Posted on Tuesday 12 November 2019
“We wiped out our savings within the first couple of months, everything we had was gone” – Travel costs leave families of young cancer patients struggling to afford basic essentials
- One in three families struggle to afford rent or mortgage costs due to the extortionate costs of travelling for a young person’s cancer treatment;
- A third of parents struggle to afford food for themselves or their partner;
- One in five families struggle to afford heating in their home.
Parents of young cancer patients are struggling to keep a roof over their heads or heat their homes because of the huge cost of taking their child to hospital for life-saving treatment, new research from CLIC Sargent has revealed .
The research shows that one in three families are struggling to afford to pay their rent or mortgage. Some families are even threatened with eviction from their homes because they are left to choose between travelling to hospital or paying for basic, day-to-day essentials.
Debbie Martin’s son Finn, 7, was diagnosed with leukaemia in October 2015.
The family live in Warminster, Wiltshire, but their nearest specialist treatment centre is in Southampton – 50 miles from home. Finn’s treatment lasted for over three years, finishing in January 2019. Last year the family almost lost their home after building up mortgage arrears when the financial impact of childhood cancer treatment hit them hard.
Debbie said: “For over three years we had to travel to either Southampton – 50 miles away – or our local hospital – 30 miles away – for Finn’s cancer treatment. When Finn was first diagnosed we were in Southampton for seven or eight weeks straight because he was so unwell.
“We wiped out our savings within the first couple of months, everything we had was gone. I had to give up work so that I could be with Finn in hospital, which meant that we lost one salary straight away. We had arrears stack up on our mortgage and in September 2018 we were hit with a court date for eviction.”
The research has also shown that one in five families struggle to afford heating in their home, and a third of parents are struggling to afford food for themselves or their partner as they grapple with the high costs of travelling to the hospital.
Young cancer patients have to travel to specialist cancer centres across the UK for life saving treatment, which is often not available at their local hospital. This means families are burdened with an average round-trip of 60 miles to get to and from hospital for treatment, spending at least £180 a month on petrol when treatment is at its most intense . Other families are forced to pay out hundreds in taxi fares or public transport costs.
The length of cancer treatment for young people varies from months to over three years, which can mean hundreds of journeys back and forth to the hospital.
In the last 12 months, another 4,450 young cancer patients and their families across the UK have together spent around £5 million simply travelling to treatment. CLIC Sargent is calling for the creation of a Young Cancer Patient Travel Fund to reduce the financial burden on families.
As well as getting to and from hospital, families face other added costs when a child is diagnosed with cancer, spending an average of £600 a month extra , on top of everyday expenses and bills. The biggest expenses families face other than travel include food, hospital car parking, energy bills and car-related costs. Costs are hitting families at a time where parents may have had to give up work or cut their hours to be with their child.
Debbie said: “Dealing with a childhood cancer diagnosis has devastated our financial state. Everything gets expensive very quickly. The stress was so high all of the time, at a time when all you really want to do is be there to comfort your child.
“After we received the letter telling us that we could be losing our home I was on the phone pleading to the mortgage company, who didn’t want to hear it. I told them that Finn was due to finish his treatment in a few months and we would no longer be spending so much on travel to hospital, so we just needed to work out a repayment plan from that point. But they didn’t listen.
“In November we went to court and thankfully the judge saw that we’d been paying what we could and that we had plans to sort out the arrears as soon as we could manage. The whole situation was hideous though, there’s no way this should be happening to families. It’s not about the house – I’d give my house away 10 times over for my child’s life, but we were in a vulnerable situation and not able to see a way out.
“This could happen to anyone whose child suddenly gets a cancer diagnosis, losing everything you’ve ever worked for. Families are going through their worst nightmare – there needs to be more help.”
Kate Lee, CEO at CLIC Sargent, said:
“How can it be right that parents could lose their homes or be left at financial breaking point when they’re already dealing with the unbelievable stress of their child having cancer? Parents shouldn’t have to live in fear about whether they can afford to take their child to hospital for life-saving treatment when they are already terrified for their child’s health. One of the key principles of the NHS is that it’s free at the point of use, but with families spending hundreds on travel before they even step inside the hospital door, the system is clearly failing them.
“We know that the current travel costs scheme is not fit for purpose and is available to too few families. Families are facing countless journeys to and from the hospital for treatment, often stretching over years. They are being pushed to the limit, with parents being forced to go without meals or unable to pay their rent, just so that they can put petrol in the car and get their child to hospital.
“Regardless of what’s been happening in Westminster, every day families are travelling hundreds of miles and paying hundreds of pounds to get their child to life-saving cancer treatment. Families are at breaking point – scraping together pennies, borrowing money from family and friends, relying on charitable grants. We’re asking all party leaders to listen to young cancer patients and their families and commit to a Young Cancer Patient Travel Fund.”
CLIC Sargent is asking the public to send a message to all political party leaders, calling on them to commit to a Young Cancer Patient Travel Fund if they become the next Prime Minister. Sign your support now.
Notes to editors
For more information, please contact Rebecca Bourley on 020 8752 2938 or email Rebecca.Bourley@clicsargent.org.uk. For out of hours enquiries, call 0844 848 1189.
 CLIC Sargent developed a Facebook poll around essentials that families are unable to afford due to the financial cost of travelling for treatment. The poll was promoted in our Parents and Carers Facebook group in May 2019. 147 parents/carers from across the UK responded to the poll.
 CLIC Sargent ‘Are We Nearly There Yet?’ report (2018), page 6
 CLIC Sargent ‘Cancer Costs’ report (2016), page 6
NHS’s Healthcare Travel Costs Scheme
The NHS’s Healthcare Travel Costs Scheme is the current scheme providing financial assistance for travel to hospital. It is only available to families with a low income and savings, investments or property (not counting the place you live) that don’t exceed £16,000, or if they are in receipt of income related benefits. A CLIC Sargent survey found that only 6% of parents reported having received help from the Healthcare Travel Costs Scheme .
About cancer in children and young people
Today, 12 more children and young people in the UK will hear the devastating news that 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
When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit www.clicsargent.org.uk
Note to sub editors
Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.
CLIC Sargent has appointed its new Chair of the Board of Trustees, Professor Sir David Haslam who will take up the role in January.
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