Jane Wingrove from Flackwell Health in Buckinghamshire, whose daughter Daisy was diagnosed with Ewings Sarcoma aged 8, is speaking out about their experiences and backing a new campaign from children and young people’s cancer support charity CLIC Sargent that aims to highlight and ease the hidden financial burden of cancer.
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.”
For more information, an interview or images please contact Claire Monger on 020 8752 2938 or firstname.lastname@example.org Outside office hours call 08448 481189.
About the research
Two online surveys were carried out by 279 parents and 149 young people recruited through CLIC Sargent’s networks, our care professionals and social media. All percentages reported are drawn from the number of people who answered each question, not the total sample size.
About cancer in children and young people
Every day, 10 children and young people in the UK hear the shocking news they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.
About CLIC Sargent
CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life. For more information visit www.clicsargent.org.uk
Since establishing itself in the UK in 1994, Lidl has grown consistently and today has over 630 stores in England, Scotland and Wales. Voted ‘Best Supermarket 2016’ by readers of Good Housekeeping, Lidl has experienced continued growth with over 6 million British shoppers now flocking to the supermarket each week, half a million more, per week, than in 2015. The family supermarket takes pride in providing top quality products at the lowest possible prices throughout the country from Kirkwall to the Isle of Wight. Regular world food themes give customers a chance to excite their taste buds with a range of produce from all over the world including the South of France, Italy, Poland and Cornwall and in recent years Lidl’s seasonal wine collection has been embraced by the British public, enabling households up and down the country to buy premium wines at incredible value. Whilst its roots may be in Germany, Lidl UK is passionate about working with British producers and two thirds of its products are sourced from the UK. In addition to food, Lidl also has bi-weekly special offer promotions on products ranging from cycling gear to hiking accessories, kitchen gadgets to BBQs. These offers change on a Thursday and Sunday and are subject to availability. For more information and a convenient store locator, please visit www.lidl.co.uk