The Rainbow Trust - helping children with serious illness

9.07.00am GMT Mon 22nd Mar 2010

Rainbow Trust Children's Charity provides emotional and practical support for families who have a child with a life threatening or terminal illness. Rainbow Trust is asking Parliamentary candidates to make a commitment to help those families.

Rainbow Trust's Family Support Workers provide the whole family with individually tailored, high quality support for as long as they need it. They are contactable 24 hours a day for families in crisis from diagnosis, through treatment and even after bereavement.

With the growing public awareness of the problems faced by disabled children and young people and especially those requiring palliative care, the political parties are increasingly being challenged to meet the needs of this group.

Rainbow Trust services improve the lives of disadvantaged families, tackling isolation, improving school attendance, creating social opportunities and ensuring every child or young person has the best possible support during the progress of their illness.

Due to funding restrictions their work only touches a small number of those whom they could potentially help. Last year they worked with 1,000 children and young people across England. The Department of Health estimates that in the average Parliamentary constituency there could be as many as 175 children or young people who could benefit.

The Government funded "Aiming High for Disabled Children" scheme has made a considerable difference, giving the family a valuable short break to enjoy life as other children or teenagers would. The present Government funding package to PCTs and Local Authorities is due to expire next year, and we are urgently seeking clarification as to how this vital area of work will be funded beyond this date.

..............................

They've asked the following questions.

"If elected will you ensure that the needs and views of disabled children and young people and their families or carers are at the top of the Parliamentary agenda?

If elected will you speak up for disabled children and young people and their families or carers in your constituency?

If elected will you support the specific needs of families with a child or young person with a terminal or life threatening illness?

Do you support the right of families to determine the place of death of their child or young person with a life limiting or life threatening illness?

After the election will you help press for improved and sustainable funding for voluntary sector organisations, such as Rainbow Trust and the children's hospices, from the Government, NHS and Local Authorities?

Do you support the continuation of Aiming High for Disabled Children funding for short breaks after the ending of the present Government funding after 2011?

If yes, will you lobby your party leadership after the election for the continuation of this vital funding?"

.........

I have of course answered 'yes' to all the questions.