CLIC Sargent social care staff spending a quarter of their time working with young cancer patients who have relapsed

A new report from CLIC Sargent, the UK’s leading cancer charity for children, young people and families, has revealed that a quarter of its social care staff’s workload is spent working with young cancer patients who have relapsed.

The report, Cancer Costs Again [1], released ahead of World Cancer Day on 4 February, highlights the emotional and financial impact on families when a child or young person’s cancer comes back.

The report also found that one in six of social work cases were supporting families whose child had passed away after a relapse or secondary cancer.

CLIC Sargent’s Cancer Costs research found that families are spending on average an extra £600 a month in additional costs during treatment, on things like travel to hospital, hospital car parking, and extra bills [2]. When a young person is told that the cancer has come back, these costs hit once again.

Clare Laxton, Associate Director of Policy and Influencing, at CLIC Sargent, said: “We often hear the incredible stories of young cancer patients getting to the end of treatment and celebrating that wonderful moment with their families. But the reality for many of the families we support is that they have been through it more than once.

“We’ve spoken to families who have been told the devastating news that their child’s cancer has come back, and they tell us how difficult it is to go through it all again. The costs they face have already hit hard, depleting savings and income dropping due to reduced working hours or a parent giving up their job completely to be in hospital with their child. Some families will be in debt from needing to keep their heating on all day while their child is not at school because they’re poorly, or from having to pay hospital car parking charges to be by their bedside through endless treatments, scans and check-ups.

“The emotional impact can be harder too. For teenagers or young adults in their early twenties who have been through cancer treatment and have started to get their life back on track by resuming education or going back to work, having to face going through treatment again can be overwhelming.

“That’s why this World Cancer Day we’re raising awareness of the extreme challenges families face when they’re told that cancer has come back, and the extra support they need to get them through the unthinkable.”

Caoimhe’s story

Caoimhe Wills, 22, from Belfast, was first diagnosed with acute lymphoblastic leukaemia when she was 12-years-old, and then relapsed in 2014 aged 18.

Caoimhe said: “I had a gut instinct that something was wrong when I was diagnosed with cancer for the second time. It’s almost as though my brain had prepared me to hear that the cancer was back. I had to go through chemotherapy, a bone marrow transplant, then full body radiation.

“I had to stay in hospital for a really long time because I was at risk of picking up infections so one of the worst things was the boredom and isolation, it was emotionally draining. You really go into your shell; I guess I put the real Caoimhe into hibernation for a while.

“I was so lucky to have support from my parents who I know had to cope with extra costs. There was extra petrol to drive me to and from the hospital for all of my appointments, and the heating bill must have been enormous as we basically had to keep it on all the time for a year and a half. I couldn’t get warm at all while I was on treatment so it just had to stay on.

“My CLIC Sargent Social Worker Laurena helped us out by arranging different grants which helped with some of the costs.”

Last year CLIC Sargent supported around 7,000 children and young people with cancer across the UK. To support CLIC Sargent this World Cancer Day, visit www.clicsargent.org.uk/worldcancerday

Notes to editors

[1] Cancer Costs Again, 2019

[2] Cancer Costs, 2016

For more information, an interview or images, please contact Rebecca Bourley on 020 8752 2938 or email Rebecca.Bourley@younglivesvscancer.org.uk

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.