Funding and who pays for Palliative Care
Explaining funding of palliative care
If you or your loved one have been recommended palliative care, you may be wondering how this is funded and if you will need to pay for it yourself. There are many things you are probably worrying about at this time, so we aim to demystify the funding aspect of palliative care so you have all the information you need and can make the best choices for your situation. Here, we will cover how much palliative care might cost, how long it can last, how you can fund this, and who pays for what.
At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of domiciliary care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 seniors with personalised, tailored care at home. So whatever questions you have about paying for home care services, we can help.
What is palliative care?
Palliative care is often associated with end-of-life care, but this is not always the case. In fact, it is designed to provide pain management and symptom management for anyone with a serious illness, whether life-threatening or not, which means it can be used alongside other treatments that could aim to cure a health condition. You can learn more about the difference in these two types of care in our guide: End-of-Life Care vs Palliative Care
Whether palliative care is being used as an additional treatment, or as part of end-of-life care, it often involves a combination of physical and psychological treatment to help anyone with a serious illness to manage their pain and symptoms. This requires a team of specialist doctors, nurses, and other care workers to provide a number of services, all with the aim of making the person as comfortable as possible.
You may find more helpful information on the specifics of this type of care in our guides: What Is Palliative Care? and Palliative Care At Home: What To Expect
How much does palliative care usually cost?
Every year, around 56.8 million people (including 25.7 million in the last year of their life) require palliative care, and for many the cost of care can seem frightening, especially if you are facing a condition that requires an unclear length of treatment. However, understanding how much care may cost can help put your mind at ease about how much this might be for you, and how much may be funded from other sources.
In the case of palliative care at home, a number of services may be used to help you, for example you might benefit from home care workers visiting your home only a couple of times a week for companionship, or you may require live-in care that includes night care. Both of these examples will amount to a different cost.
According to Marie Curie, the typical cost of specialist palliative care (for end-of-life care) at home is around £145 per day. In many cases this may be less than the same care in hospital which is estimated to cost around £425 per day.
The cost of palliative care will depend on how much care you need, and the location of your care:
- If you are receiving palliative care in a care home or nursing home, you will be paying for round-the-clock care that could amount to between £800 and £1,078 per week, according to Age UK.
- If you are receiving palliative care in a hospice, this could be free (many hospices will be covered by the NHS or funded by charities), however some people believe hospice care could be of lesser quality than other types of palliative care due to a lack of funding.
- If you are receiving home-based palliative care, this could be free if you qualify for NHS Continuing Healthcare, however many people choose to pay for their home palliative care themselves to give them more specialist options and flexibility over the services they use.
Ultimately, palliative care costs differ vastly depending on factors such as location, amount of care needed, and the specific type of care. Palliative care can mean a number of services, such as mobility equipment, home alterations, specialist care (for example, for cancer or dementia), night care, holistic treatments, and more.
We have created a full guide on the costs associated with home care which you can read here: The Cost Of Home Care.
If you are worried about the cost of accessing palliative care at home, we encourage you to reach out to our helpful team at Home Instead so we can discuss what you might need and roughly how much this could cost. Often paying for your care can feel daunting, but we have years of experience helping people find the best care for their needs and budget, so feel free to reach out to us to discuss.
Who pays for palliative care?
In the UK, there are several ways to pay for palliative care at home:
Through the NHS
Palliative care is usually provided by the National Health Service (NHS), which is free at the point of use for patients. Palliative care services may include things like medication, visits from healthcare professionals, hospice care, and other support services – all of these are typically covered by the NHS if you are in hospital or a hospice. If you want to receive palliative care at home, you may need to undergo a NHS Continuing Healthcare Checklist to access funding, but this is relatively simple – you can learn more in our guide: What Is A Continuing Healthcare Checklist?
Through charitable organisations
Charities in the UK also offer funding and grants to those who need it, which could include access to hospice care too. These charities often receive their funding from public donations or government grants, and can help to support patients undergoing palliative care at home to make sure they have access to additional services and support resources they may not be able to access through the NHS or pay for themselves.
By self-funding
There are several options under the umbrella of self-funding palliative care at home, because not everyone can afford to fully self-fund their care, while others may be able to cover all costs.
Option 1 – Partially-funded palliative care
With NHS Continuing Healthcare, you may be able to have your palliative care partially funded by the NHS, and top up the rest yourself, which is an option many people take. This usually happens if your capital amounts to between £14,250 and £23,250. In this case, you could still be eligible for financial support from your local council to pay for home palliative care, but you may also have to contribute from your own income too, for example from your pensions.
Option 2 – Self-funded home care
If you live in England and Wales, you may need to pay for your own home care if your savings and assets are above the means test threshold, which is £23,250 in England, or £24,000 in Wales. This means your income is likely to be high enough to cover the cost of your own palliative care, so you will usually be required to pay for this yourself.
How long does palliative care last?
If you are self-funding (or partially self-funding) your own palliative care, you may be concerned about how long this type of care will last, and as a result, how much this will end up costing.
You can find helpful information on when palliative care might begin in our guide: When Should Someone Be Offered Palliative Care?
As to how long this might last, it can be extremely difficult to establish how long someone’s care will last. Research has found patients with a serious illness who were given palliative care lived longer than those who did not receive this type of care, but further studies have found the length of palliative care is largely dependent on factors such as the type of condition the person has, where their palliative care is taking place, which country the patient lives in, and other factors.
A 2020 review of studies involving over 11 million patients receiving palliative care during the end-of-life stage found that prior to passing away, the median duration of palliative care was 18.9 days. However, in other cases palliative care for a terminal illness has been found to last anywhere from a few days to several months or over a year, so it is incredibly difficult to predict how long someone will continue to receive this type of care for.
You may find more information on how long palliative care might last in our guide: The 5 Stages Of Palliative Care
If you are self-funding palliative care at home and you are running out of money, remember that if your capital drops to less than the £23,250 threshold in England (£24,000 in Wales), your local council may assist with continuing to fund your care. To action this, you will need to request an assessment from the council at least a few months before your funds sink below the threshold.
How do I fund palliative care?
If you are self-funding your palliative care at home, there are a few ideas for how you can do this, including:
- Using savings and investments
- Combining funds from your pensions or property
- Downsizing your home and using the acquired money to pay for care
- Using equity release if you own your home, which can offer cash from the value of your property
- Requesting financial help from loved ones
- Looking into what benefits may be on offer to you
- If you release equity from your home or already have savings, you could purchase something called an immediate needs annuity, which means your care fees will be met for as long as necessary
If you are unsure which option is the best one for your situation, you can speak to an accredited financial adviser from the Society of Later Life Advisers (SOLLA) who can usually point you in the right direction.
What if I need end-of-life care?
If you or a loved one needs end-of-life care, this can be a difficult and stressful time, and the last thing you need to be worrying about is how you will fund your home care, and whether or not your funding will come through in time. Here are a few things you should know about funding end-of-life care at home:
- There is a Fast Track Pathway available through NHS Continuing Healthcare, as having a terminal illness is considered a ‘primary health need’
- Having a terminal illness does not mean you automatically qualify for NHS Continuing Healthcare, so you should still go through the application process and arrange an assessment – if you have a terminal illness make sure this is mentioned when you arrange your assessment to fast-track the process
- No matter how much money you have, you should undergo a Care Needs Assessment through your local council to see if you are entitled to any help with your care, and to give you advice on what type of care you need
- If you live in England and are eligible for NHS Continuing Healthcare (fast-tracked) then you can opt to have your funding as a Personal Health Budget, which means you have more control over the care you receive – for example, you can choose to have palliative care at home using the services you feel are best
- If you are receiving benefits, there are special rules for those who have a terminal diagnosis, so you can fast track claiming benefits such as Universal Credit, Employment and Support Allowance (ESA), Attendance Allowance, Personal Independence Payment (PIP), Disability Living Allowance and more
- If you require certain adaptations made to your home to continue living there with a terminal illness, you may be entitled to a Disabled Facilities Grant
If you would like to know if there are any other benefits you may be eligible for, you can take a look at our guide: Financial Benefits For Pensioners: Topping Up Your Income.
At Home Instead, we understand the stress that can come with receiving palliative care, whether for a terminal illness or simply to manage your pain and symptoms. Our home care services aim to help older adults retain independence and stay in familiar surroundings during this difficult time, and we can tailor our services to meet your exact needs.
We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful at any time of life, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.