Campaign to highlight the hidden costs of ill children

Stacie Lee and Kurt Knowles (both 25), are supporting children and young people’s cancer support charity CLIC Sargent’s Cancer Costs campaign, which highlights the hidden financial headache of coping with the disease.

Their son Lucien was two when he was diagnosed with a cancerous tumour in May, 2015, and is still undergoing chemotherapy.

Like many families in that situation, they were suddenly landed with extra petrol, parking and food costs as they took Lucien to and from Sheffield Children’s Hospital - with their monthly fuel bill rising from £50 to £300 a month.

The campaign urges people to sign a petition to Prime Minister Theresa May asking her to take action to help ease these financial problems.

CLIC Sargent’s research shows that parents have to spend an extra £600 a month on average on living expenses when their child is undergoing cancer treatment.

Stacie and Kurt received financial support from CLIC Sargent after struggling with the sudden extra costs.

“When we knew what money was coming in and going out each month we could manage financially, but suddenly life got a lot more expensive,” said Stacey, of South Crescent, East Dene.

As well as soaring petrol costs, the couple had to cope with £8.40 in parking charges every day for the first seven weeks, 

“It has been tough emotionally, and has also cost us a lot of money,” said Stacey.

She added: “Chemo changes how everything tastes, so we are always trying any and every food to get Lucien’s calorie intake up to the right level when he’s at home. 

“I think we must spend at least £400 to £500 on food a month, so our food bill has doubled.  

“Buying food and drink at hospital is really expensive, too.”  

CLIC Sargent, which has a specialist independent team based within Sheffield Children’s Hospital supporting children and young people and their families, gave the couple a £170 grant, arranged for Lucien to receive Disability Living Allowance (DLA) and applied for a disabled parking badge.

But Stacey said both took three months to come through, leaving them “in real trouble financially”.

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 to 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.”

CLIC Sargent’s petition to PM Theresa May can be signed online at www.clicsargent.org.uk/ccam.