Many people of working age who develop leukaemia have to stop work temporarily or permanently (see ‘Work and daily life’) and may lose income. In Britain employed people who are too ill to work are entitled to basic statutory sick pay for up to 28 weeks. Some employers have their own sick pay scheme and several people had been paid their full salary for six months; some continuing on a lower salary for longer. Frances received her full salary for a year. Self-employed people are not eligible for statutory sick pay but may be able to claim other state benefits.

Employed people whose sick leave continues beyond the 28-week limit for statutory sick pay can claim Employment and Support Allowance (formerly Incapacity Benefit). Unemployed and self-employed people who have paid appropriate National Insurance contributions can also claim this. Those whose illness means they cannot look after themselves can claim Personal Independence Payment (PIP) if aged under 65 or Attendance Allowance (after age 65); there are different rates depending on the level of disability. The terminally ill can apply under special rules which enable their claim to be dealt with quickly; they should automatically receive the highest rate care component of this benefit. People caring full-time for someone who receives Personal Independence Payment (PIP) or Attendance Allowance may be eligible to claim Carers’ Allowance.

It can be difficult for people who are feeling ill to think about financial issues or find out about state benefits, so it is important that family members or professionals help with this. Many people had learned about their entitlement to benefits through a charity or a hospital social worker, who often helped to fill in the applications forms. Dianne suggests that professionals will paint a more realistic picture of a person’s incapacity, making a successful application more likely. Kerry waited weeks for a social worker to help with her application. Some people’s applications were refused and they had to reapply or appeal. Thelma’s husband tried to claim the Carer’s Allowance but was unsuccessful.

Several people had succeeded in getting one or more benefits. Ian’s Disability Living Allowance (now replaced by Personal Independence Payments for 16-64 year olds) enabled him to buy a car which he used for attending hospital appointments. He received some Incapacity Benefit in error and had to pay it back with his employer’s help. Frances’ partner was entitled to claim Incapacity Benefit as she was taking time off work to look after her. People who reached retirement age had their benefits replaced by a pension. Some were eligible for a disabled parking permit or exemption from road tax. For links to more information about state benefits see our practical matters resources.

Some people received payments from health insurance or critical illness policies that made up part or all of their lost income. Jim received payouts from two policies that amounted to more than his usual salary. Others regretted not having such policies. Some people had applied for grants from charities such as Macmillan, Leukaemia Care or CLIC Sargent. Ian received a payout from the police force for whom he worked; Kerry’s colleagues had a collection for her. Others received financial help from family.

Some people had no financial difficulties, either because they had retired before their illness, had remained in work, or received payments equivalent to their usual salary. Some people’s reduced income had been balanced by spending less, partly because they had gone out less. Others adapted their lifestyle and reduced outgoings further to make ends meet, particularly those whose partners had also lost income (see ‘Support from a spouse or partner’). Gilly considered selling her home but decided not to. Elsa had downsized her home and lived off her savings and benefits. Dianne cashed in some endowments to supplement her pension. After returning to work, Julie moved to a less stressful job and learned to live on a much reduced salary.

Some had spent extra money during the illness on counselling, complementary therapies, moving house or home adaptations. Chanelle bought a life insurance policy. Financial security was a source of worry for some, which added to the emotional stress of the illness. Janet would like to buy-in help at home but cannot afford it.

Another financial outlay associated with the illness was travel to hospital appointments and parking. Some people travelled long distances to hospital by car or taxi. Aley also used taxis to go shopping after his hospital discharge in order to avoid catching infections on public transport. Hospital parking fees were considered extortionate, especially when hospital visits were made daily by the sick person or their partner. A disabled parking permit not only made parking easier but could also reduce the cost. Patients on means tested benefits can apply for help with travel and parking costs. Those on low incomes can also get help with travel costs by asking at the local hospital for form HC11 (HCS1 in Scotland and HC11W in Wales). 

At the time of these interviews some people had to pay NHS prescription charges for oral chemotherapy and other drugs taken at home, whereas all inpatient treatment was free. Although buying a prepayment certificate could reduce the cost, some people thought the charges unfair for essential treatment. Prescription charges for cancer patients in England have since been abolished; there are no prescription charges in Wales, Scotland and Northern Ireland.

Travel insurance policies become more expensive after cancer. As a result some people limited themselves to short trips to Europe that were cheaper to insure than travelling further afield. Others took the risk of travelling without insurance. Len used to spend the winter in Tenerife but his insurance now limits him to a maximum of six weeks. Charities such as Macmillan and Leukaemia Care can suggest suitable insurance companies.

See more about money issues after having cancer.

Last reviewed: December 2018.
Last updated: December 2018.
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