built.
Since the capital appeal, Wiltshire fundraising income has not been able to fully support the Wiltshire hospice, which needs approximately 1.5 million pounds to meet the costs of providing our services to support children with life limiting conditions across the county. Following an extremely challenging Covid-19 affected year in 2020 this has meant that Dorset voluntary income has funded our care in both counties, which is unsustainable. Without addressing this issue, our reserves will diminish over time and waiting lists will need to be introduced and hours cut for the families we care for.
Our ambition is for the community of Wiltshire to be aware of and maintain an active interest in the hospice, and for the Wiltshire care service to be self-sustaining, through public and corporate support. The Wiltshire team is currently hard at work having created a new brand identity for the hospice and secured significant media coverage both in the local and national press. We are looking to work closely with corporate and local companies within Wiltshire and Swindon to help us expand our awareness and raise the vital funds needed to allow us to keep supporting our existing families and to reach out to others that need our support.
We are very much looking forward to re-connecting with Salisbury Chamber of Commerce and send our kindest regards