Funding end of life care

Funding end of life care can be expensive, not just for the person you care for but also for you as the carer. The person you care for may have had to give up work because they are too unwell and/or you may have had to give up work to provide the care they need.   

There are a range of sources of financial support, including the government, the NHS, your local council, charities and grant giving trusts. You may find it very difficult to work out what you or the person you care for is entitled to in terms of funded services and who provides what and where. What can be particularly difficult is getting to grips with the difference between healthcare services and social care services and what is free and what has to be paid for.

The person you care for may be entitled to social care support, such as help with washing and dressing, funded by their local authority (Surrey County Council). Getting funded support will depend on the person’s level of need and their financial position. If caring for someone at home, their GP or district nurse can refer them for a needs assessment; or the person themselves, or you as their carer, can also contact social care teams directly.  

If the person you care for is in hospital, hospital staff should refer to the hospital social work team for a needs assessment, but again you can contact the team directly yourself. 

Even if the person you care for is in a good financial position the local authority are still required to assess their needs as it helps to work out:

1. what help the person needs
2. what care is available
3. how to get help
4. how much you will have to pay for it
5. what to do if something goes wrong

This should include information about local agencies that provide care, as well as other organisations and local charities that could provide help.

The NHS may fund nursing care costs in certain circumstances for the person you care for as they approach end of life. There are two different types of funding:

1. NHS Continuing Healthcare: under this scheme, the NHS pays for care home fees or pays for care workers to help someone in their home. It is not means tested. However there are eligibility criteria that have to be met for the person you care for to receive this type of funding, and having a terminal diagnosis will not necessarily guarantee funding. The person you care for must have a complex medical condition with ongoing care needs. Without this, they are likely to have to fund some or all of their care.
2. NHS Funded Nursing Care: under this scheme, the NHS pays a contribution towards nursing costs if someone needs care in a nursing home. If the person qualifies, the NHS will pay a flat amount directly to the nursing home towards the nursing element of their care. Again this is not means tested. You should be assessed for NHS continuing healthcare before a decision is made about whether the person you care for is eligible for NHS funded nursing care.

As well as many national and local charities providing information and advice on end of life care, some can also provide free support, practical help such as a sitting service, transport to medical appointments, and one-off grants. Hospices can also provide free care for those nearing end of life, including medical care, carer support, and counselling.

State benefits are another source of financial help. You or the person you care for may be eligible. Not all benefits are means-tested. It is possible to get claims for benefits fast-tracked and to be paid at a higher rate if the person you care for has been told they have a limited time to live, usually less than 6 months.

The following benefits may be particularly relevant at end of life: 

Attendance allowance

A benefit for people over pension age currently 66 years, who need extra help to care for themselves due to an illness or disability. It is not means tested.

Personal Independence Payment (PIP)

PIP is for people between 16 and pension age, currently 66 years, who may need help with daily living and mobility due to a long-term illness or disability. If the person is on PIP and reaches pension age, they will continue to receive it rather than switch to Attendance Allowance. It is not means tested.

Disabled Facilities Grant (DFG)

These are grants to help disabled people make changes in their own homes for example widening doorways for a wheelchair, or adapting toilet facilities. Depending on income, recipients may have to contribute towards the cost of any work done.

Council Tax support, Council Tax reductions, and Council Tax exemptions

Local councils administer local Council Tax Support schemes. The details of each scheme will vary between local councils. These Council Tax Support schemes are means tested. There are also Council Tax reductions and exemptions when reduced or no Council Tax liability exists. Some people are not taken into account as part of the household when calculating what council tax must be paid. An example of this is a person who meets the criteria of being “severely mentally impaired”. If the person you care for has dementia or another ‘severe mental impairment’ they will be entitled to a reduction or full exemption; it is not a matter of discretion on the part of the individual council. If the person you care for has been diagnosed as being severely mentally impaired by a doctor and live with one adult, the household will receive a 25% discount. If however, they live on their own, they will receive a 100% discount. For more information on Council Tax liability, support, and reductions go to CarersUK.

Carers Allowance

Carers Allowance is a benefit paid to you if you care for a disabled person for at least 35 hours per week. You don’t have to be related to the person or living in the same house to claim it. It is not affected by your savings but can be affected by your earnings. You are also entitled to continue receiving the benefit up to 8 weeks after the person’s death. Please note receiving Carer’s Allowance can affect the benefits that you or the person you care for receive.

Pension Credit and Universal Credit

Both these benefits are means-tested. Pension Credit is usually paid if a claimant is over pension age and their income is low enough to qualify. For couples, usually, both have to be over pension age to be able to claim Pension Credit. Universal Credit and Pension Credit can top-up other income you may have, and Universal Credit can help you to pay your rent.

Go to the Citizens Advice benefit calculator to find out what you may be entitled to.

The person you care for may wish to pay for palliative care privately, particularly if they wish to receive more care than they have been told they are entitled to receive for free. They may want to have a 24 hour live in care worker or consider moving into a care home. This may involve using savings, cashing in a pension, or using an equity release scheme if they own their own home. You may also be able to defer payment which is a long-term loan that can be requested from the council to help you pay for care home fees. 

Things to think about

1. Explore with the person you care for all funding sources to help with end of life care costs.
2. Speak to a benefits advisor early on as to what benefits you and the person you care for are entitled to.

Benefits can be complicated. There may be other payments you may be able to claim, for example, help with paying your rent, or DLA for your child if they are disabled or have a long-term illness. Always seek advice if you are unsure, or struggling to pay your bills.