Campaigns

No parent wants their child or teenager to go into hospital – whether it is for a serious illness or a minor injury. Children and young people themselves can find going into hospital a daunting experience. Although every effort is made to keep time spent in hospital to a minimum there are still a high number of children and young people with complex health needs who find themselves there for an extended length of time – weeks, months and in some cases years.

Many of these children and young people are dependent on technological support including ventilation, and as increasing numbers of children survive premature birth, critical illness and accidents, the number needing this type of care will increase. Unfortunately the lack of adequate funding for community nursing services means that many are being cared for in high dependency or paediatric intensive care units. However it has been shown that with the right support in place the best place for children and young people to be cared for is in their home.

To highlight this issue WellChild is delighted to be working with the Royal College of Nursing (RCN) and together they have launched the Better at Home campaign. The campaign calls for improved care for children and young people with long term complex care needs, and their families, through greater investment in community children’s nurses. It will also highlight the current disparity in the health and social care services available to these families as well as identifying good models of care to show what can be done, including the work of the WellChild Nurses.

For the past three years, WellChild has funded a small number of children’s nurses in Birmingham, Edinburgh, Bristol, London, Oxford, Liverpool and most recently Cambridge. One of the main priorities of the nurses is to bridge the gap between hospital and home so that children are discharged as soon as possible. They work to get children the care they require at home with their families which frees up valuable hospital beds for other more critically ill children.

“Alder Hey Children’s Hospital believes that all children and young people should have access to a life that fulfills their potential. We know that some of our children who require intensive care packages have had to stay in hospital for months if not years mainly due to issues such as funding and housing. WellChild has helped us to change that position for a number of our children by funding a dedicated nurse for long term ventilation, the difference this has made to our families has been fantastic, but this campaign needs to ensure this happens for all children in this position”

Moya Sutton, Executive Nurse, Alder Hey

For the first time the campaign will also try to map the actual number of children and young people throughout the UK who remain in hospital long term, rather than receive care at home, because of a lack of specialist children’s nurses

The Better at Home Campaign has now received parliamentary support through an Early Day Motion, lodged on 31 March 2008 by Tom Clark MP and we will be asking for backing from all MP’s as well as families and health professionals, to support the campaign. Plans are also underway to extend the campaign into Scotland, Wales and Northern Ireland

It is the experience of families that is the most important part of this campaign so we would love to hear from any parent or carer wishing to share their story. For more information about the campaign and how you might get involved, please call 0808 801 0330 and speak in confidence to one of the nurses working on our children's health helpline. Alternatively email campaign@wellchild.org.uk