Dumfries family backs campaign calling for fund to help families of children and young people with cancer with travel costs

A Dumfries family who spent hundreds of pounds on petrol taking their young daughter to hospital for vital cancer treatment says the Government needs to do more to help other families struggling financially.

Dumfries family backs campaign calling for fund to help families of children and young people with cancer with travel costs

Claudine Brindle, 44, and her daughter Emma Conchar, 14, are backing a campaign by charity CLIC Sargent after new research, released for September’s Childhood Cancer Awareness Month, found that children with cancer are having to travel twice as far, and spend twice as much, on getting to and from hospital than adults(1). On average, families of children and young people with cancer face a round trip of 60 miles to get to hospital for treatment, adding up to at least £180 a month in petrol costs(2).

Research shows that young cancer patients in Scotland are travelling an average of 68 mile round-trip for treatment. 

Now CLIC Sargent is urging the Government to set up a Young Cancer Patient Travel Fund to help thousands of families afford to get to hospital and back for vital cancer treatment.

Emma was 13-years-old when she was diagnosed with thyroid cancer in October 2017, after her parents noticed she was jerking her neck in funny movements a few months before. Initially, doctors suggested it was because Emma was using her mobile phone too much. 

But in September 2017 after Emma’s glands became swollen and didn’t go down, she was sent for an ultrasound. Three days later, the family was told that they’d found a lump near her lymph nodes and they would need to be referred to a consultant in Glasgow – 80 miles from home. 

On 31 October, after further tests, doctors confirmed that Emma had cancer. 

Claudine said: “We’d had some discussions with the medical staff about what could be wrong so by that point we knew what they might be thinking. But I was still in disbelief; our world was turned upside down.

“We knew that it meant some big changes; that we’d have to be travelling up and down to Glasgow for Emma’s treatment.”

Emma and the family travelled to Glasgow in November for a six hour operation to have her thyroid and lymph nodes removed, and then had to stay in for four days to recover. 

The family was supported by the hospital to arrange accommodation to stay in a local hotel so that they could be close to Emma. While the cost was covered for three nights, Emma’s parents had to pay out for the fourth when she needed to stay an extra day to recover. 

Emma was then referred for radioactive iodine treatment in January 2018, staying two nights in a special isolation ward with lead lined rooms. 

Because radioactive iodine therapy can make patients radioactive for a few days after treatment, the family could not travel by train and had to make most of the journeys by car. 

Claudine explains: “We did some of the journeys to Glasgow by car and some by train depending on what we were in for. Obviously when she had the radioactive iodine we couldn’t come back by public transport because she can’t be around certain people or within close distance. At first we weren’t even sure that we’d be okay in the car with her but luckily we could all travel back together in the end.”

Because of the nature of childhood cancer, different cancer types require specialist treatment - which is only available at a small number of specialist treatment centres across the UK. That often means families have to travel around the UK to get to treatment – one family is currently travelling over 800 miles to get to the specialist treatment centre.

Each time the family have travelled to Glasgow they would spend over £25 in petrol, or if travelling by train it could be upwards of £50 plus taxi fare to get to the hospital. 

Claudine says: “We’re still going backwards and forwards because there’s different blood tests, injections and scans that have to be done. We’ve had about 12 trips altogether to Glasgow over the last year for appointments or admissions.”

Cancer treatment for young people can take anything from months to over three years, consisting of hundreds of journeys back and forth to the hospital, whether that’s for chemotherapy, routine blood tests or their child falls suddenly ill in the middle of the night and needs urgent medical care. Under the current NHS’s Healthcare Travel Costs Scheme, just 6% of families receive financial support with travel costs(3).  

The cost of getting to hospital and back is just one of the added costs faced by families when a child is diagnosed with cancer. On average, a family of a child with cancer faces spending £600 a month extra, on top of every day expenses and bills, which is often money families struggle to find(4). 

Kate Lee, CEO at CLIC Sargent, said:

“Being told that your child has cancer is one of the most horrendous situations that any parent can imagine. No parent should ever have to worry about not having enough money to take their child to hospital for cancer treatment. The current Government travel cost scheme is not fit for purpose and available to too few families. The NHS’ provision of universal healthcare is free at the point of entry yet, in reality families are footing the bill for it. 

“On top of what can be years of treatment, countless back and forth to the hospital, there is the constant worry and need to have enough petrol in the tank and make sure the car is roadworthy so the family know they can make it to hospital whenever they need to. 

“We know that cancer costs and families are really struggling financially, leaving families counting pennies, relying on charity grants, borrowing money from family and friends, wiping out savings or facing being plunged into debt. This is not good enough and the government needs to set up a Young Cancer Patient Travel Fund so that families can focus on their child, rather than worrying about mounting bills.” 

CLIC Sargent is asking the public to sign its petition calling on the Government to set up a Young Cancer Patient Travel Fund. Please sign the petition at: www.clicsargent.org.uk/ccam 

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

1. Research and data supported by a corporate partner

2. CLIC Sargent ‘Are We There Yet?’ report, page 6

3. CLIC Sargent ‘Are We There Yet?’ report, page 6

4. CLIC Sargent’s Cancer Costs report - https://www.clicsargent.org.uk/sites/files/clicsargent/cancer-costs-report-2017rebrand.PDF 

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 household income of just £16,000 or below or in receipt of income related benefits.

About cancer in children and young people

Today, 11 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.