Lymphoma

In the UK, people who are employed but too ill to work are entitled to basic statutory sick pay for up to 28 weeks (for current rates visit GOV.UK website - also listed in our General Health and Medicine resource sheet). These interviews were collected before the recent changes to the benefit system, so in some cases talk about Incapacity Benefit and Disability Living Allowance, which have now been replaced by Employment and Support Allowance and Personal Independence Payment. The financial impacts and concerns are still valid today. 

Most people we spoke to who were working had needed some time off while they were treated (see ‘Impact on work and other daily activities’) and those who were employed received sick pay. Some employers have their own sick pay scheme and several people said they had been paid their full salary for the first six months, and some had received half their salary for an additional period. Usually a person had to have been working for the same company for at least two years to be entitled to more than 28 weeks' cover. A woman who had been on unpaid maternity leave when her lymphoma was diagnosed was ineligible for statutory sick pay. Those who remained off sick for long periods stopped getting sick pay and had to rely on other state benefits, health insurance policies, their savings or their spouse’s income. Some retired on health grounds so received an occupational pension. Self-employed people are not eligible for statutory sick pay but may be able to claim other state benefits.

A general practitioner was paid his basic salary by his practice for six months but lost his usual additional income from out-of-hours work so used his savings to make up the difference. An engineering contractor lost his income when he couldn’t work so lived entirely off his savings. A woman sold her business and lived off her husband’s income for the duration of her treatment. A writer said he continued to earn money during his illness from his published work, and another said her income dropped substantially but she had just enough to pay her bills.

Several people, both employed and self-employed, were glad they had taken out sickness insurance to provide for them if they got ill; this had helped offset the shortfall from loss of earnings. One man said he would have been in trouble without his insurance cover as he had no financial reserves. A woman had used her insurance money to pay for organic food, massages which lifted her spirits, broadband internet access for finding information about her illness, and a new television and sofa because she knew she would be spending a lot of time watching TV.

Employed people whose sick leave continued beyond the 28 week limit for statutory sick pay could claim Incapacity Benefit now called Employment and Support Allowance*. Self-employed people who have paid appropriate National Insurance contributions can also claim this. Those whose illness affected their mobility or needed help in looking after themselves could claim Disability Living Allowance (now replaced by Personal Independence Payment). People who are terminally ill can apply for both Employment and Support allowance and Personal Independence Payment under special rules which mean their claim will be dealt with quickly and they may receive a higher rate of benefit. People over 65 who need help in looking after themselves can claim Attendance Allowance. An unemployed man with a wife and daughter to support said his social worker had claimed Disability Living Allowance for him with the help of a letter from his GP but the application was rejected. His Macmillan nurse successfully reapplied and he received backdated payments. Many people found out about their entitlement to state benefits from friends, social workers or Macmillan nurses, who often helped with the application forms. Some people found they were entitled to a disabled parking permit. A woman said she didn’t find out about her entitlements until she was nearly ready to return to work, so didn’t claim. For more information about state benefits contact the Macmillan Benefits Helpline (freephone 0800 138 6568), GOV.UK the Department for Work and Pensions or DSS Benefit Enquiry Line- freephone 0800 882 200 or Citizen's Advice Bureau.

In addition to losing their own income some people’s spouses also lost income if they had to take time off work to look after an ill partner or their children. Some people talked about the additional costs of travelling to hospital and parking. Patients on low incomes (with less than £16,000 of savings) can get help with the travel costs associated with NHS treatment by asking at the hospital for refund form HC5. Some people who lost hair after chemotherapy had to contribute to the cost of NHS wigs or bought wigs privately. At the time of interview some of the people we talked to had to pay prescription charges for some medicines. Prescription charges for cancer patients in England have since been abolished; there are no prescription charges in Wales and they are being phased out in Scotland and Northern Ireland. One woman had to pay for extra domestic cleaning to reduce her risk of infection after treatment. Others incurred extra childcare costs, but one woman who usually worked had saved on childcare costs by being at home.

A mature student lost her PhD stipend when she became ill and chose to rent a second home in another city to become eligible to receive a particular treatment. A young woman on learning that her treatment might make her infertile considered having embryos frozen but the NHS took too long to decide whether to pay for it. She couldn’t pay for it herself so didn’t have it done (see ‘Treatment-induced infertility’). She also considered paying for a drug to boost her red blood cells rather than have blood transfusions but eventually her consultant agreed to prescribe it (see ‘Blood cell counts and infection risk’). A man chose to pay over £1000 from his savings to have diagnostic tests done privately. Several people had private health insurance but found that after they used it to pay for some aspect of their treatment their premiums increased; one man cancelled his policy. Others found that travel or life insurance policies became more expensive after their illness. Macmillan Cancer Support has a guide to travel insurance which lists companies that will insure people with cancer.

Last reviewed February 2016.

Last updated February 2016.