The charity wants parties to pledge that they will:
- protect vital financial support for children with cancer and their families through Disability Living Allowance (DLA)
- improve access to Personal Independence Payments for young people with cancer
- and end the postcode lottery that exists in supporting children with cancer to keep up with their education during and after treatment.
Lorraine Clifton, Chief Executive of CLIC Sargent, said: “Protecting vital financial support so families are not forced into debt while their child is being treated for cancer, and working with schools and local authorities to ensure every child and young person with cancer gets the help they need to keep up with their education are urgent issues where the next Government could make a big difference to families who are dealing with one of the most difficult challenges they will ever face.”
The charity has been critical about the delays and poor treatment young people with cancer over 16 years-old have faced since DLA was replaced by the Personal Independence Payment (PIP) last year. It fears that plans to review DLA for children under 16, likely after the next election, could see families with younger children with cancer facing the same struggle.
CLIC Sargent has written to officials working on manifestos at the Conservative, Labour and Liberal Democrat parties to consider evidence the charity has gathered in the past two years on the impact of cancer on families’ finances and on children’s education and social development.
CLIC Sargent research found that without financial support through the benefits system, families of children with cancer would find it even more difficult to cope financially during their child’s treatment. Parents surveyed for CLIC Sargent’s Counting the costs of cancer report told us:
- on average, parents spent £367 on extra expenses every month as a result of cancer treatment, amounting to an annual spend of £4,000
- two in three parents built up debt to make ends meet
- one in three parents took unpaid leave for three months or longer when their child was diagnosed.
And a series of CLIC Sargent reports from 2012 and 2013 highlighted a lack of consistent support for children and young people with cancer to keep up with their education. In many areas of the UK:
- the education that children and young people with cancer receive in hospital schools and at home could better meet their needs
- there is not enough communication between a child or young person with cancer, their family and their school
- there is not enough tailored support when a child or young person first returns to school following a period of illness to help them re-integrate effectively and achieve their potential.
As well as the two urgent pledges, the charity also set out five longer term aims for the next UK Government to act on to ensure that children and young people with cancer get better support during and after their treatment.