Limited addition

Children's hospice Francis House adds quality to young lives limited by illness, reports Lianne Steinberg

The building is a maze of rooms and, in the main dining area, one family sits having breakfast with their baby boy. Upstairs in the bedrooms there are a few teenage lads who are sleeping in. “They don’t like getting up until at least 2pm,” jokes David Ireland.

But this is no hotel. Reverend Ireland runs Francis House, one of the first children’s hospices in the country. With his staff – the majority volunteers – they provide care for young people with life-threatening conditions and their families.

Francis House opened in a south Manchester suburb in 1991, when there were only four other children’s hospices in the country. There are now more than 40. Francis House has young people from 23 primary care trusts on its books, but the place resembles a peaceful lodging house rather than a hospital. Nurses don’t wear uniforms; piped oxygen is hidden by walls.

“The difference between an adult and children’s hospice is massive”

“The difference between an adult and children’s hospice is massive,” says Ireland, pouring tea. “It’s a completely different thing. Most adult hospices are for cancer-related conditions but we have less than 8 per cent cancer. We have children with all sorts of conditions, neuromuscular and metabolic conditions, so we have a much longer relationship with the families.”

The end of life care that characterises hospices is only a small part of the day-to-day operations at Francis House. With rooms set aside for art and play as well as a hydrotherapy room and computer room, it’s all about respite care – helping the families of the patients.

“There may be families with two or three kids with that condition, so the parents have to go through the loss of one child and then another one. We had one family who had five siblings – four with the condition. Three of them have died with us and the fourth is in their early twenties but very poorly, so that family have had a long association with us.”

That approach is also apparent in the care of Kirsty Howard, one of the most famous young people to have stayed at Francis House. She was born with her heart back to front but has proved remarkably resilient and her continued charity work has raised money for the hospice.

Francis House rocks

“She was given the diagnosis that she would only live for another six months and that was seven years ago,” says Ireland. “The parents lived every day knowing that she could die and they carry that burden with them. She is a very poorly little girl but she continues to fight – a lot of our work is giving respite to the families, supporting them and helping them to cope.”

That can mean ensuring the young people at Francis House have a degree of freedom. “If they’re old enough to go to the pub, they’re going to the pub in a wheelchair,” says Ireland.

“One of the risk assessment incident reports recently said one young person was in the pub and tried to answer her mobile but had her fag in her hand and accidentally set fire to her hair so her carer had to pour her pint over her to put it out. You don’t get that in the NHS. But you can’t be judgemental and not let them do what their peers are doing and enjoy their lives.”

Ireland is proud of Francis House and his approachable, down to earth demeanour is shared by the rest of his staff. His office area looks like a large dining room and his paperwork is arranged in various neat piles across the length of the table. The phone constantly rings and he has his own tea trolley in the corner of the room. There’s no middle management interference as everyone gets on with their jobs to the best of their ability.

“I come in in the morning and there’s none of this business of getting a cup of tea and setting yourself up for the day. You hit the ground running.”

In the main lounge, one little boy is running around looking for toys to play with. Ireland points out that he is the sibling of a sick child.

“We give full support for the family so brothers and sisters can stay.”

“We give full support for the family so brothers and sisters can stay. There is a personal care team looking after the siblings and so the mums and dads get more of a break. A lot of brothers and sisters, depending on their age, can become carers in their own right, so they don’t have time to play out and relax. Or often the sick child has all the parents’ attention and the other child feels a bit neglected.”

There are groups and activity days for siblings, allowing them to meet others in similar situations, as well as question and answer sessions with doctors – parents can be so tired or stressed that it is hard to talk freely. “For older kids there’s FIZZ, which offers emotional support and one to one and we do another support group for sick kids in their late teens, early twenties who, because they’ve been told they’re going to die, begin to grieve for the loss of their own life – a pre-bereavement grieving.”

Ireland shies away from the term “counselling” though. “We do listening and support because counselling implies that you’re going to make things better and you can’t always do that in the hospice.

“The hospice isn’t about dying – it’s about children with a short life expectancy and giving them the best quality and best possible life.

“The sick kids go on Outward Bound adventures like abseiling and canoeing. What they want to do is what their peers are doing but they’re not often able to do so and we help them in that case.”

There are only a few telling reminders that this is a place for end of life care. In the chapel there are huge photo albums, known as memory books, which contain pictures of all the children who have died, with messages from the family. It’s not unusual for Ireland to have done the baptism and funeral service for the child. There’s also the rainbow suites, which act as a mortuary of sorts.

“The child is brought in here when they die and it is decorated as if it’s their bedroom. We can put up Man United or Disney stuff – whatever they like – and the family can have this as their private space. We look after the child, dress them, wash them.

“It’s better than when the child died in hospital and they were put into a side ward for three hours before being moved into a public mortuary – it’s just not the right place for the child. We can help with the funeral arrangements and look after the kids. It’s a space where family can gather in private.”

Young people have to be under 16 and diagnosed with a life-limiting condition when referred to Francis House. “Unlike other hospices we don’t have a top age and there are two ways you leave us – you either die or you decide you don’t want to come here anymore,” says Ireland. “We would never turn people away because there are no adult services to pick up where we leave off.

“Adult hospices are about older people dying and that’s not what they need. If people are from a good middle class background they often have access to wheelchairs and services but if you’re from a broken-up background, just getting a wheelchair is a battle.

“We have one young man whose wheelchair has a broken wheel. Just to get him a decent chair would help him so much but he’s got no support to access the mobility grant. It’s about supporting the whole family and making their life as good as possible.”

Although Francis House was founded by a nun, Sister Aloysius, and Ireland is a minister at a church in Oldham, the hospice is open to all denominations. Ireland is keen to point out that they never dictate the manner in which a child should be looked after.

“We care for the families and the children as the families want the care to be – it’s parent or young person-led and at the beginning of every visit, they can talk about how they want the care to be. We’re very non-judgmental here.”

He smiles as he points out a religious painting on the back wall of the room. “I inherited that and she’ll haunt me if I take it down.”

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