Living with a terminal illness or caring for someone who is terminally ill can be expensive. We examine what financial help is available.

Will I have to pay for end-of-life care?

There are a number of sources of financial help with end-of-life care costs, but it can be difficult to work out exactly what you’re entitled to and it can vary depending on where you live. Throughout this section we signpost you at appropriate places to relevant organisations and charities for further support.

One of the tricky things is the grey area between the healthcare services offered by the NHS and social care services offered by the local council.

Although healthcare provided by the NHS is free, not everyone is entitled to free care outside of the hospital and hospice setting. Even if you are entitled to free nursing care, you may have additional care needs that are not covered. For example, you may need extra support to remain independent, such as help with dressing or using the bathroom.

NHS funding

The NHS may fund nursing care costs under certain circumstances. There are two different funding schemes available. Follow the links to read more detailed articles about the eligibility criteria and how to obtain an assessment.

NHS Continuing Healthcare: under this scheme the NHS pays for carers to help you in your own home or your care home fees. The funding is not means tested, so it's not dependent on how much money you have. However, the eligibility criteria are very high, and having a terminal diagnosis isn’t necessarily enough to receive funding. The NHS says you must have ‘a complex medical condition with substantial, ongoing care needs’. Without it, you are likely to have to fund some or all of these costs yourself. There is a fast-track assessment if you’re nearing the end of your life and your health is deteriorating quickly.

NHS-funded Nursing Care: this is a contribution towards nursing costs if you need care in a nursing home. If you qualify, the NHS will pay a flat rate directly to the care home towards the cost of your nursing care. This benefit is also not means tested, but if you are self-funding your care in a nursing home, the amount of FNC received by the care home should be deducted from your fee.

Local authority funding

Your local authority may make a contribution towards the cost of what are known as social care needs, such as help with washing or dressing and meal preparation. This is based on the level of your need and your financial situation.

Your GP or community nurse can refer you to the local authority for a needs assessment. If you are in hospital or a hospice, you might be referred to the hospital or hospice social worker. Or you can contact the local authority directly yourself.

Your local authority is required to assess your care needs, even if they are not obliged to finance them. The assessment is used to work out:

• what help you need
• what care is available
• how much of it you’ll have to pay for.

They must also provide advice on how to get the help you need. For example, they should be able to tell you about agencies that provide care in your area and other organisations, such as local charities, that could provide help.

Find out more about local authority funding.

Help from charities

Many national and local charities provide financial or practical help with end-of-life care. This can include:

• free support, including advice, counselling and practical help, such as home visits or transport to medical appointments
• information and advice on what help you're entitled to. They may also help you to fill out benefit applications or talk to the local authority on your behalf
• one-off grants from charities that specialise in your health condition
• free hospice care, such as at Katharine House Hospice, for those nearing the end of their lives, including medical care, counselling and advice.

See our article on help and support at the end of life for a list of national charities that support specific needs.

Benefits and entitlements at the end of life

State benefits are another potential source of help. If you're suffering from a health condition or disability, caring for someone else or recently bereaved, you may be eligible. Not all of these benefits are means tested, so they aren’t necessarily based on how much money you earn or what savings you have.

Attendance Allowance is a benefit for people with who have reached State Pension age who need extra help to stay independent at home, due to an illness or disability. It's not means tested.

Personal Independence Payment (PIP) is for people aged 16 to State Pension age who may need help with daily activities or getting around because of a long-term illness or disability. If you're in receipt of PIP when you reach State Pension age, you'll continue to receive it rather than switch to Attendance Allowance. PIP is also not means tested.

Disabled Facilities Grant (DFG) is a one-off grant that helps you to pay for changes you need to make to your home in order to continue living there. For example, widening doorways, installing a stairlift or fitting hand rails. A DFG is means tested and provided by your local authority.

Your rights and benefits at work: if you are diagnosed with an incurable illness while working, you are likely to have additional disability rights to consider. There are also benefits you could claim if you need to reduce your working hours, such as New Style Employment and Disability Benefit (ESA) and Universal Credit.

What if I don’t have long to live?

It is possible to get claims for benefits fast-tracked, and to be paid at a higher rate if you've been told you have a limited time to live, usually six months or less. This applies to PIP, Attendance Allowance, Employment and Support Allowance and NHS Continuing Healthcare. How quickly your claim can be processed varies for each benefit. We explain more on each of the relevant benefits’ pages.

Private palliative care

You may want to consider paying for palliative care privately, if you feel that you'd like more care than you're entitled to receive for free. For example, you might want 24-hour care provided by a live-in nurse, or you may wish to move into a care home.

Equity release

If you own your own home, equity release is another option for financing care. This lets you release money that is tied up in your home, without selling it, to help pay for care. The sum raised against the value of your house is repaid when the house is sold. If the home is owned by a couple, the money isn’t usually repayable until the death of the second partner. But you have to pay interest on the money you take out, which can be expensive.

Find out more about equity release (including lifetime mortgages and home reversion schemes) on the Which? Money website . We also recommend that you should always get advice from an Independent Financial Adviser before making a decision about equity release.

Council Tax

Council Tax reductions or exemptions are also available. Local authorities set their own rules on these, but they should take account of your income and particular hardship, such as disability or ill health.

If you or a partner have dementia, or another condition that 'affects social functioning and intelligence', you should be entitled to a reduction or full exemption, depending on your circumstances.

Check with your local authority to find out the situation where you live.

Financial help for carers

Carer's assessment: if you're a carer, the first step is to obtain a carer’s assessment. This looks at your needs and decides if you're eligible for any kind of help. It's available to anyone aged 18 or over who is providing care for another adult. For example, you might be entitled to respite care so that you can take a break from caring. You're entitled to an assessment regardless of your financial situation or how much care you provide.

Carer’s Allowance: this is a government benefit paid to you if you care for someone close to you. You don’t have to be related to or live with the person you care for to claim it. The benefit is not affected by your savings, but it is affected by earnings. You're usually entitled to continue receiving Carer’s Allowance for eight weeks after the death of the person you were caring for.

Related pages

• Planning ahead: a collection of articles that look at planning and decisions for the end of life, including planning care in advance, making a will and Lasting Power of Attorney.
• What is hospice care?: find out what different types of care a hospice provides following a diagnosis of an incurable illness.
• Your needs as a carer: the role of a carer can be very challenging, but there's help out there for you, both financially and to support your mental health.

The EPiC Resource Centre is kindly sponsored by Cleenol: working for a cleaner, safer, kinder world.