Caring for Joshua presented many challenges. Through the projects that we support and the initiatives we work on, we hope to help families facing similar challenges. [/callout1]We have identified three specific areas where we feel that additional support for families is really needed:
- Respite care
- Equipment not provided by the NHS
We have decided that our initial focus will be on these three areas. However, we also know that families with children with life-limiting conditions can come up agains all sorts of other difficulties. We are therefore also very happy to accept requests for contributions for one-off items or assistance for a family in need further to a referral from a medical or social work professional known to the family.
It leaves very little time or opportunity for the everyday things in life or the chance simply to have a break to restore energy reserves. This is why respite care is so important. It allows families some time to complete everyday tasks, to spend time with other children, to take a much needed break.
As a family, we found that the respite care we received invaluable.
For most children with life-limiting conditions, public transport is not an option. Some families may have cars, however these may not be adapted to the needs of the child and the equipment required by the child in order to travel. In addition, the likelihood is that at least two people will be required for the journey – one to drive and one to look after the child. All of this makes the prospect of travel extremely daunting and often, simply out of the question.
At JHHHT we want to be able to help families with these travel difficulties. Children need to attend hospital appointments; families really benefit from the respite care offered by hospices, but they need to be able to access it; children should have the opportunity to attend play centres and enjoy other activities that require them to travel, if they are well enough to do so.
Therefore, one of JHHHT’s key aims is to support projects that assist with travel and transport needs.
Equipment not provided by the NHS
Two specific examples are: car seats and pushchairs for children under 3 years old. Children with life-limiting conditions often have very low muscle tone that means that standard car seats and pushchairs are not suitable for their needs as they do not provide adequate support. However, specialist car seats and pushchairs are very expensive. We would like to set aside a fund each year to help families purchase these pieces of equipment.
Contributions for one-off items/assistance for individual families
As set out above, JHHHT will consider making contributions for one off items or for assistance for a family in need further to a referral from a medical or social work professional known to the family.