The impact of welfare reforms on social work support to children with cancer

By Dara de Burca, former social worker and CLIC Sargent director of services

Being diagnosed with cancer as a young person is a life shattering experience. At a time when you becoming more independent, with all the psychological and social changes that brings, you are faced with gruelling treatments lasting up to three years.

Treatment is your focus, but cancer also brings a huge financial burden, which can have a serious impact on young people.

The Personal Independence Payment (PIP) is there to support and enable independence when faced with illnesses like cancer.

CLIC Sargent has been monitoring the impact of the move from Disability Living Allowance to Personal Independence Payment (PIP) for 16 to 64-year-olds since its introduction in April 2013.

Social work support

Our social workers, who support and advocate for young people with cancer, have reported that the experience of many young people with cancer using the new system has been horrendous.

Young people have reported delays of six months or more in their claims for financial support for needs they have as a result of treatment. And they say their experience of making the claim added to an already highly stressful experience.

In January, we published research with Every Disabled Child Matters and Contact a Family. It showed nearly three-quarters of young people with cancer who had applied for PIP disagreed or strongly disagreed the application process was straightforward, while 82% found the application process stressful and over half said it had a negative impact on their wellbeing.

Gruelling treatment

That research is further validated by reports from our social workers and young people we have supported. Laura, a young woman we supported with bone cancer, applied for PIP in December 2013 while recovering in hospital after an operation.

For six months she chased the application while in and out of hospital for more gruelling treatment. In February she was told she would need a face to face assessment. When she explained she couldn’t get to the assessment centre because she was on crutches, in pain and continuing treatment, shockingly, it took another three months before she got a home assessment.

A decision to award enhanced, back-dated support finally came in July 2014, after she had struggled for seven months with extra costs, no income because she had to give up her job and her Mum helping to make ends meet by taking two extra jobs.

Unecessary stress and pressure

This was despite Laura having a CLIC Sargent social worker who was able to help with advice on the application and act as an advocate, explaining her situation to her employer and others to provide some intermediate financial relief.

Laura was clearly entitled to PIP and she and her family shouldn’t have been put under this unnecessary stress and pressure. The purpose of PIP is to alleviate the very types of barriers that she experienced when trying to make her legitimate claim.

This is not acceptable. There had clearly been administrative failures, but equally the application process for PIP did not take into account the fluctuating nature of conditions like cancer, nor did it respond to the specific needs of young people, who, at the point of just becoming independent financially, find themselves in a situation like Laura.

High Court ruling

With our partners, we have been lobbying the Department for Work and Pensions to address the flaws in the new system, make it more age appropriate and make a commitment not to extend PIP as a replacement for Disability Living Allowance, which is still available to children under 16 affected by disability.

The problems continue. On 5 June, the High Court ruled the delays claimants have experienced are unlawful and face calls for the wider roll-out of PIP, planned for October, to be reconsidered.

The government needs to ensure the system works for the people who need it, and must address the problem as a priority.