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A Safe haven at Helen’s house
The Edinburgh Sick Kids Friends Foundation Drop-In Centre, which is unique in the UK, is "a home from home."
The kitchen-diner at 21 Millerfield Place, Edinburgh, has a squashy sofa, the sort you would have trouble getting out of if you settled in with a cup of tea and a paper. It's quite different from the hard-backed, easy-clean furniture you would expect to find in a hospital waiting area.
But that's the whole idea. Relaxation is the byword here, because this is where parents and children stuck for days or weeks on end in the nearby Edinburgh Sick Kids' Hospital can come to get away from it all. The Edinburgh Sick Kids Friends Foundation Drop-In Centre, which is unique in the UK, is "a home from home", says centre manager Helen Taylor. She wants people to see it as their "safe space".
Settled into the squashy furniture today are Alison and John Pentony. They know the best seats, having spent many, many hours here since it opened exactly three years ago.
Their daughter Anna, six, who is in the playroom, has spina bifida and has been coming to the Sick Kids since birth. "We might come to the hospital three to five times a month," says Alison. "If she's sick, it could be more.
"Once, we came in for a day and didn't go home for six months."
Anna was three at the time, in March 2006. Her doctors found fluid trapped on her brain stem and had to do an emergency operation to relieve it. John says: "They told us there was a possibility she wouldn't survive the night."
Anna came through the operation but had to spend most of the spring and summer of 2006 in hospital. Alison and John hardly ever left her side, for four months taking it in turns to spend the night on a mattress by her bedside until Anna's consultant advised them to stop sleeping over.
That May, Alison and John started to notice signs going up about the hospital advertising a new facility where children and their families could chat, relax and escape. "We kept saying we wish it would hurry up and open," says Alison.
When it did, Alison, John and Anna were among the first in line and Anna was the first to use the centre's wheelchair lift.
What did they feel entering the drop-in centre for the first time? "Relief," says Alison. "The wards aren't very pleasant. They are depressing and noisy."
By contrast, the drop-in centre has a homely, non-clinical atmosphere, although parents have the reassurance of knowing the staff are trained nurses and the hospital is close at hand.
"It's three years down the line now and we've become part of the family," says Alison. "We joke to Helen that we'll need to start paying gas and electricity.
"We talk to the other parents, have a cup of tea, Anna has a ball. We would be lost without it now."
The Pentonys are now thankfully no longer resident at Edinburgh Sick Kids. These days, Anna has a nursing package at home. Because her breathing can stop when she falls asleep, she must be put on a ventilator every evening and a nurse sits with her through the night. She must still regularly visit the hospital, but enjoys the opportunity to go to "Helen's house" while she's there.
Alison and John, who also have an eight-month-old, Calum, stress how important it is for parents. "The nurses in the hospital are there for the children, but the adults go through a tremendous amount of trauma," says John.
Taylor, who is a nurse but does not wear a uniform, says: "We're here to look after the extended family."
No medical staff come into the centre and the hospital isn't even visible from the centre. Inside, the playroom is stuffed with every type of amusement - the Wii, computers, jigsaws, musical toys, arts and craft materials galore, books and a TV with DVD player. Anna, who's been playing, wheels herself through after half an hour to see what's happening. She loves the place, she says. "I do lots of things - painting, drawing and collecting stuff. I've been making a clay pot and I'm putting stickers on it." She agrees with her mum that it "feels like home".
Hannah Gray, 17, has been coming since she was 10 and loves being able to phone and email her friends or have them meet her at the centre. "I was always stuck on the ward - the nurses were lovely but they didn't have time to talk to me. Although I was surrounded by people, I was lonely.
"All that changed after the drop-in centre opened."
The centre comprises two complementary therapy suites for the adults, for massages and reflexology. Counselling is also available for those who want it and everything is free of charge.
Both Alison and John are amazed that no other hospitals in Scotland have such a refuge.
John says: "I think Glasgow should think about it. It's somewhere for parents to go at a very stressful time in their lives when they're not in control." Taylor says she would like it to become a benchmark for other hospitals.
NHS Glasgow has confirmed that following consultation with children, young people and parents, the new Yorkhill hospital will have a relatives' area and a discharge lounge with some similarities to the drop-in centre, though not situated away from the hospital. It said in a statement that a family panel of children and their families requested the relatives' area "near to the ward areas where parents and carers can make a cup of tea/coffee, have a seat and get a wash".
The new Yorkhill will also have a "medicinema" where patients can go to, even while in their beds, and a discharge lounge for patients and their parents which will have a play area, electronic games and other activities.
It added: "There is also an adolescent area for older children and young people where there will be games and an area to make a drink."
When the new Edinburgh Sick Kids Hospital opens in Little France in 2012, the drop-in centre will relocate there too. Taylor has requested that it should once more be sited away from the main hospital buildings and have an outside space. "It's going to be bigger and will definitely have the facilities we currently have and hopefully more," says Taylor. Around 400 people use the drop-in centre every month, double the numbers when it first opened.
The centre costs £150,000 a year to run, funded by the Sick Kids Friends Foundation with support from donors and parents.
But Alison and John rely on it, as do dozens of other families. "You can come in here and say, 'You'll never guess what the doctors want her to do now' and they'll just put the kettle on and listen," says Alison. "You need that support."
A homely environment for families
The Sick Kids Friends Foundation Drop-in Centre helps a range of children with life-limiting or long-term illnesses such as leukaemia, cancer, cystic fibrosis, cerebral palsy, epilepsy, spinal problems, neurological and respiratory conditions. Often families of children who must frequently attend hospital, and stay for long periods, experience elevated stress levels and feel the need to talk to others in a similar situation. A survey of children and families before the centre opened found:
- 87% wanted advice
- 83% wanted access to information
- 70% sought emotional support
- 64% were looking for benefits advice
- 53% wanted to meet others in the same situation
The centre aims to provide for all these needs in a relaxed, homely environment.
