Specialist medical and nursing care is a top priority within every children's hospice. But for Alison Blair, the activities co-ordinator at Scotland's only hospice, it is a joy of her job that a child's absolute right to a happy childhood is recognised and honoured equally. 'Play is valued - you don't have to fight about children's right to play,' she says.
For hospices like Rachel House in Kinross, next month's Children's Hospice Week, run by the Association of Children's Hospices (ACH), is a special chance to highlight the work that goes on within these remarkable places.
In the UK there are currently around 15,000 to 20,000 children suffering from life-limiting conditions. Families who care for them 24 hours a day, year round, may suffer huge emotional, physical, mental and financial strain. The children's healthy siblings may feel neglected, and parents find their role subsumed into the relentless caring for the sick child (or, with genetically linked conditions, sick children).
The world's first children's hospice was opened in Oxford in 1982. There are now 25 fully operational hospices, with a further five offering an at-home service, one offering daycare, and 13 currently at the building or planning stages. Most are small units catering for around eight families at a time. Many have community nursing teams. All rely on fundraising and local voluntary help to survive.
Wide ranging
Aileen Hunter is ACH campaigns co-ordinator. She says that, in essence, children's hospices provide love, care and support for the whole family, throughout the child's illness and after bereavement for as long as it is needed. 'Children's hospices are places for living and making the most of life, for children and families. Life for children who are not expected to reach adulthood, and their families, must be lived to the full. Every moment is precious, every day is a challenge, and making the most of life is a must. Children's hospices are about that.'
The care on offer includes regular breaks, music and play therapy and bereavement counselling, alongside specialist medical and emergency care.
Although hospice provision is improving all the time, families may still have to travel long distances to use the facilities.
Rachel House serves families from far beyond its central location. Users travel from the remotest corners of mainland Scotland, as well as the outer isles, to this eight-bed hospice.
Andrea Cail, head of care, recalls that before the hospice was available, families either struggled to find other respite facilities, or had to cope at home, often responding to complex nursing needs. 'One parent said, "you cannot just be mum and dad any more, because all the other stuff gets in the way".'
Rachel House accepts children aged nought to 18 at first referral, and now has on its books young adults as well as children. As well as a wide age range, there is a huge spread of ability, ranging from severely physically and mentally disabled children, to those who are physically disabled yet mentally very alert.
Andrea's team of three playworkers draws up programmes of weekly activities, flexible enough to respond to individual children's needs. In some hospices, school work is built in, but not at Rachel House. The 145 children currently supported here attend for a short time (up to 21 nights a year, with a two-week maximum stay), and the older ones want time out rather than study.
Andrea explains, 'The team looks at different activities, so for under-tens, it might be sensory stimulation, very noisy bouncy activities that siblings can join in, or going out and about to different places, like the safari park and local parks. We have entertainers coming in, plus Clown Doctors and Storytellers Unplugged.'
The hospice has messy play, dry play and soft play areas, a library and Jacuzzi plus a big garden. For siblings, Rachel House offers a chance to play with their sick brother or sister in a happy, relaxed way, and celebrate their achievements. For parents, it gives an opportunity to talk to similarly affected families.
For all of them, Andrea believes, Rachel House provides a lifeline.
'Families know that they can spend time with their child, or leave the child and go back home and do whatever they like: paint the spare room, or catch up on sleep. And after it is over, they make another booking to look forward to and plan for.'
Activities co-ordinator Alison Blair knows that sometimes it's not Rachel House's more sophisticated resources, but the simpler gestures that can brighten the lives of ill children.
She recalls, 'One terribly ill little girl had been transferred here from hospital. We had been making puppets and I brought them to her bedroom. She was too tired to make one, but she was much brighter when she saw them. Her mum said what an incredible difference it made. Her daughter had been in a cubicle on a hospital ward, and now felt part of things again.'
Wish lists
Preparation starts with a pre-visit phone call, when families get the chance to specify anything they'd like built into the programme. Requests are welcomed, but treated realistically - if a wish list incorporating bowling, cinema and safari park has to be scaled down, it will stay on file, for a future visit. But outside organisations are usually happy to help make dreams come true. One girl whose passion was theatre cried tears of happiness after she was given a trip to a production of 'The Secret Garden', including a backstage tour and meeting with actors.
Alison and her colleagues study each child's play profile, which gives an outline of their interests, their care plan and an indication of their abilities. 'We look at what's happening out and about - children's shows, the Edinburgh Festival and so on,' says Alison. 'Because it has been such a wonderful summer we have been outside in the garden every day. We take the rugs and dressing-up box out for stories and fun and games.'
But even if the weather's rotten, and a child is confined to bed, Alison's team makes sure that no one feels isolated. 'We can always bring the seaside indoors, somehow, if necessary, and create a world for a child within their bedroom.'
Children receive one-to-one attention, which is particularly important given the variety of ages and abilities. 'A lot of our children have very severe special needs, which can be daunting,' says Alison. 'The multi-sensory room is ideal because we can really find out what the child is responding to. Then we can build a programme around that.'
All the family
Those programmes must necessarily be flexible. Children dip in and out of activities between appointments for feeding, physiotherapy and medication.
Working hours are staggered to fit in with what suits the children best - so at teenage weekends, for example, there's no point starting before noon because no-one is up yet!
Entire families are welcome to join in activity sessions, and hospice volunteers are essential to help with siblings who work on more challenging art projects.
'It is great when parents come down and are involved, but we're equally aware that sometimes parents need to concentrate their energies elsewhere, or just catch up with sleep,' Alison says.
Rachel House staff are on hand too to act as advocates, helping parents to access equipment, or accompanying them to hospital meetings. They make home visits too, and offer sibling support. For children, Rachel House means having fun in a normal play environment where they can feel relaxed and able to talk about what is happening in their lives.
Of course, not all children will laugh and smile. Feedback may be limited and staff must be acutely tuned to children's reactions, even if it is restricted to perhaps a more alert look, or more muscle tone which at first only the parent can recognise.
Here there are inevitably bereavements, strong emotions and tensions.
Hospice staff are trained in coping mechanisms, and have regular appraisals, discussions and group sessions to support them.
For Alison, Rachel House is 'the most wonderful place I have ever been connected with'.
'I love the freedom and diversity to be able to work with such a range of children and be involved in every aspect of their lives,' she says. 'It is about looking at what the family needs and working from there to make sure that each child gets the most out of life.'
Further information
Children's Hospice. Week runs from September 20-27. For more details, contact ACH on 0117 9055082, www.childhospice@org.uk,or email info@childhospice.org.uk
