Heartbreaking childrens’ hospice stories told by families

Tiny John Cumming, who features in the new documentary. Picture: Contributed: BBC Alba

Tiny John Cumming, who features in the new documentary. Picture: Contributed: BBC Alba

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AN unflinching, but honest, look at the life of five families whose children are living with life-shortening conditions in Scottish hospices is being screened tonight.

This first-ever behind-the-scenes documentary looks at the extraordinary stories and work undertaken at Scotland’s children’s hospices.

Eilidh Duncan. Picture: Contributed/BBC Alba

Eilidh Duncan. Picture: Contributed/BBC Alba

Tèarmann/Home from Home, being shown on BBC Alba, was given unprecedented access over four months to Rachel House in Kinross and Robin House in Balloch by Children’s Hospice Association Scotland (CHAS).

There are over 15,000 babies, children and young people living with life-shortening conditions in Scotland.

The hospices provide respite and palliative care to babies, children and young people, and the programme follows five families who depend on the incredible support offered by nurses and staff at both houses.

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Paul and Gordon Robertson at Robin House. Picture: Contributed: BBC Alba

Paul and Gordon Robertson at Robin House. Picture: Contributed: BBC Alba

That incredible support ensures that Rachel House and Robin House are places where parents can create lasting memories with their children.

This is a world where people aren’t afraid to talk about death, but prefer to focus on living life.

The programme charts the story of five-year-old Eilidh and her family.

The glitter loving girl from Alloa has a condition called Chronic Intestinal Pseudo Obstruction with intestinal failure, which means her digestive system doesn’t work properly and she is fed via a line which enters just below her heart.

Eilidh’s brother Cailean also has problems with his digestive system and the documentary outlines how the family deals with their children’s round-the-clock medical needs – and how Robin House provides much-needed respite for the whole family.

Rhona, Eilidh’s mum, said: “My whole life revolves around Eilidh and Cailean and making sure Eilidh’s medical needs are met. When I go to Robin House instead of being nurse and mummy, I can just be mummy.

“Many believe that a hospice is where people go to die and that’s not the case. It’s the complete opposite - it’s actually for living. It’s somewhere you can go and you can make memories.

“You can be a family and have time to do things that other families do that don’t have a medically complex child. Memories and life is exactly what Robin House is about.”

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Also featured in the programme are twins Kein and Kelsey, 16, from Arbroath, who are on a break away from home – and who are well-known to staff at Rachel House for both their fun and sarcasm.

One of the oldest in the children’s hospice, 25-year-old Paul from Airdrie, has his final visits before transitioning out of the service now he’s an adult.

He has a condition called Angelman Syndrome and has been visiting Robin House for the past nine years.

The programme also watches the neonatal team making memories with baby John, from Gorebridge near Edinburgh.

John has a condition called ARC syndrome and his family know he won’t survive much longer.

Sadly, since filming, both Paul and John have passed away.

The programme also visits Rachel House with the Broadley family from Falkirk whose son Lewis used the hospice for 11 years until his death a year ago.

But it is not just the patients and visitors who feature.

The documentary charts the vital roles played by both volunteers and staff, from administrative workers to nurses to chefs.

Housekeeper Janet has only worked at Rachel House for the past year but enjoys her job lovingly preparing bedrooms ahead of children arriving at the hospice.

Janet said: “I love it when I’ve met some of the kids and I know they are coming back in so I can make the room look nice when I know what they like. It is hard work but it is a very rewarding job.

“I remember when I came to work here and friends told me they couldn’t do that job.

“I would get a sympathetic ear when I told them I worked at Rachel House. It doesn’t need to be sympathetic because it isn’t what people perceive it to be. It’s a lovely place – families come here to make memories that last them for life.”

The programme was produced and directed by Lindsay Goodall for Bees Nees Media.

She said: “Rachel and Robin Houses, and the families you meet there, make you think differently about life.

“I learned something new and inspiring every day, and that’s stayed with me.

“I was a bit scared of visiting the hospices for the first time, but they’re truly special places which I miss spending time in, and I hope to share some of their magic with our audience.”

Tèarmann/Home from Home will be screened tonight on BBC Alba at 9pm.

It will be repeated on Sunday at 9pm and will also be available to view on BBC iPlayer.

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