The cost of childhood cancer can be devastating for families
We need to better support young people and their families facing a cancer diagnosis, writes Thangam Debbonaire MP.
When a child is diagnosed with cancer, the first priority is the health and wellbeing of the child. We rightly expect the NHS to take care of the cost of treatment and at the point of delivery, they do.
However, cancer in children and young people often also has a devastating economic cost for families. When a child or young person is being treated for cancer, parents spend an additional £600 a month on average, according to a 2016 study by CLIC Sargent, updated in 2017. Often, one parent will have to give up work to care for the child, resulting in a loss of income. There are additional costs of heating a home, or other changes to daily life which result from the needs of a very sick child.
Cancer is thankfully rare among children and young people. But the low number of cases means families often travel long distances for treatment, resulting in extra travel and accommodation costs and sometimes additional costs for care of other children in the family whilst the parents are with the sick child. On average, families in this situation travel 440 miles a month for treatment, with 8% of families travelling over 1,000 miles a month.
Young adults at the start of their working lives may also be expected to cover the additional costs of their own cancer treatment but on low starter salaries, or as a result of losing their job or having to leave study to have treatment, they too face additional costs which are difficult for them to manage.
So how could we better support these young people and their families?
This was one of the questions behind an enquiry I led as chair of the All-Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer, published in the report ‘Listen Up! What matters to young cancer patients’.
During the enquiry, which we carried out with the Teenage Cancer Trust and CLIC Sargent, families told us that treatment can prevent both patients and their parents from working or attending education, further increasing costs.
During the enquiry, Dr Rachael Hough commented that additional costs “put a huge strain on the family and I think it puts huge strain on the patient as well, because they know their illness is causing such difficulty in their family and they feel quite guilty.”
Last year, I spoke in Parliament in favour of a new travel fund to help families struggling with the burden of childhood cancer. Guaranteed free car parking at hospitals for young patients and their carers would also help.
Our report also recommended that young people and parents should have Disability Living Allowance or Personal Independence Payments they are entitled to, backdated to the date of diagnosis. There is a government Healthcare Travel Costs Scheme but for various reasons, families with a child with cancer are often ineligible for the costs we identified.
Such changes would not cost a lot nationally, as the overall numbers are small. But for those families in need, it would make an enormous difference. CLIC Sargent estimates that just £5 million per year could make a huge difference and I support their campaign for a Young Cancer Patient Travel Fund.
According to one parent of a child with cancer, “It was fine for us because I had a good paying job and a car. But you see other families that don’t have that and it’s a struggle and worry. We got into debt, but we can afford to get into debt, but other people can’t – the added cost, is not something people take into consideration.”
Families facing a cancer diagnosis have enough to deal with. We should make sure they get the help and support they need.
Thangam Debbonaire is Labour MP for Bristol West.
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