Online fun from Clown Doctors is real lifeline for fragile children

A virtual hospice is providing smiles for Scotland’s desperately ill children, finds Sandra Dick

DR SQUEEGIE is locked in the isolation cupboard grappling with a very lively unicorn.

She charges frantically back and forwards across the screen, her red clown’s nose somehow managing to remain clamped to her face and the stuffed unicorn a blur of movement.

Shielding at home in Sauchie, Clackmannanshire, eight-year-old Ayla can tune in to watch the Clown

Doctors at play. It may not quite the same as seeing their silly antics for real at Rachel House in Kinross, but for families with sick, vulnerable children in isolation and unable to visit the children’s hospice in person, the daft clowns and their madcap exploits bring much-needed giggles.

For Alya, something of a medical miracle who against the odds is living with Edwards’ Syndrome – a condition that means most children usually die before or shortly after birth – and other sick children across the country with life-shortening conditions, Rachel House’s sensory room, whirlpool bath, fun sessions with the Clown Doctors and comforting care are currently now out of bounds.

But while non-urgent visits to the children’s hospice in Kinross are on hold, vulnerable youngsters – and their worried parents - instead have access to unique world-first “virtual hospice”, which is taking some of CHAS’S (Children’s Hospices Across Scotland) specialist care straight to their own homes.

Rapidly organised in less than a week, the virtual hospice is bringing families of some of Scotland’s most fragile children access to nursing, medical and pharmacy advice by phone and video; bereavement support; money and benefits advice; and practical advice around the coronavirus.

It is also providing a range of activities for highly vulnerable children now being shielded at home, including a storytelling service, letter writing sessions, activity packs, art clubs, exercise routines and those online Clown Doctors visits.

“It is a fantastic idea as Ayla really will miss her respite visits to Rachel House,” says her mother Caroline Johnstone, who has the added worry of Ayla’s dad Kerem, currently being away from home in Turkey.

“This enables her to stay in touch with the activities team and feel part of all the usual hospice goings-on.

“It’s reassuring to know that any time I need CHAS they are just a phone call away and I can access vital clinical advice any time, night or day.

“That truly is a lifeline, especially at the moment as I am extremely worried about the coronavirus given that

Ayla already suffers from breathing difficulties and has a weakened immune system.”

Just a cold can leave Ayla seriously ill – one recent episode saw her admitted to hospital and on a ventilator to help her breathe. And while the family has oxygen and suction equipment at home, having “virtual” access to the hospice’s specialists and nurses has brought added peace of mind.

“If those measures were not working she’d have to be taken into hospital, which is a frightening concept given the current situation and all the risks associated with hospitals right now,” adds Ms Johnstone.

“Our anxiety levels about all these things are definitely now heightened though as a result of coronavirus.

“It’s not just medical advice I get from CHAS – the emotional support I receive is invaluable. I have made so many friends and confidantes there over the years and truly cherish those relationships.”

Ayla’s rare genetic condition, also known as trisomy 18, means she suffers from seizures, skeletal issues, gastrointestinal problems, cognitive delay and breathing problems related to congenital lung abnormalities.

The children’s hospice at Kinross has provided support since she was born. Despite few children surviving beyond their first year, Ayla is continuing to thrive – which her parents credit to the team at Rachel House, where she receives regular respite every few months.

Rami Okasha, chief executive of CHAS, says the virtual hospice is fulfilling a crucial role for families who were already living with the