Money brings hope for hospice families

Barry Nelson talks to parents and staff about life inside the Butterwick Children's Hospice.

IT'S always bugged Tracy Sowerby that half the beds at the Butterwick Children's Hospice have remained closed since it opened five years ago. Tracy, who has a severely disabled 11-year-old called Matthew, was the very first parent to walk the through the door when the region's much-needed first hospice for children opened in Stockton.

Since that time, Matthew has been one of the regulars at the hospice.

But what has baffled her is that two out of the four beds have remained empty all this time due to lack of funding. And this means that respite care for families who have multi-disabled children is strictly rationed.

So far, Matthew has been allocated a fortnight every year, with the occasional extra day if there is a cancellation.

This week a successful £1.2m bid from Butterwick to the New Opportunities Fund means that all four beds will be opened, along with a greatly expanded hospice service for adults in rural areas.

Astonishingly, this is the first time the children's side of the Butterwick hospice has received any external funding. While the two adult hospices run by the Butterwick organisation are partly funded by the NHS, the children's side has had to rely on donations.

"This place is absolutely brilliant but they have never been able to help all the families that are out there," says Tracy, who lives in Hartlepool. "You hear of lottery money being used to support opera and things like that. They have got their priorities all wrong."

Matthew was born with a congenital heart defect, compounded by the after-effects of a severe epilepsy attack he suffered at 15 months which left him blind and with cerebral palsy.

Tracy, who originally wanted to work with disabled children and has fostered other disabled children, makes light of the 24-hour-a-day care she has to give her much-loved son. She is helped by her tough-minded sense of humour. "He's fully dependent and has had open-heart surgery twice. Other than that he's fit as a lop," she says.

After struggling to get the right NHS support for Matthew, she says the Butterwick opening was "a life-saver", giving her the chance to have more independence for a fortnight every year. "Before this place opened, my life was focused on Matthew 24 hours a day, seven days a week," she says.

A social services respite home run by Hartlepool Borough Council has proved to be another invaluable prop, allowing Matthew to be cared for overnight a few times a week.

Tracy is relieved that one of the four beds will be reserved for emergency cases. "I was taken into hospital a while ago and I was in a bit of a panic. There was no-one to look after Matthew and all the beds were full at the hospice," she says. Relatives helped her out, but that is not an option open to all.

So what is it about the Butterwick hospice that commands the love and loyalty of parents. "It is so relaxing here and so well-equipped," says Tracy. "Matthew is always very happy here, he knows he is looked after. I really don't need to give a thought. He loves the hydrotherapy pool and the sensory stimulation room, which is filled with different-coloured lights."

To strangers it might be difficult to understand how Matthew communicates with his mum, but Tracy says it is almost second nature.

"I know what he wants from the different sounds and movements that he makes. He is really happy and contented but he has got to be kept entertained all the time or he just goes to sleep," she says.

Certainly, when a passing nurse activates the musical soft toy on Matthew's wheelchair, the little boy produces a faint but distinct smile.

Nursery nurse Tracy Bullock is also looking forward to seeing more children coming through the door's of the Butterwick hospice.

"It is brilliant that the hospice has got all this extra money. It means we won't be turning parents away," says Tracy, who has worked at the Stockton site for nearly two years. "If a parent phones and says their child is not well we will be able to offer care."

The nurse breaks off during the interview to go back to Alex from Darlington, a severely-disabled little boy who needs help with his breathing. Holding a suction device in place to clear Alex's airways, Tracy insists that working at the hospice is "absolutely brilliant".

People always ask how she handles the sometimes stressful nature of the work but Tracy turns such sentiment on its head. "You always get asked how do you do it, isn't it depressing... it's not!" she declares.

While it is sometimes hard to communicate with some children, in time it becomes second nature. "If you spend time with children, you just know what they want," she says.

Tracy and her colleagues deal with a wide age range, from nine-month-old babies to older teenagers. "Some of them are typical teenagers, they give you a hard time and they are always trying to see what they can get away with," she laughs.

Older children are often taken out on organised outings and use the hospice computers to look up local attractions. "They decide what they want do and we take them, whether it's shopping or bowling."

While the money will be useful to cover the costs of running extra beds and beefing up the adult side of the Butterwick's activities, fund-raising remains vital to the future of the hospice group.

Graham Leggatt-Chidgey, Butterwick chief executive, is keen to stress that supporters need to raise at least £100,000 every month to keep the hospices open.

Apart from the bread-and-butter donations, the children's hospice is also keen to attract people to support "the wishlist", a catalogue of goodies which the children who use the hospice can enjoy. The up-to-date list includes high-tech items such as DVDs, videos and computer games and Boccia Ball, a version of boules for children who have limited mobility, but old favourites such as Monopoly and Airfix models remain popular.

"We would love some more single duvet covers which would be suitable for teenagers," says Tracy.

As Tracy looks after Alex, another nurse fusses around Matthew, producing a faint but distinct smile on his face.

Thanks to the lottery funds, his mother hopes that they will both be seeing more of the Butterwick. "Hopefully, we will get a few more days now," says Tracy, stroking her son's hand.