3 minute read
HOME HELP FOR HEROES
HOSPICE AT HOME HEROES Children’s hospice credits Wooden Spoon support with restarting visits
WHEN Jessie May’s funding “dried up overnight” as a consequence of coronavirus’ ripple effect, the children’s hospice at home service faced the dual challenge of paying its nurses and procuring the personal protective equipment (PPE) necessary for them to continue to deliver care.
Restricted by social distancing regulations and facing a daunting deficit, the West Country-based charity had no choice but to pause its support of families throughout Bristol, South Gloucestershire, Somerset, Wiltshire and Bath.
For those with a loved one with a terminal or life-limiting illness, the loss of expert outside help would have been felt keenly, according to Jessie May CEO Chris Roys.
“As you can imagine learning that you have a child who is going to die is extremely emotionally distressing and stressful, so we support families through that journey from the point of diagnosis right the way through to when the child reaches the end of their life,” he told Spoonews.
“We also support the families with end of life care. Many parents choose for their child to be able to die at home where they are surrounded by their family, friends, toys, pets and all those sorts of things, and we can be there for that.”
A £5,000 donation from Wooden Spoon Bristol and Bath helped to ensure these invaluable services could resume, allowing the charity, which was set up by the parents of Jessica May Purrington – a little girl who died at home aged four months, surrounded by her family and her nurses, to meet the cost of visits.
“Our funding largely dried up overnight,” said Chris, explaining how the cancellation of its own fundraising events and those of regular community supporters and sports clubs had hit the charity hard at a time of increased need.
“Reduced funding means a reduced service. In normal times a lot of the children would have been going to school and had other
services coming in, but all of that stopped and the families were left to fend for themselves.
“It has been a real challenge to raise funds, so the support of Wooden Spoon has been great. Thanks to the funding, we quickly got the PPE sorted out and were able to start doing visits again.
“We prioritised those children who were most at risk of being hospitalised because at that time we were very anxious about exposing them to danger and also wanted to try to relieve the burden on hospitals.”
Due to the restrictions in place, the number of visits conducted by nurses did fall, but were compensated for by the introduction of online services, with Jessie May’s new way of remote working including regular phone calls to parents and video calls to deliver bedtime stories to children.
The easing of lockdown over the summer has done little to diminish the demand on the charity, with special schools heavily restricted in who – and how many – they can welcome back to class.
“We are now prioritising those children who aren’t able to go back to school,” continued Chris. “The families are having to deal with care all of the time and that means they can’t go back to work.
“If you are caring for a child 24-hours-a-day, the stress and the emotional strain is huge. I admire those families who have been through this period and have come out of the other end still standing. It has been hugely difficult for them.”
Bringing respite to these deserving households should be a source of immense pride for supporters of the children’s charity of rugby, concluded Chris.
“We have been able to help in a small way and without Wooden Spoon we wouldn’t have been able to do that. Thank you ever so much for your support, it really has made a difference.
“Obviously, the families would like us to be doing more but we have been constrained in so many ways.
“We have been reassured that the telephone and video support has been helpful; just knowing that someone else is thinking about them and being able to offload and share some of the struggles is really important.”
