Building happy memories – Julia’s House
Julia’s House offers life-changing support to very ill children and their families but, like all hospices, it suffers from some public misunderstanding of what it really does. Andrew Headley sets the record straight.
Published in June ’14
‘When we were drowning, the only name on the life raft read “Julia’s House”.’ That quote from a parent graphically illustrates the vital part that the charity plays in the lives of the families of the hundred or so children for which it cares. The children range from new-born to eighteen and live all over Dorset, plus some in South Wiltshire. There is a common but mistaken impression that hospices are places where people go to die, but that is only part of their function and Julia’s House is primarily just the opposite – it is a place where desperately afflicted children go to live to the full the sometimes limited time left to them.
The Julia Perks Foundation was founded following the death in 1997 of Julia Perks, a paediatric nurse who, herself suffering from cancer, realised how much seriously ill children and their families needed specialist care. Six years later, the first two nurses started visiting such children in their homes, and home care remains central to the charity’s activities through its Community Care Team. It was always the intention to acquire a property, though, and in 2004 the Valentine Trust, a grant-making body which favours projects in Dorset, bought a handsome house in Springdale Road, almost exactly where Broadstone and Corfe Mullen meet, and leased it to the charity for a peppercorn rent. On its opening in 2006, the house and the charity were both re-named Julia’s House.
Children are referred to Julia’s House by GPs, community nurses, hospitals or the families themselves. Each child is assessed by his or her own doctors and by the charity’s own nurses, and only those with life-limiting or life-threatening conditions are accepted. The child may receive care, which the parents usually book in advance, either at Julia’s House or in his or her own home. The charity liaises closely with GPs and agencies involved in each case, and the care is given by fully qualified paediatric nurses and proficient carers, so parents can be sure that even though many of the conditions are rare and unpredictable, the medical attention will be as good as it can be.
To provide the necessary flexibility, some of the staff are part-time, but all are trained to the same high standard. The monthly rota is compiled by the hospice lead nurse, Louise McKenna, who compares it to doing a killer sudoku! Each child’s parents are entitled to 200 hours of free standard respite care a year, which they might use to spend quality time with the rest of the family, to give themselves a treat or simply to do necessary chores like shopping. In practice, almost every family helped by Julia’s House has had a crisis such as parental illness at some time, and has received emergency care which is in addition to their allocation.
Entering Julia’s House, one is immediately struck by the bright and colourful decoration. As Louise McKenna puts it, ‘We want them to know they’re coming somewhere special.’ The four bedrooms in which children can stay at weekends or during emergencies are equally attractive, designed to look not at all like hospital rooms despite being fully equipped. There are glimpses from the upper windows of Poole Harbour with the Purbeck Hills beyond, and there is a sensory garden which manages to look neat and attractive despite doubling as a play-space for the children, thanks to a loyal team of volunteers.
‘It’s like a fab nursery for the little ones and like a youth club for the older ones,’ is the view of Zoe Monk. The younger children, who include Zoe’s son, Samuel, are basically there to play, but each has a creative play plan designed to develop his or her abilities as far as possible. They may do crafts or bake or play music, or perhaps spend time in the sensory room with its range of lights, sounds, shapes and textures, each of which has a therapeutic or developmental purpose. Older children are often at a special or mainstream school, so come to the hospice mainly at weekends and in the holidays; an important part of the charity’s work is to liaise with parents in preparing for the transition to adult care at the age of eighteen.
Virtually all the children, though, regularly receive care at home, which may be given by nurses or carers or a combination, depending on individual clinical need. As Julia’s House covers the whole county, ‘Housemates’ sessions have also been started in village halls and other venues where parents can meet informally and make friends while their children are cared for.
Perhaps the most fundamental tenet of Julia House’s approach is that they are there to provide ongoing care not just for the child but for the whole family. Parents are helped to adjust to the pressures of dealing with a very sick child and siblings, who are also affected by their family’s situation, are not forgotten: events are arranged for them, including residential weekends away, and in special cases more individual support is given. As Amanda Sheppard, whose daughter, Leanne, has an array of complex conditions, says, ‘Julia’s House has been a complete lifeline for me and my elder daughter. I have other respite care in place, but if I’ve got a problem, Julia’s House is the first place I will phone.’ In another parent’s words, ‘It wraps its arms round the whole family.’
Zoe Monk says, ‘I wanted somewhere where Samuel would be looked after by people who knew what they were doing, but also somewhere I could belong’, and the Julia’s House families become part of a wider family or fellowship. It is a comfort to be able to talk to other people in similar circumstances about practical aspects, but also about deeper issues. ‘You can only talk about things like your child’s limited life-span with people or staff going through the same thing,’ says Zoe. ‘In the outside world people might find such a subject alien or embarrassing, but here it’s normal, which is a comfort and a relief.’ Close friendships, as between Zoe and Amanda, are frequently forged between parents.
As a hospice, Julia’s House does provide for end of life care: a suite of rooms with a sofa bed and basic facilities so that parents can stay, siblings can visit and the experience is as close as possible to dying at home. The rooms have their own little garden which is enclosed but which can be opened up to the larger garden, so families can be isolated or involved in the wider activity of the hospice, as they like. It has been known for children in whose life Julia’s House has played a large part to be brought here so that parents can say their goodbyes in familiar, homely surroundings rather than an impersonal hospital mortuary or funeral parlour.
Sometimes the dying child has been known to the staff for several years and, to a degree, they share the parents’ grief on a personal level, while having to maintain a degree of professional distance in order to be strong yet empathetic for the family. Work is done both internally and with outside agencies to build up resilience in the staff so that they can get the balance right when faced with the saddest of situations.
Even the most loving care comes at a price, although users of the service are never charged. It will cost almost £4 million to run Julia’s House this year, of which only about £300,000 will come from the NHS or other government sources. The rest has to be raised in the community through an energetic fund-raising programme including events, a lottery, personal challenges like skydiving and marathons, legacies, and contributions from grant-giving bodies. Eleven shops throughout the county make a significant contribution, too. The majority of the 400 volunteers, without whom the hospice could not operate, are involved in fund-raising. It’s a tough challenge – but not as tough as the challenges facing Julia’s House families every day.
The abiding impression of Julia’s House is of an intensely positive place; although there is an acceptance of future sadness, it is about enjoyment. One parent summed up its purpose exactly: ‘You are helping us to build happy memories and to cope with what is to come.’ ◗