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NUH nurse in video call with Duke of Sussex
Rachel Gregory, Long Term Ventilation Nurse Specialist from Nottingham Children’s Hospital took part in the video call hosted by the Duke of Sussex with families caring for seriously ill children at home, supported by WellChild, to understand their challenges during the COVID-19 crisis.
WellChild, the national charity for seriously ill children, has published the whole 30-minute video call on YouTube at: https://www.youtube.com/watch?v=FJyS5zFefzM
On 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. 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.
NUH 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”.
Craig Hatch from Cumbria cares for his son Fraser, 21 years old, who has cerebral palsy and is a full-time wheelchair user. 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. There are lots of issues around Personal Protective Equipment. 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, scoliosis and multiple complex 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.”
Due to COVID-19, Rachel and her team at NUH have adapted quickly in response to the challenges brought by the pandemic for these families, and continue to put plans in place to ensure the families and children receive the same high quality care and support. Where absolutely essential, home visits are still being conducted, but in the main services have moved to virtual means using video conferencing with the families and children. The team have put families in touch with other families so that they can talk to others in the same situation and support and help each other. The team at NUH have also set up a new website which features a COVID-19 Q&A for the children and their families, training, information and support. There is also a hotline for parents to call to directly contact Rachel and her team.
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!”