MP for Bristol West Thangam Debbonaire, whose nephew was supported by the charity, hosted an event in Parliament on Tuesday 6 September, during Childhood Cancer Awareness Month.
An audience consisting of MPs and representatives from across the charity and health sectors, transport companies and energy providers attended the event and heard from young people and parents who spoke frankly about their struggles to cope with the financial impact of cancer and a benefits system they feel is “not fit for purpose”.
Our new research
CLIC Sargent’s new research revealed that on average families spend an extra £600 each a month when a child is diagnosed with cancer. Income often goes down, as parents are forced to give up work, while costs go up, leaving many families in spiralling debt.
Struggling to access financial support
Young people at the event challenged MPs that they were “falling down a hole in the benefits system” with many struggling to access financial support of afford basic bills like rent or food, with many left feeling they had become a financial burden on their parents.
Wen Stone, who was supported by CLIC Sargent, spoke about her experience of receiving a diagnosis while at university.
She said: “There’s a lot of things that need to be looked at and changed. The government has to realise that outgoings don’t stop just because you are ill. Benefits need to be quicker because your costs start going up immediately but income goes down.
“I had no income and no savings when I was diagnosed and had to rely on my parents and my mum had to go down to working part time. She would work in the morning and then travel two hours to see me and then drive back so she could be at work again in the next morning. That was our life for three and a half months. The cost of travelling was enormous.”
Bradley Gudger, 22, from London, also told the audience about the difficulties of claiming Personal Independence Payment (PIP).
He said: “I feel like young people with cancer just fall into a gap when it comes to the benefits system. I have regularly felt victimised, like I am not worthy. I have repeatedly had to ‘prove’ my disease and get several consultants to write letters to prove I have a chronic illness.
“It is very difficult to determine how difficult things will be later down the line when you are diagnosed and communicating with the Department of Work and Pensions is hard work.”
Lynda Brake, from Brighton, who is a single parent of a child diagnosed with a brain tumour, said she did not know what she would have done without her CLIC Sargent Social Worker who was able to organise a grant and speak to different organisations to explain the situation and ease Linda’s financial worries.
She said: “One moment I was working and everything was fine but then he was diagnosed and everything changed. We had to travel back and forth from Brighton to London every day which was expensive. My son used to think it was his fault which is awful to hear when your child is ill.”
Cancer costs campaign
CLIC Sargent is calling for a number of changes that would help ease the financial burden on children, young people and their families after a cancer diagnosis. These include:
- A review of travel assistance available to parents and young people, with recommendations for reform to be made by the end of 2017.
- Immediate financial support to be provided from the point of diagnosis to every patient.
- Financial services and energy companies to review their vulnerable customer policies to ensure they include parents of children with cancer and young cancer patients.
At the parliamentary event, Thangam Debbonaire MP urged the attendees to continue raising awareness of CLIC Sargent’s campaign and encouraged people to contact their individual MPs to lobby the Department of work and Pensions and the Department of Health to help raise awareness of the financial impact of cancer.
She said: “I was delighted to be able to host this parliamentary event to share the recent research by CLIC Sargent into the financial impact of cancer.
“CLIC Sargent has made a number of recommendations on how this financial burden can be eased, which are to be welcomed, and I look forward to working with the charity over the coming months to make sure the Government hears these recommendations and acts upon them.”
CLIC Sargent Chief Executive Kate Lee said: “The parliamentary event was a wonderful opportunity to share our Cancer Costs research with a range of people who can help us achieve the aims of our campaign. It is not right or fair that so many children, young people and parents find themselves financially worse off following a cancer diagnosis and we are urging as many people as possible to join our campaign. I’d like to thank everyone who attended the event, particularly those who spoke about their own experiences of childhood cancer.”
Lidl and Childhood Cancer Awareness Month
Lidl UK is the headline sponsor of this year’s Childhood Cancer Awareness Month and Head of CSR Daniella Tulip was one of the speakers at the parliamentary event. Lidl UK has raised £1million for CLIC Sargent.