Baking and arts and crafts sessions are helping Olivia, 13 Case study
LIKE most other teenagers, 13-year-old Olivia is missing her school friends. And her new-found spare time is spent like many others: she’s helping mother Gwen Westgarth bake and cook.
The results may be tasty, but her rare metabolic condition, Propionic Acidemia, means she can’t eat what she makes.
Diagnosed shortly after birth, Olivia’s condition means a non-functioning enzyme can’t break down certain amino acids in protein, so toxins can build up in her system.
The virtual hospice means her mother can call CHAS specialists at any time, night or day, while Olivia can still take part in her beloved arts and crafts sessions and participate in other fun activities, such as visits from the Clown Doctors.
“It’s wonderful because it means Olivia still feels part of
Rachel House and it’s great for me too because it means I have round-the-clock access to medical and pharmaceutical advice,” says Gwen, from Dunfermline.
“This truly is a vital lifeline and it is hugely reassuring to know I can always just pick up the phone and get answers to any questions I have, night or day.”
Gwen has particular concerns over how coronavirus might affect Olivia: “I am very worried as she was in hospital with an difficulties of caring for a sick child even before the current pandemic.
“This is an incredibly difficult time for everyone, particularly for families caring for children who will die young. CHAS will be alongside those families in every way we can and that’s where our virtual hospice comes in.
“Many families we support are self-isolating and our two hospices have to prioritise end-of-life and crisis care right now.
“For families who can’t come to the hospice, we will take our hospice to them. Our nurses will be reaching out to families to offer advice and support. Our dedicated volunteers will make friendship calls to ensure parents never feel alone.
“Our specialist teams are on hand to provide clinical advice and keep children smiling with a suite of great activities. We can do all that, ensuring face-to-face care is prioritised for emergencies and crisis.”
The charity is using Zoom and Skype upper respiratory infection, so her immune system will be down.
“I also worry about catching the virus myself and who would look after Olivia then.
“Even though Olivia can’t eat, she loves to bake and cook so we have been doing lots of that and CHAS are going to send her activity packs, which she’s really excited about.
“We’re trying to do lots of different things and generally just stay upbeat.”
This enables her to stay in touch with the activities team and feel part of all the usual hospice goings-on
to provide calls from doctors, nurses and play specialists who offer daily activities to keep children entertained. It includes virtual visits from the Clown Doctors service, which normally tours children’s wards and the hospice.
“The Clown Doctors were devastated that they weren’t going to be able to see children face to face,” says Rebecca Simpson, cjhief executive of Hearts and Minds, which runs the Clown Doctors service.
“We can’t replace human contact, but we were able to use Zoom to bring the clown doctors into children’s homes to help make people smile.”
Back in Sauchie, the virtual hospice and kind gestures from the local community have brought comfort at a particularly difficult time, says Ms Johnstone. “Each day we are hearing about so many amazing acts of altruism and kindness between strangers and communities,” she says. “It is these small acts of kindness that will get us all through these challenging times.”