Charities call for U-turn on changes to disability benefits that will restrict cancer patients from accessing financial support

Charities warn changes to PIP would be a further blow to cancer patients already using savings to cover costs 

Today (Tuesday 10 June), a group of UK charities supporting people with cancer have written to Liz Kendall MP, Secretary of State for Work and Pensions, calling for a U-turn on the UK Government’s upcoming changes to Personal Independence Payment (PIP). The charities are repeatedly hearing from cancer patients, who already struggle financially, concerned what the changes mean for them. 

The Cost of Waiting report published by Young Lives vs Cancer, the leading UK charity for children and young people with cancer and their families, shows 3 in 5 young people with cancer use their savings to cover costs during treatment. Young people with cancer face an extra £700 a month in costs following a cancer diagnosis, and these costs have increased by 15% since 2017.

Charities, including Young Lives vs Cancer, Anthony Nolan, Leukaemia Care, Bone Cancer Research Trust, Brain Tumour Research, Blood Cancer UK, CCLG: The Children and Young People’s Cancer Association, Solving Kids Cancer, Maggie’s, Melanoma Focus, Oracle Head and Neck Cancer UK, Target Ovarian Cancer, Myeloma UK, Neuroendocrine Cancer UK, Young Tongues and more are concerned that the financial impacts that cancer patients currently face will only get worse with the introduction of these new restrictions on PIP.  

The UK Government’s Green Paper: ‘Pathways to Work: Reforming Benefits and Support to Get Britain Working’ outlines the planned changes to the application scoring process for PIP, a vital source of financial support for cancer patients aged 16 and over. The changes include adding an extra requirement for patients to score four points on one category in the Daily Living component, in addition to the existing scoring requirements. This change, charities say, will leave many cancer patients (16+) no longer eligible for PIP, which provides up to £187.45 per week, despite being impacted by such a serious medical condition/disability, and will require more support to navigate the complex application process for PIP. 

Young people will be hit hardest by the changes announced in the Green Paper, with additional proposals to restrict access to the Health Element of Universal Credit to only those 22+, and proposed changes to the lower age limit for PIP to move from 16 to 18. 

On 3 March, before the Green Paper announcement, Young Lives vs Cancer published the Cost of Waiting, a report into the impact of the current benefits system for children and young people with cancer and their families. This research showed that, on average, young people and families face extra costs totaling £5,000 while they wait an average of seven months before receiving disability benefits. The research also found 3 in 5 young people and families had to use their savings after diagnosis to cope with these costs, whilst the benefits system is not supporting them. 

Shelly Johal, Young Lives vs Cancer Social Worker at Royal Marsden, said: “A cancer diagnosis can have a huge financial impact on young people. Many are often not able to work, they also face extra costs to travel long distances for treatment in main treatment centres, higher bills due to being home more often and need to purchase new clothing due to weight gain or loss. 

“PIP is a vital benefit for many of the young people we support, to help fund these extra costs. If fewer young cancer patients are eligible, they would be at potential risk of not being able to get to appointments and receive the treatment they require. They too may find themselves living in poverty and not having the funds to live a satisfactory quality of life.” 

In today’s letter to the Secretary of State for Work and Pensions, the charities say: “PIP is a vital lifeline for many cancer patients, providing up to £187.45 in financial support every week for cancer patients in need. Receiving PIP is not a luxury or a bonus – it is essential support to help cope with the spiralling, unavoidable costs that come as soon as you hear the word “cancer”. 

“Going ahead with these changes will fundamentally impact many cancer patients across the UK, amplifying financial instability, risking pushing more people into poverty, keeping people out of work, and causing unnecessary health and mental health implications.   

“We urge you and your Department to reconsider and retract the changes to PIP scoring thresholds in particular, and work with us and cancer patients across the UK to develop effective solutions to the challenges in the benefits system that truly meet cancer patients’ needs.” 

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer says: “Being diagnosed with cancer as a young person has an impact on almost every area of life. At a time when they should be focused on getting through treatment, young people are struggling with the significant financial impact cancer brings.  

“Many young people are already struggling financially before their diagnosis and then all of a sudden need to fund the extra costs of food, travel to treatment and clothing – all while living with cancer and often not being able to work. 

“PIP is a vital support to so many young people we support, to help make sure they can afford the extra costs of cancer and get to the treatment they need. If these changes come into effect, young people we support will end up in an even worse financial position than they are already, with some losing out on PIP all together, and we can’t let that happen.”  

Colin Dyer, Leukaemia Care CEO says: “These changes to PIP would leave some cancer patients who are already struggling to stay afloat without the vital support they need. At Leukaemia Care, we’ve helped more than 40 people with their PIP applications in the last year, and we know most would have struggled with their application without our input. Under the new proposals, almost none would qualify at all. That’s not just a tightening of criteria; it’s shutting the door entirely. We’re calling on the Government to scrap these changes.” 

NOTES TO EDITOR 

Young Lives vs Cancer’s Cancer Costs report found that young people with cancer and families face extra costs of almost £700 a month on average following a cancer diagnosis. Seven in 10 young cancer patients and their families experience a loss in income and earning following a cancer diagnosis.  

Young Lives vs Cancer’s Cost of Waiting report found young people with cancer and families:

• Experience a seven-month average wait time from diagnosis to decision for receiving disability benefits
• Face £700 in extra costs per month on average after diagnosis, amounting to £5,000 while waiting for benefits
• had to use their savings (3 in 5 young people and families) following diagnosis
• had to borrow money following diagnosis (either from friends/family or loans) (1 in 2 young people and families) 

Anthony Nolan reports patients with acute conditions such as blood cancer and blood disorders experience an average loss of £30,000 to their household income in the year following their diagnosis and during treatment. This puts patients and families at risk of homelessness as they struggle to meet mortgage or rent payments. 

Leukaemia Care found the number of patients reporting to have been affected financially since diagnosis has increased from 43% in 2017 to nearly 60% in 2023, and patients’ average monthly expenditure also increased significantly from £181 to £270 per person, with particular rises in energy and fuel costs.