Will I have to pay for end of life care?
There are a number of sources of 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. 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 nursing care outside of the hospital 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.
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 your care home fees or pays for carers to help you in your own home. 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.
- 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.
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. 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 you might be referred to the hospital 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, and
- 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.
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 for those nearing the end of their lives, including medical care, counselling and advice.
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 older people (65 or over) 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 64 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 65, 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.
- 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. You need to check with your local authority to find out the situation where you live.
Other benefits that are not specific to health or disability needs include:
- Pension Credit, which is available as a top up to a state pension.
- Housing Benefit, which helps people on a low income to cover their rent.
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 and NHS Continuing Healthcare. How quickly your claim can be processed varies for each benefit.
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.
Our searchable directory of care providers can help you find care in your local area. And if you're looking for more information about how to finance care, you can take a look at some of our articles on the subject.
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.
For more tips on ways to release additional funds, read the Which? Money guide to cashing in your pension.
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.
It’s important to be aware that if you claim certain benefits it may affect other benefits that you or your loved one receives. For example, receiving Carer’s Allowance can affect the benefits of the person who is being cared for. Explore our articles on Benefits and pensions for the elderly for more detailed advice.
End of life care helps people approaching the end of their lives to live as well as possible in the time remaining.
We explain the options for paying for care at home, from local authority support to paying for it yourself.
How to help yourself or a trusted family member to deal with financial affairs, including using third-party mandates.