The charity’s comments come as the government’s Work and Pensions Committee is holding an inquiry into the assessment process for PIP and Employment and Support Allowance.
CLIC Sargent is calling for improved training for PIP assessors in acute conditions, to make it easier for patients to receive the support they need.
It also wants more young patients to share their own experiences in accessing benefits.
Financial support can be vitally important for young cancer patients, with CLIC Sargent research indicating that they spend an average of £360 extra every month while going through treatment. Many patients also were left waiting months before they could be assessed for the benefits they needed
Almost half of those young people applied for PIP and many found the process stressful and needed support with the forms.
Assessors were found to lack awareness of the symptoms and long term requirements of cancer patients, while young patients found the assessment process to be stressful and stigmatising.
Several young people felt that medical evidence they provided was discounted, while particular impairments, including amputations, were not included in assessment reports. Some found they lost their PIP support after being re-assessed, despite no change in their symptoms.
Clare Laxton, Assistant Director for Policy and Influencing at CLIC Sargent, said: “Young people have told us that the assessment process for PIP can be particularly difficult and that assessors often lack the understanding and knowledge required to assess the impact of their condition.
“The questions asked are not tailored to a cancer diagnosis and people’s levels of award are often inconsistent, while the appeals process can be a traumatic and unnecessary ordeal for young people, many of whom do not feel comfortable giving evidence to a tribunal, if the process goes that far.”
“We know that things need to change, so that assessors have an understanding of illnesses like cancer, and these young patients can get the support they need, when they need it.”
CLIC Sargent wants to find out more about young people’s experiences of claiming PIP. Any young cancer patients who have applied for PIP can complete the charity’s survey.
Shadnaz Jalali, 21, underwent six rounds of chemotherapy following her diagnosis of non-Hodgkins lymphoma in October 2016.
Her CLIC Sargent social worker, Rachel Driver, suggested she apply for PIP. Her chemotherapy meant her overall health would fluctuate week by week. On bad weeks she couldn’t do simple things like bathe or dress herself without help. A few weeks after applying, she received an appointment with an assessor.
“When the assessor arrived she was a bit late and seemed a bit flustered and she asked me lots of questions that didn’t really make sense to me or seem relevant”
“I tried to tell her about how my chemo affected me on different weeks and how other health issues I have affect me too, but she wasn’t interested and just wanted to ask the standard questions on her form, which was frustrating.
“I’ve had a kidney transplant, which means cancer treatment can make me even more ill, and I tried to tell her about it, but she just said: ‘let’s stick to the cancer please’. I didn’t feel like she was listening or understood much about me and my illness at all.”
When Shadnaz’ assessment came back she had scored a 0 for all questions, the lowest score possible, declaring her able to look after herself without support.
It took four weeks, following a written intervention by Rachel, for the assessors to change their mind, altering the scores to 12 – the highest requirement possible.
Rachel said: “These assessments can be stressful at the best of times, but this was one of worst ones that I’ve had to sit through. The assessor arrived late and rushed through the questions. And she didn’t seem to have even a basic understanding of how cancer and cancer treatment affects people and their care and mobility needs.”