Coronavirus: Virtual hospice 'lifeline' for children

By David Cowan
BBC Scotland

  • Published
Caroline and Ayla Johnstone
Image caption,
Caroline and Ayla Johnstone at their home in Sauchie

Ayla Johnstone's fragile hold on life is at greater risk than ever before because of coronavirus, but a new "virtual" hospice is offering her vital support while she and her mother self-isolate at home.

The eight-year-old, from Sauchie in Clackmannanshire, was born with Edwards' syndrome, a rare genetic condition, and has a weakened immune system.

She also suffers from seizures, skeletal issues, gastrointestinal problems and breathing difficulties.

Children with Edwards' syndrome usually die before or shortly after birth, and very few reach their first birthday. Now eight-and-a-half and something of a medical miracle, Ayla faces new dangers and challenges.

Image caption,
Ayla would usually visit the Rachel House hospice

Ayla and her mother Caroline are self-isolating, which means she can no longer receive respite support and care at Rachel House, one of two children's hospices in Scotland, which have had to restrict their activities during the lockdown.

The two facilities are run by Children's Hospices Across Scotland (CHAS). The charity's chief executive Rami Okasha says they normally work with about 500 Scottish families who have children with life-shortening conditions.

He says that because of the coronavirus lockdown and social distancing restrictions the children's hospices are focusing on emergency and end-of-life care.

However, that means there are people like Ayla and her family who are isolated so they launched a "virtual" hospice to help them.

"We've got nurses, doctors, pharmacists and other specialists on hand and we offer health advice and medical advice but we also offer fun for children," Mr Okasha said.

"We've got clown doctors being beamed into children's homes and we have activity packs and play specialists."

Image caption,
Clown doctors are part of the virtual entertainment for hospice children

He adds: "Knowing that your child will die young is the hardest thing and the coronavirus makes everything even more worrying.

"All the stress that goes with that is magnified and amplified so families need help and that's what we're trying to provide right now."

Ayla's mother Caroline describes the virtual hospice as "a lifeline".

She says: "It is a very stressful situation for everyone but children with a life-limiting condition are particularly vulnerable.

"I think it really hit home when I got the letter from the Scottish government, saying you're in that group that needs to self-isolate for 12 weeks."

She says that the virtual hospice is amazing both practically and for emotional support.

"We're also lucky as we still have an NHS careworker who comes in to help every night, and Ayla's keyworker is in constant contact," she says.

Through the virtual hospice, Ayla has received a visit from clown doctors from the charity Hearts and Minds.

Its chief executive Rebecca Simpson said: "The children will still get some light relief, they'll still get laughter, they'll still have songs and poems and games but it will now just be virtually as opposed to face-to-face in the same room.

"We all know that at times of crisis laughter can build resilience. We are just hopeful that we can do for that CHAS and we're delighted to keep our service going as much as possible."

Caroline says that despite everything she and her daughter are going through, she's determined to stay positive.

She says: "For me personally I have got back in touch with people I haven't spoken to in 20 years.

"People have been checking in on us and offering to help in little ways such as leaving a loaf of bread on our doorstep.

"It's a time and an environment that none of us have seen anything like this at all, and it's very frightening, but I've seen a sense of community and people pulling together to help the most vulnerable in society.

"I think when we look back on this, yes it will be one of the scariest times outside an actual physical war but it will also be one of the defining moments when we see a return to real community spirit and generosity and kind-heartedness in people."