Cancer can often have a huge impact on a person’s life. This is why the Equality Act considers those of us who are living with or beyond cancer as having a disability. This protects us from discrimination across our lifetime, and we are still covered even if we don’t have any symptoms or consider ourselves disabled. To read more about how the Equality Act protects you, check out Cancer Research UK.

For those of us who do find that our cancer has affected our mobility or daily living, we can apply for Personal Independence Payments (PIP). PIP exists to help with the extra living costs of having a long-term physical or mental health condition or disability. It is not an out-of-work benefit, and many people who claim PIP use it to help them stay in employment. In 2023, Macmillan estimated that more than 250,000 people with cancer (one in 12) receive vital financial support via PIP.

Financial Toxicity

Living with or beyond cancer often involves something we call “financial toxicity”. This is a term used to describe the additional costs that having cancer adds to your life and the impact of these on our physical and mental wellbeing [1]. The impacts include lost income, depletion of savings, additional or worsening debt, loss of self-esteem, greater anxiety, and depression.

Patients suffer from this the world over, even if their country has universal healthcare. We are at high risk of additional financial burden, including the costs of treatment or support, disruptions in employment, insurance premiums, as well as accommodation and transportation costs from attending our treatment and appointments [1]. These pressures are not just felt by ourselves, but also our caregivers and support networks [2].

Changes to the PIP system

The Government’s recent Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper, along with their multiple media appearances, has led to much confusion and fear for those of us who rely on this financial support to live our lives as fully as we can. If you would like a more accessible way to review the Green Paper’s key points, check out Disability Rights UK for their summary.

Anyone who has applied for PIP will tell you it is not an easy system to navigate or to be awarded from. This is why the fraud rate for PIP payments is reported as 0% by the Department for Work and Pensions. The experience can feel so draining for those of us with cancer, that a blood cancer patient created the PIP Helper with Turn2Us to help us navigate the system. Macmillan also provides comprehensive information for people applying for PIP and have Macmillan Welfare Rights Advisers you can speak to through the Macmillan Support Line for free on 0800 808 00 00.

A call to action

As both OUTpatients’ CEO and a cancer patient myself, I am deeply worried about the tightening of access to PIP. Reducing the support available to people with and beyond cancer carries real risks including disruptions to our treatment and care, lower quality of life, and lower survival [3]. With other financial support options for cancer patients closing, and the cost of living continuing to rise, our community is in a financial vice grip with diminishing options. 

I urge the Government to release its impact assessments for public scrutiny, and call on them to review their plan to change the eligibility criteria which may leave vulnerable people with and beyond cancer in peril.

In solidarity with my cancer community,

Stewart O’Callaghan
CEO OUTpatients