Young people with cancer tell CLIC Sargent PIP is failing them

CLIC Sargent, the UK’s leading cancer charity for children and young people, and their families, today voiced concerns that changes in the Welfare Reform Act 2012 may have further exacerbated the disadvantages facing young people with cancer. 

This follows today’s report by Parliament’s Committee of Public Accounts, in which Committee Chair Margaret Hodge MP condemned the implementation of Personal Independence Payment as “nothing short of a fiasco”.

Liz North, CLIC Sargent Director of Communications and Campaigning, commenting on the implementation of PIP, said: “Young people with cancer supported by CLIC Sargent have reported waiting months, often many months, to hear the outcome of their PIP claim, during which time they have received no financial support.

“For a young person diagnosed with cancer and undergoing often gruelling treatment this may have a significant impact - at a time when they need to be concentrating on coping with their cancer. They deserve a benefits system that responds effectively to their needs.”

Since the new benefit started to be rolled out in April last year, young people with cancer have been reporting long delays in the processing of their claims.

Laura Dunn, 23, from Burton-on-Trent, was diagnosed with bone cancer Ewing Sarcoma last year. Laura’s CLIC Sargent Young Person’s Social Worker filled in her PIP forms in early December last year, while Laura was recovering in hospital and on morphine after an operation to remove part of her pelvis. Despite having applied more than six months ago, she still hasn’t received a decision.

Laura said: “I’m fed up. You feel ‘Why am I doing all the chasing here?’.  I’m in and out of hospital, so I don’t feel great when I come home and having to chase them up isn’t top of my priorities because I’m just hoping to get better. But I need these benefits to live. I’m lucky that I’m living with my mum who can help support me financially. I’d like to go out with my friends but I can’t afford to without these benefits. I’ve put on a lot of weight with steroid treatment, so need to buy new clothes, but I can’t afford them either.”

Louise Robinson, whose son Ashley, 18, was diagnosed with Hodgkin's lymphoma had to wait for nearly a year before her payment came through on 6 June, despite making weekly calls. She had applied on 23 July last year shortly after Ashley was diagnosed.

Her CLIC Sargent Young Person’s Social Worker helped with financial grants, but the family from Worksop, Nottinghamshire, still struggled financially. Ashley was sometimes having intensive chemo seven days a week at hospital and they had to pay £8 a day on parking.

Louise said: “It was the added stress, as well as the financial problems it caused. I was getting really worked up. We were being told Ashley’s life was uncertain, which was really stressful. We were trying to get across to them that he hadn’t got a common cold – he had cancer and it was a life threatening condition.“

In partnership with other charities, CLIC Sargent is working with the Department for Work and Pensions to ensure these young people can get the financial support they need and that the new benefit does not negatively impact them.  CLIC Sargent, which provides clinical, practical and emotional support to children and young people, and their families, is working closely with young people to understand the impact of their experiences claiming PIP and to identify where the new system works well and where it can be improved.
Laura said she was very frustrated by it all. “I’ve been chasing them and chasing them but nothing happens,” she said. “I called in February after my first round of chemo this year and was told my claim was being processed but that I’d need an assessment. I explained I couldn’t get to the assessment centre because I’m on crutches and can’t sit in a car for more than 10 minutes without a lot of pain.”
Laura, who is having chemo and due to have radiotherapy and further surgery, added: “I waited for four weeks before calling again. In March I was still waiting. In April I heard I’d get an assessment at home, which happened. After that I still hadn’t had a decision by 28 May so I phoned again. I was told it would take up to three weeks but I called yesterday – three weeks later – and was told the same thing, so I’m still waiting.”