Rev Richard Seed launched an appeal in 1984 to build the first children’s hospice in the north of England. Now Leeds’ Martin House Hospice, 30 years after it opened its doors for the first time, is celebrating its anniversary year.
And while a lot has changed in that time, its principles have remained the same. To offer care and support to the young people here who have life-limiting conditions and to their families, and to make their remaining days as fulfilled as possible.
“This is not a hospital, filled with dying children and sad families,” said Michael Tatterson, nurse consultant. “It’s about living, and making the most of that short life.
“We know that the children have got life-limiting conditions, but everybody here has got that, it’s not the focus for them. It’s about helping children live better.”
Martin House, in Boston Spa, is a hospice for children and young people. They work with some families from before a baby is born, and with others until they reach the age of 30.
Yes, they do provide end-of-life care. The children they work with have life-limiting conditions, meaning they will, inevitably, die younger. But they are living longer and fuller lives, with advances in medical technologies and know-how.
And Martin House, the first of its kind to build a teenage and young person lodge, is dedicated to providing a package. There are doctor and nursing teams, but there are also psychologists, therapists and outreach teams. It isn’t just about end-of-life care, but now mainly about respite care, palliative care and community care, as well as bereavement care.
One unique aspect is Whitby Lodge, built in 2002 for teenagers and young adults, offering them a degree of independence - and freedom from the rules.
“They are all up together at 4am, playing computer games and hanging out,” said Mr Tatterson. “There’s a kitchen they can access, although I don’t think there’s a single day they’ve cooked their own food!
“We have seen some very open and frank conversations around that dining room table. Yes, sometimes we do talk about dying. We can take some of that fear away.
“We had one young person who was frightened because he ‘didn’t know how to do it’. He didn’t know how to die, and it really worried him. We reassured him it didn’t matter.
“What he wanted, was a bit of control - so we can talk about pain relief. They often don’t have much control - they can’t go to bed at 4am at home, but they can here. Here, they can have that choice.”
There is a multi-faith room, and support groups for families. There are the extensive gardens, sensory suite, music and art rooms, and even a den for the teenagers to take over.
And there is a small army of volunteers, many of whom have lost a loved one themselves or experienced the care at Martin House.
There are the cooks, most notably Robin Wraith who has been with the hospice since it all began in 1987, renowned for his cakes and now a “fixture” of the kitchens.
And Mr Tatterson himself, who first came to the hospice on work experience as a 16-year-old and who was so inspired that he trained to be a nurse. Nineteen years later, at the age of 35, he cannot imagine doing anything else.
“Martin House is a safe place for families,” he said. “I do think the staff love the children and young people they look after here. It’s a funny word, but I do think that’s what it is.
“The conditions the kids have here are harrowing conditions. We know that child is going to die. But here, we enable children to be children, and young people to be young people.
“We make people feel special. And normal - that’s what is really important.”
400 children and 150 bereaved families from East, West and North Yorkshire supported each year
1,998 - children accepted by 2016
3,286 nights of care in 2016
530 hours of psychological care for children and families
1,763 hours of care at home and other settings
5,000 square miles covered by Martin House Hospice
150 staff, 250 volunteers
£6m to run every year
£4m raised through donations and fundraising
£10 donation could pay for ingredients for a child to have fun baking cakes
£100 could pay for a member of the community team to offer support in a family’s home