The Duke of Sussex videocalls UK families of vulnerable children, supported by WellChild
During the Easter weekend WellChild Patron, The Duke of Sussex, conducted a personal video call with families caring for seriously ill children at home, supported by WellChild, to understand their challenges during the COVID-19 crisis. Also on the call was a WellChild Nurse and WellChild CEO Colin Dyer.
During the call, The Duke heard about the challenges of social isolation and the fears of families reliant on carers coming into their homes to help with the round-the-clock, complex medical care that their children need. He also heard how many who have not been included on ‘vulnerable’ lists were struggling to access support and basic supplies.
Craig Hatch from Cumbria cares for his son Fraser, 21 years old, who has Cerebral palsy, Epilepsy, Neuro muscular scoliosis, Osteoporosis, Chronic lung disorder and Type 1 diabetes. He said: “It’s scary. We are frightened because we know that if the virus gets in our house and if Fraser contracts the virus, the implications are quite severe.”
WellChild Nurse Rachel Gregory, who supports children and young people who require long term ventilation across Nottinghamshire, Lincolnshire and Derbyshire highlighted the worries that families have about letting external carers into their home. She said:
“These children need round the clock care, twenty-four hours a day. You can’t expect parents to do that on their own. They have to open their doors at this vulnerable time to external carers, which is a huge concern for them.
There are lots of issues around Personal Protective Equipment (PPE). The guidelines come out, but often the supply seems to be lacking or slow to be fulfilled. If we can get that sorted then there can be an element of reassurance for families and carers.”
Leanne Cooper from Lincoln, whose 13-year-old daughter Sophie has Cerebral palsy, Dystonia, Scoliosis and multiple complex medical needs said: “There is a lot of information out there, but not a lot for vulnerable families and certainly not for children with complex medical needs. If we’re in a position where carers can’t come to work because they might be symptomatic, there is no way we would survive when Sophie needs care seven nights a week, seven days a week, twenty-four hours a day. It is terrifying.”
In particular, the Duke heard how some families were struggling to be recognised on ‘vulnerable’ lists, causing difficulties in accessing supplies, from food to PPE. He also heard how families across the country were giving mutual emotional support to one another through the charity’s online community, the WellChild Family Tree.
When asked by The Duke what society can do to help, WellChild CEO Colin Dyer said: “Things like PPE have been in the news a huge amount, but other basic supplies are needed from food, to cleaning products. A lot of families are finding it difficult getting themselves included on ‘vulnerable’ lists. These families are always isolated and hidden. Now they are more isolated and more hidden than ever before. Getting recognition that they are among the most vulnerable people that we’ve got in this country is really tough because the focus just doesn’t seem to be on families like this.”
The Duke, who has been Patron of WellChild for more than 10 years, asked about how the charity, which is totally reliant on voluntary funding, was coping following income lost through the cancellation, or postponement of key fundraising events and activities.
Colin said: “On the one hand, WellChild and lots of other charities are in the middle of trying to adapt to help the very people we are here to help, but on the other hand we are in survival mode. We are trying to make sure that we can access as much funding as we can so that on the other side of this, we are still here, because families will need us more than ever.”
In a touching moment, The Duke asked to see the children and sent a message of encouragement to the families and their children, who had all joined the call.
The Duke said:
“Full respect to every single one of you. This is hard on everyone, but it is especially hard on you. I know that WellChild are doing everything they can to support you."
Hopefully, through this video we can make it more clear and obvious to Government and everybody else that you are in the ‘vulnerable’ bracket and WellChild needs more help.
It is really nice to see you all smiling and happy. Keep going, keep the morale up, keep busy, keep being creative, dare yourself to try new hobbies and I hope to see you all again very, very soon!”
