Today marks the start of Children's Hospice Week - seven days of awareness raising, highlighting the vital care and support that these services provide to seriously ill children and their families.
Awareness of what a children's hospice is or the services that it provides is pretty low. Sam Allen, Communications Manager for the charity, Together for Short Lives, explains 'People often have a picture of children's hospices as dark and depressing places, yet if you walked into any of our buildings, you would find that they are bright, colourful, happy and focused on life - however short it may be.' She continues; 'Families frequently tell us that they thought that hospice care was only about end of life and that they wish they had accessed their local service much earlier.'
My own experience of children's palliative care has come about through an involvement with Haven House in Woodford Green, Essex - a local hospice which looks after 150 local children and families, every year.
Prior to visiting the charity, I assumed that this type of care was an extension of the NHS; a place where children went, when their local hospital could do no more for them. A clinical environment, with children confined to wards and beds as they awaited the end of life.
The reality of what actually happens is startlingly different. The first thing I realised was that children do not go to Haven House to die. They go there to live and to make the very most of whatever time they have in their short lives.
These children are unlikely to reach adulthood, but the nurses and staff are there to ensure that life is the best that it can be for them and their family; making things as 'normal' as they can be, under an unimaginably difficult and highly unusual set of circumstances.
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 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 and apply make up - something we should be able to take for granted, but which is 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 do not have 'hospital' wards
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 clinical setting. There are no wards and children sleep in their own personalised bedroom, under a duvet championing their favourite football team or cartoon character and wearing their own pyjamas, just as they would do at home.
Children still go to school
The aim of the hospice is to ensure that life continues as 'normally' as it can for the child, the 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.
For more information about Children's Hospice Week, please visit www.togetherforshortlives.org.uk
For more information about Haven House or to donate www.havenhouse.org.uk