Information released on World Cancer Day earlier this month revealed that although more people are being diagnosed with cancer, more people now are surviving the disease. Cancer Research UK tells us that 1 in 2 people born after 1960 in the UK will be diagnosed with some form of cancer in their lifetime but, over the last 40 years, survival rate has doubled. People say that, after the diagnosis itself, money worries are their biggest concern. Cancer is expensive. Yesterday MPs voted to cut Employment Support Allowance from £102.15 a week to £73.10, from April 2017 – a cut of £29.05 per week or nearly £1,500 a year. This is being badged as an incentive to return to work but the cruel reality is that work is not always possible for those living with cancer. There are also significant inequalities in cancer incidence, mortality and survival. Meaning these cuts, like many other punitive welfare reforms, are likely to hit the poorest, hardest.
The cost of cancer can be considered in terms of health economics, the cost of treatments and the millions of pounds spent on research and testing new drugs. But what about the everyday costs to someone diagnosed with it? Whether it is keeping the car topped up with fuel for trips to hospital, higher heating bills or the worry of a reduced income. Macmillan has calculated that four in five cancer patients are hit with an average cost of £570 a month as a result of their illness. Additional costs include prescriptions and wigs, adjustments to the home, increased heating cost, hospital transport and parking costs, child care costs and increased insurance premiums. According to Macmillan almost 400,000 people with cancer struggle to pay bills because of diagnosis.
For many people with cancer, the hardest side effect to deal with is fatigue; people report that fatigue can be overwhelming. Macmillan commissioned research from the University of Bristol to calculate the financial impacts of cancer, revealing just how hard the costs are hitting people. Whilst there is advice and support available about extra money or benefits, forms are lengthy and dealing with organisations like the Department of Work and Pensions can be challenging.
There is also a lot of stigma surrounding welfare and benefits. The Daily Mail branded one cancer survivor a ‘scrounger’ without reporting the full story of her individual circumstances including her previous cancer diagnosis. The use of ‘jobless’ in the headline already confirms the intended bias of the article that divides people into the ‘deserving’ and ‘undeserving’ poor. These stigmatising labels also appear in forums for people affected by cancer. In one discussion post a woman asks for advice about obtaining a blue badge following a mastectomy which she is unsure whether or not she is entitled to. Someone replies advising her to “leave the blue badges to those that really need them”, the woman then defends herself saying she is “not a scrounger”.
Coupled with these stigmatising labels, there is also the more worrying context of wide-scale reform of the welfare system and local authorities facing squeezed budgets. Many people across the UK will face tough financial decisions. People living with cancer are not an homogenous group and some cancer patients risk more disadvantage than others.
We know that cutting services hits poorer people hardest as they use more services. Cancer mortality rates are higher for deprived groups. Unskilled workers are twice as likely to die from cancer as professionals, and while mortality rates vary widely across the country, they tend to be highest in areas with significant levels of deprivation. We know that diagnosing cancer early is critical for survival but a range of harder to reach groups including BME groups and disadvantaged communities have unmet needs relating to information, support and cancer services. The risk of being diagnosed with certain cancers is greater among the most deprived families and communities and, for most types of cancer, survival rates for the most deprived patients are worse. With the poorest already disproportionately affected by cancer, not recognising the costs of cancer is a double whammy in terms of health and economic inequality.
As with many social issues the burden often falls to charities to support people most in need. Appropriate and targeted service provision is central to the reduction of cancer inequalities. We need to reduce the cost of cancer and support people so they don’t have to make difficult financial choices, at times having to choose between heating and eating. My own organisation, Tenovus Cancer Care takes support services and treatment into communities to help cancer patients. But demand outstrips supply with over 100 people typically on a waiting list to see a Cancer Support Advisor. Patients’ health care needs are rightly the priority for health services but they should not have to struggle for financial support they are entitled to. Our front line team have helped 2,200 cancer patients access more than £5m in the past 12 months alone. Despite this, with the numbers increasing we’ve got a backlog of close to 150 people who urgently need our help. Over 50 of them are terminally ill with less than 6 months to live. We are working to prioritise those in greatest need, but there are some patients who are dying before they receive the money they are entitled to.
We must ease the financial burden for those affected by cancer, but importantly we must recognise the inequalities that exist meaning the poorest in society suffer the most. Health and economic inequalities should remain central in policy discussions. With a continued focus on prevention and early detection of cancer we must make sure that those living in deprived communities have access to information, treatment and support. Support is also needed to allow people living with cancer to continue working if appropriate. The process for accessing financial support needs to be simplified to enable people to access benefits when they need them, especially in light of recent welfare cuts adding to the unequal cost of cancer.
About the Author: Dr Lisa Whittaker is Research Engagement Officer at Tenovus Cancer Care in Cardiff, she was previously Knowledge Exchange and Community Engagement Officer at University of Glasgow.