Social isolation is not new to families caring for children with life-limiting conditions. Many are used to long hospital stays far from home, long periods of illness preventing normal daily activities, being unable to attend school due to health needs, and sacrificing social interactions due to care needs.
But the Covid lockdown has brought many new and often terrifying challenges to these families, many of whom have seen care packages fall away and their wider support networks disappear in the wake of the global pandemic.
Children’s Hospice South West (CHSW), which looks after 550 families around the South West, has had to adapt its care model to continue providing the lifeline support the charity has offered since 1995.
Because of the significant risks and the vulnerability of children, routine respite stays at the three hospices – Charlton Farm in North Somerset, Little Bridge House in Devon, and Little Harbour in Cornwall – have been cancelled. But the hospices remain open for emergency and end-of-life care and the charity has developed a ‘hospice, home and virtual’ model to be able to continue caring for families wherever they are and whenever they need it most.
Alli Ryder, CHSW’s Director of Care, said: “For the first time ever, we have started working in the community, which has been an amazing transformation in our services.
“We have supported children in their homes providing night shifts when care packages in the community have fallen apart, enabling families to step in and care for their children in the morning.
“We have also been providing care for community children’s nurses, cover over weekends and evenings, replacing nasogastric tubes for example.
“Our care teams have been visiting families on doorsteps giving food parcels and lots of virtual support, including a virtual sibling and bereavement groups.
In a time of acute isolation, anxiety and worry for families, we are understanding how important that virtual touch base is.
During the last six weeks, the charity, which is funded almost entirely by voluntary contributions, has supported 102 bed nights at its hospices, carried out 335 community visits, and made 7,654 virtual contacts with families.
“That is an amazing achievement for us to deliver,” added Alli.
“It’s been an incredible time and we are very proud of our ability to adapt and deliver care to children and families when they need it most, wherever they are.”
CHSW needs around £11m a year to run its three children’s hospices and around 85 per cent is raised through voluntary donations. As a result of the lockdown, the charity had to cancel or postpone many of its fundraising events planned for the year. It has also had to close its 35 South West charity shops, although a handful are now trading again as part of a phased re-opening, with many more set to open in early August.
CHSW Director of Fundraising, Paul Courtney, said: “These are uncertain times for everyone but we have been buoyed by the many messages of goodwill and offers of help that we have received from our wonderful supporters.
Many have had fundraising events cancelled but are passionate about wanting to stand with families who need our love and generosity now more than ever.
The charity has organised virtual Rainbow Runs and cream teas, and supporters have also been busy organising virtual fundraising events in their homes, from online quizzes to fun, sponsored stay-at-home challenges.
It has also asked supporters to ‘Be Incredible’ and do ‘whatever they can, however they can’ to help counter a fundraising shortfall. A new Facebook Group, ‘Be Incredible with Children’s Hospice South West’, already has more than 700 members, with many supporters sharing fundraising ideas, as well as tips on keeping safe and looking after their mental well-being and physical health during lockdown.
Paul added: “It’s been amazing to see the community of CHSW supporters being incredible and coming together to help the charity and each other through these challenging times.
“It is vital that we still maintain our levels of fundraising income to ensure that we can continue to be there for children and families, both now and into the future, and we can’t thank everyone enough for their support.
“Across the South West, many people don’t know what the coming months will hold, but we can all do something now to play a huge part in our future.”