News & stories News Myth busting There are misconceptions of children's hospices and the specialist and unique care that they provide to families when there is nowhere left to turn. We talk about the myths surrounding the specialist care given to families by children's hospices as most people assume that this type of care is an extension of the NHS, but the reality is very different. We want to highlight the vital care and support that these services provide to seriously ill children and their families. There are misconceptions of children's hospices and the specialist and unique care that they provide to families when there is nowhere left to turn.Some things which may surprise you about children's hospices: Palliative care is not just for end-of-life Children’s hospices and palliative care services offer a vast range of support from the moment a child is diagnosed with a life-limiting or life-threatening condition. Whilst end of life care is a key element, additional support includes: short breaks, counselling, music and play therapy, sibling support groups, craft and activity sessions and bereavement support. Children’s hospices support the entire family Hospice care supports the entire family, often over many years and at any stage of a child’s illness, providing child-centred, family-focused care. Healthy siblings are encouraged to take part in activities, days out and support groups, while a short break at a hospice gives families the opportunity to relax, play and spend time together. Children with life-limiting or life-threatening conditions often have complex medical needs, which require round the clock care, putting enormous physical and emotional pressure on parents, carers and siblings. Hospices are there to offer a vital lifeline to families, often providing the sole respite for exhausted and stressed parents. Sometimes this is the ‘difference that makes the difference’ in allowing families to cope. Knowing that their child is being expertly cared for, in a safe and comforting environment, may well be the only time that parents and carers are able to get uninterrupted sleep and recharge their batteries. It may be the only time that they can take their other children for a pizza or attend a dental appointment. As one of the Haven House mums told me, it is the only opportunity that she has to dry her hair – something that most of us take for granted, but which are unthinkable if you have an un-well child, requiring 24-hour care. Children’s hospices are not part of the NHS and receive limited Government funding In fact they are registered, independent charities, relying mainly on voluntary contributions and community fundraising. Haven House, for example, receives only a fraction of its funding from Government sources, the rest comes from local community fundraising and charitable trusts. The cost of running the hospice is £3,835 per day, so its fundraisers have to work very hard, just to keep the hospice open and operational. Children’s hospices are different to hospitals Haven House looks very different to a hospital and is much closer in feel to a play-centre or nursery. ‘Upstairs’, in the bedrooms, the hospice aims to be a home-from-home, but with the full medical resource and specialist staffing that one would expect from a hospital setting. There are no wards and children sleep in their own personalised bedroom, under a duvet pronouncing their favourite football team or cartoon character and wearing their own pyjamas, just as they would do at home. Most of our children still go to school The aim of the hospice is to ensure that life continues as ‘normally’ as it can for the child, parents and siblings. Children, whether well or unwell, thrive with a rhythm and routine to the day and school provides that. Contrary to what many people may think, the majority of our school-aged children will continue to attend most days and a bus comes to collect those who are ‘well’ enough most mornings. For those children who aren’t, or for those who are particularly susceptible to infection at any given time, the hospice will provide a day of educational activities.