FEATURE ARTICLE:
When is a hospice not a hospice?

by Jacqueline Alexander

Helen House was the world's first children's hospice. I went along to find out exactly what a hospice is. Get ready to let go of any preconceptions, you may be surprised...

In a world where we are constantly bombarded with information on how to live longer and look younger, the opening words of Sister Frances, founder of Helen and Douglas House, resound around my head seeking a comfortable place to rest.

"It is not about how long you live, but how deep."

This is the message of Helen House and I can't help thinking they're on to something. It surely wouldn't be a bad idea if it became the message by which we all live.

Before this week, I only had a vague idea of what a hospice actually was. Apparently, many people have a preconceived idea that a hospice is a place to die. This is wrong. A hospice, particularly this hospice, invites its guests to enjoy a quality of life seldom available to a child, particularly a child with a life-shortening condition. And the invitation is extended to the whole family.

Harry Pickering, featured in the Helen House video, is a beautiful, blond, angelic-looking young boy with the mischievous twinkle in his eye that every child should have. As I watch, I find myself wanting to meet him. It is a shock when the narrator tells me he suffers from Spinal Muscular Atrophy. I have no idea what that is, and watching the images of Harry, I am no wiser. He looks just like any other happy child. My emotions jar as I discover that Harry died, aged just six years old, at Helen House.

Harry's mum, Lizzie, tells me how she and her family strived to live a normal life together.

"It was difficult," Lizzie explains. "We wanted Harry's life, and our lives, to be as normal as possible but it wasn't always easy. Harry needed to be turned every hour during the night so sleep deprivation was a constant problem. Finding Helen House changed our lives and gave incredible support, comfort and relief to our family. We handed over Harry's condition and we kept Harry."

Opened in 1982, Helen House is the brain-child of Sister Frances Dominica. After becoming friends with the parents of a little girl who was seriously ill, Sister Frances offered to help and, on occasions, looked after their daughter to give her parents a break. The little girl's name was Helen.

Seeing the need to provide both medical care and emotional support for families with children with a life-shortening illness, the idea of a children's hospice was born.

Since then, thousands of families have benefited from the very special level of care available to them at Helen House, the first of over 40 children's hospice services in the UK. It is a place where the emphasis is not on the illness, it is on the child and the family.

Walking around the premises, it is easy to forget the term 'hospice'. In the art room, I am very tempted to open up a few of the boxes and put together a montage, make a model or splash some paint around. It looks fun and I want to join in. A peek into the sensory room and I am having to exercise severe levels of self-discipline not to jump in.

The music room and the games room have a similar effect. This place is about life - a good life.

Over a period of 4 and 1/2 years, Harry and his family spent many happy hours at Helen House but when it came to the final hours of his short life, Lizzie tells how she discovered a whole new level of support.

"I really thought that we had benefited from the best that Helen House had to offer," Lizzie reveals. "When Harry took a turn for the worse and we knew we were going to lose him, everyone went into a different gear. They upped the ante to astonishing levels and gave us the support, the care and the sensitivity needed at that time. Everyone instinctively knew what we wanted and gave it unconditionally."

Charity, in the case of Helen House, doesn't just begin at home - it provides one. It is a home-from-home where families are allowed to free themselves of the burden of illness and get on with enjoying their lives. And it doesn't cost them a penny.

My visit has given me a valuable insight into just how a charity can make a difference to the lives of people touched by life-shortening conditions. I don't think the difference can be measured but I do know that every family welcomed into Helen House is a lucky family.

© Jacqueline Alexander

Helen House costs over £1.5 million per year to run. It receives less that 5% of the required income from statutory funding so it's existence relies on charitable donations. Jacqueline Alexander, as part of Team Redgrave, ran the London Marathon to raise money for three children's charities including the Association of Children's Hospices. To show your support, please visit www.helenanddouglas.org.uk. Thank you.

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