Caring for someone with a terminal illness

Financial Issues

When someone is diagnosed with a terminal illness there are likely to be financial implications to cope with. Carers may give up work to care for their friend or relative, or they may need to pay for care at home or in a care home. Additional costs of heating bills, food and laundry, and personal care can all mount up. These extra expenses can create financial worries and add to the stress that carers and their friend or relative are already going through. Some people we talked to said that finances were the least of their concerns at this time. However, caring was expensive and they had to make ends meet, sometimes with little support from the state.
Some carers we talked to felt fortunate that they had savings, pensions and critical illness cover or that they or their relative were able to take time off work at full pay. This had enabled them to look after their relative or friend. Many said that without this they could not have coped financially.
 
There are several state benefits available to people who are diagnosed with a terminal illness. These include Disability Living Allowance, Personal Independence Payment (PIP), Attendance Allowance, Carer’s Allowance, NHS continuing healthcare and Disabled Parking badges (see below).
People who were not eligible for social services care needed to pay for care for their relative, which is often very expensive. Some people needed live-in care workers, others had care workers coming into the home several times a day or week, and some needed to pay for a residential care home. Carers who are looking after their sick friend or relative’s needs throughout the day but need to sleep at night can obtain a night sitter, whose role is to stay awake and deal with whatever care needs arise, although Tricia was told by an agency she contacted that a night sitter could not deal with her mother’s incontinence (see Tricia's clip below). Cassie’s parents hired care workers to come into the home through a private agency that had been recommended by social services. They were assessed and paid a contribution towards it.
In some areas of the country there are services that provide crisis response and short term care for people at the end of life that are provided free of charge. These services can be accessed through community health professionals and hospital discharge teams. Grants to support daily living expenses are also available from Macmillan for people with cancer who are on low incomes.
 
A few people continued to have financial worries after their relative had passed away. Funeral costs, probate issues, loss of income and the additional costs when caring for their ill relative had left some people with debts they needed to repay, at a time when they were finding life very difficult.
 
When Janet’s civil partner Chris died of ovarian cancer, she was grateful that she was able to receive a survivor’s pension which meant that she didn’t immediately need to go out and earn some money. Having this financial support helped her when she was adjusting to life without Chris.
 
A few people did not have a pension or an income after their relative died, which made life financially hard. Jacqui received bereavement benefit for a year, which she used to pay her heating bills.
Free financial advice is widely available, including from' Citizens Advice Bureaux, community and neighbourhood centres, Maggie’s Centres, Welfare rights (www.welfarerights.net), Age UK and Christians against Poverty.

There are a number of benefits that people can apply for that can help with the cost of providing personal services:

Personal Independence Payment (PIP) is a benefit for people of working age (16-65) with disabilities (or those that are terminally ill) who need help with daily living activities or help getting around, or both. It has replaced Disability Living Allowance (DLA) for anyone making a new claim. PIP isn't based on National Insurance contributions and isn't means-tested. You can claim it whether you're working or not.

Attendance Allowance is a tax free and isn’t means tested. It is paid to people over 65, to help with the cost of their care or supervision needs, which should have existed for six months before claiming unless you are terminally ill and then you can apply straight away (under DS 1500 special rules). Any level of Attendance Allowance can increase your entitlement to Pension Credit, Housing and Council Tax Benefits, and health benefits, etc. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you could still qualify for Attendance Allowance.

Disability Living Allowance (DLA) for children is tax free and isnt means tested. It is for people looking after children under 16 to help with the extra costs of looking after a child who needs supervision or help with their daily or nightly care needs or has mobility problems. They must have had these difficulties for at least 3 months unless they are terminally ill and then you can apply straight away.

Some people may be eligible for Carer’s Allowance. To be eligible you must;
•    spend at least 35 hours a week caring for a disabled/terminal ill person - you don't have to live with them
•    care for someone who receives the higher- or middle-rate care component of Disability Living Allowance, either rate of Personal Independence Payment daily living component, or any rate of Attendance Allowance 
•    not earn more than £102 a week (after deductions)
•    not be in full-time education.
Carer’s Allowance is taxable. It can also affect your other benefits. It is worth taking advice when apply for Carer's Allowance as state benefits paid to the person you look after can sometimes be reduced.

NHS Continuing Healthcare is free care outside of hospital that is arranged and funded by the NHS. It is only available for people who need ongoing healthcare and meet the eligibility criteria. This is sometimes called fully funded NHS care. Continuing healthcare is not provided for everyone and an assessment is carried out to decide whether someone is eligible. To be eligible for NHS continuing healthcare, the person you look after must be assessed as having a "primary health need" and have a complex medical condition and substantial and ongoing care needs. Not everyone with a disability or long-term condition will be eligible. You can talk to your doctor or nurse about getting an assessment or you can contact the continuing healthcare team in your local clinical commissioning group (CCG). If someone in a care home gets NHS continuing healthcare, it will cover their care home fees, including the cost of accommodation, personal care and healthcare costs. If NHS continuing healthcare is provided in the home of the person, it will cover personal care and healthcare costs. It may also include support for carers. 


The Blue Badge scheme
If you or your passenger has severe mobility problems, it gives you exemption from some parking restrictions and access to designated parking spaces. In England, Blue Badge holders are exempt from certain parking restrictions, including being allowed to park:
•   free of charge at on-street parking meters and in Pay and Display bays
•   on single or double yellow lines for up to 3 hours, except where there is a ban on loading or unloading.

For more information see our resources section

Last reviewed September2014.
Last updated September 2014.

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