CLIC Sargent has today (1 September) released new research, to coincide with the start of Childhood Cancer Awareness Month, that reveals that on average, parents are spending an extra £600 a month on living expenses when their child is in cancer treatment, putting a strain on family finances and forcing many into debt.
The Wingroves, who received financial support from CLIC Sargent after struggling with extra costs themselves, are encouraging people to join the charity’s Cancer Costs campaign and sign its petition to Prime Minister Theresa May, urging her to take action now to help ease these financial problems.
Daisy was diagnosed with Ewings Sarcoma, a primary bone cancer that affects mainly children and adolescents in November 2014. She endured operations to remove the cancerous bone and reconstructive work on her legs, as well as two intensive bouts of chemotherapy.
Post-operative infections like MRSA have been challenging, and her wounds did not heal properly. This meant that Daisy had to use a wheelchair to get around. In January 2016 a metal plate poked through her skin, so the metal work in her legs was removed for good. She is now 10-years-old, in remission and in rehab, and the hope is that her mobility will improve in the future.
“Having a child in hospital with cancer diagnosis is incredibly stressful, add to that the burden of the extra expense it can be a very worrying time for everyone.
“Lots of people rely on relatives or benefits and some a combination of both. Very few find their work is accommodating or helpful, never mind manage to continue to work.
“The costs mount up in many ways, travel costs is a big one added to which parking. Sometimes up to £10 a day when we were in London for treatment.
“Add in an 80-mile round trip to the hospital every week, sometimes more, and you are looking at quite a cost.
Jane echoes the findings of CLIC Sargent’s research, where parents identified extra travel costs as their largest additional expense during their child’s cancer treatment, closely followed by food.
“Food is another expense, Chemo does funny things to an appetite! Sometimes Daisy would eat packets and packets of Parma Ham, some days endless trips to McDonalds, other times 10 packets of Quavers in one sitting.
“It’s hard to keep up…you stock up on all these things only to find the next day it’s something different!
“Buying food in hospital is expensive and there is often not much space to store perishables.
“It’s exasperating but you just want them to eat…anything some days.”
CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families, providing vital emotional, clinical, practical and financial support during and after treatment. Daisy’s primary treatment centre was the John Radcliffe Hospital in Oxford, which is where they came into contact with the CLIC Sargent team.
“Rebekah our CLIC Sargent Social Worker was amazing.
“She sorted out my benefits for me, which really helped with all the additional costs, it was odd to get them, but they were truly a life saver.
“The forms are horrendous and you have no idea how to apply. Rebekah could answer all the questions with knowledge that you just don’t have as a parent.
“I seem to remember I was also given a cheque by CLIC Sargent before my benefits came through - and I was stunned to be given it!
“CLIC Sargent truly were headache and life savers.”
Kate Lee, Chief Executive of CLIC Sargent, said:
“The pressure of managing finances causes considerable stress and anxiety during what is an already impossible time for families. This is not right or fair.
“Following the initial shock of diagnosis, treatment often starts immediately and can take place far from home. Suddenly families see their lives transform, as their priorities shift to support their child through their illness.
“CLIC Sargent will continue be there for as many children and families as we can by providing practical and financial support but more needs to be done to ease this financial burden and help these families cope with the impact of cancer on their lives.
“That is why we are calling on the Government, banks, energy and transport companies to implement a series of measures that will make a real difference to families coping with childhood cancer."
CLIC Sargent has launched a petition to Prime Minister Theresa May to act now to ease the financial burden of childhood cancer.
Lidl UK has raised £1million for children and young people’s cancer support charity CLIC Sargent and is the lead sponsor of Childhood Cancer Awareness Month.
Daniela Tulip, Head of CSR at Lidl UK, said:
“CLIC Sargent’s research has highlighted the very real issue of the cost of cancer for families across the UK. As headline sponsor of Childhood Cancer Awareness Month, Lidl UK is proud to support CLIC Sargent in its bid to ease this financial burden and make life that little bit easier for families struggling to cope with a childhood cancer diagnosis.
“Lidl recently achieved its target of raising £1 million for CLIC Sargent, six months ahead of schedule.
"This amount has enabled CLIC Sargent to fund 40,000 hours of care for children and young people, and their families, who are going through cancer treatment.”