How do I get care support in the UK?
Getting clear on care support, hospice and end of life care.
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Dying Matters Awareness Week 2026, a Hospice UK-led campaign, is from 4-10 May.
This year's theme is 'Let’s talk about Death and Dying'. “27% of people find it hard to talk about death with family or friends, and 30% bottle their feelings up. If we don’t talk about death and dying and bereavement, it can be harder to cope when we experience them.” (Polling commissioned by Celebration Day in 2025)
In my mind, I can’t separate this campaign from recent news and events about social care and the Assisted Dying Bill. It’s felt frustrating to me, as an unpaid carer in the UK. This excerpt from the recent press release by Hospice UK on April 24 sums up the situation:
Charities call for palliative care reform as assisted dying Bill falls. Hospice UK, Age UK, Marie Curie, Sue Ryder and Together for Short Lives call for urgent action in an open letter to Wes Streeting, as nearly one in three people die without the care they need:
“Despite months of polarising debates in Parliament about the bill there was one consensus – that palliative and end of life care provision needs to be reformed.
In their open letter to the Health Secretary, Wes Streeting, they remind him that he too has said: “Regardless of where people stood on the debate about assisted dying, the one thing that united everyone across the House was a belief that palliative care needs to be so much better than it is today, and that is what we will work on together”.
To anyone who isn’t caring for someone in the UK, this all may feel far removed from their everyday life. However, I’d encourage everyone who isn't aware of how to access care in the UK to start exploring what’s available in your local area for you and your loved ones before a crisis occurs. It’s separate from the NHS, not free at the point of need and availability, quality and services vary widely across the UK.
Disclaimer: This information is based on personal experience and from the perspective of a carer, not a care provider or social care expert. Always check with your GP about what’s available.
Where to start. Care Support in the UK
If you need care support in your home, ask your GP for advice about what their practice could offer, along with recommendations and referrals for equipment and care agencies. They may refer you to an occupational therapist or suggest a visit from a district nurse, depending on your needs.
Receiving equipment is one thing. Having hands-on care, support, or monitoring is another.
Anyone with assets over £23,250 must pay for their own care support. Below this threshold, contributions are made by the person needing care and the government on a sliding scale. If the individuals requesting care have long-term complex health needs, the NHS may also contribute to funding.
“Social care is not free at the point of use. It is not part of the NHS. Anyone who requests publicly funded social care must undergo a needs assessment and a means test, and only those with the highest needs and the lowest financial assets are likely to receive support.” (Kings Fund “Social care in a nutshell”)
In essence, anyone needing personal care support who has assets over £23’250 will be searching and coordinating with private companies and charities to find it. As demand grows and service availability is limited, coordinating care is challenging. Regardless of whether the customer is self-funding or the local authority is contracting the care, the providers can be the same for both groups. There are not enough care providers and personnel. The social care vacancy rate in England is falling, but remains higher than the overall unemployment rate (The Kings Fund April 8, 2026). There are more care homes and care providers in the South of England compared to the North. Care support is a postcode lottery.
Social care reform is overdue.
Baroness Casey, who’s leading the new independent commission on adult social care, said that Adult social care in the UK is being forced into a long-overdue “moment of reckoning”. She argues that, unlike the NHS, social care has never had a clear national “creation moment”: no shared agreement on what it is for, what people should expect, or who should pay. (Baroness Casey calls for a ‘moment of reckoning’ on adult social care 5th March, 2026). While Baroness Casey has written to the Secretary of State for Health and Social Care asking for some immediate government action, the commission’s full report will only be delivered to the government in 2028.
Transactional, time-bound care support requires specific directives.
It’s worthwhile detailing the specifics of what care support is needed (use this AGE UK article). Key questions focus on daily tasks, health, safety, and personal goals, enabling tailored care rather than passing a test. These assessments evaluate difficulties in areas like washing, dressing, cooking, and home safety.
Bear in mind that care workers are allocated time to complete specific tasks. They are given a certain number of ‘calls’ in a day. Within that time, they may need to make “call notes” to check-box completed tasks.
Here are some of the questions I asked different service providers after I reviewed the website, testimonials, and CQC reports:
“What can be offered, at what time of day, with what frequency?”
Understand whether there is clinical nursing support or not. For example, an agency may not provide wound care and catheter changes because these require clinical training. District nurses can offer some support.
What are care staff trained and allowed to do and not allowed to do?
Walk through an emergency scenario - who’s called when and why, and when are emergency services called?
Ask if it will be a different person each visit? How big is the team?
Who do you call if someone is late or if you need to change/cancel a visit?
Who do you call to discuss an issue?
Ask about insurance, training, and reference checks
When care needs increase
We contacted hospice care several months before my father died. Of course, we didn’t know that then. We only knew things were even more fragile. Paramedic calls had increased. Dad was shouting out for me every night, if not, several times in the night. I had little or no sleep.
The care support from local companies was not enough to meet our needs. In unpredictable circumstances, their services often disrupted the calm we built into the routine more than they helped. We were lucky that the local hospice charity could offer overnight monitoring. I was able to get some sleep, even if it was with one ear and eye open; it made a huge difference. We also found a private, self-employed care aide via a friend’s recommendation.
What is UK hospice care? Who can get it? How can you get it? Hospice UK answers these questions.
The reality is that vacancies in private care homes and hospice facilities (if there are any in the local area) have waiting lists. In-home care support depends on the availability and offerings of your local hospice, private agencies or other charities in your area.
So, it’s worth finding out what hospice care support is in your local area. Click here.
Challenges to care support in palliative and end-of-life care
Did you know that UK hospice care is 60% charity-funded?
Hospice in the UK is mainly funded by charities. Money from donations, gifts through wills, and sales of second-hand goods in charity shops funds end-of-life care. In England, on average, the NHS funds only around 40% of the care a hospice provides.
If you don’t live in the UK, you may be surprised to learn how people are accessing/unable to access palliative, hospice/end-of-life care. Charities can’t meet the rapidly growing needs.
On the 24th of April, the House of Lords “ran out of time” debating the assisted dying bill. A frustrating outcome after passing the House of Commons debates, given the importance of the subject, and especially given the current state of adult social care and hospice care in the UK.1
I recommend reading this article by Dr Rachel Clarke 2 “As a palliative care specialist, I’ve witnessed the human tragedy of our end-of-life care crisis. While the government debates assisted dying, palliative care is an afterthought. And many more people face death without the care and support they need.” (Thanks, Dr Rachel Molloy)
I wondered “How other countries have designed and implemented assisted dying”, I found this report by the Nuffield Trust (9 May 2025). It’s an analysis of assisted dying policies across 15 jurisdictions in 9 countries, highlighting practical and operational differences in implementation and the evolution of these systems.3 For example, MAID in Canada (a defined national process and eligibility route).
A few days before the bill was debated, Marie Curie, the leading end-of-life charity in the UK, revealed these disturbing statistics from its recent research4:
“Every three minutes, someone dies without proper support – nearly 200,000 people each year. And as the population grows older, the need for palliative care is rising fast. By 2050, that number could exceed a quarter of a million. It is a crisis hiding in plain sight.” TCS London Marathon: Marie Curie’s “Daffodil Runner” highlights the scale of the end-of-life care crisis
The research funded by Marie Curie goes on to say that almost 1 in 3 people don’t get the palliative and end-of-life care and support they need, with gaps even wider in disadvantaged communities. (How our research exposed the UK’s unmet need for palliative care, 16th February, 2026)
Hospice UK5 a charity representing the hospice sector, which includes Marie Curie, is also warning that hospices are “on the brink”, with many cutting or considering cutting frontline services as costs surge and demand rises.
Hospices in England provide care for 270,000 people each year – sometimes in inpatient units, but more often, in people’s homes. The holistic care they provide includes highly specialist palliative and end of life care. Hospices also support tens of thousands of families and loved ones each year, including with bereavement support.
The majority of this care is funded by charity – marathon runs, gifts in wills, and charity shops. In fact, in England, on average, the NHS only funds around 40% of the care that a hospice provides. (Fair funding for hospices)
Recommendation: Investigate what palliative and end-of-life care is available in your local area, for you and your extended family/friends. Click here
Hospice staff from across England gathered in Westminster on 15th April (2026) to demand urgent action on funding, as services are cut and pressures reach breaking point. [From the Hospice UK Website, Press Release]
The intervention comes as nearly 60% of hospices in England have already made, or are planning, cuts to frontline services this year. Financial pressures have forced many to make valued staff redundant, while 380 hospice beds lie unused, primarily because hospices cannot afford the staff to run them. At the same time, specialist community visits have fallen by 150,000 in a year, despite rising demand.
At the same time hospice costs are rising steeply. They spent £1.2bn on staff costs in 2024, but will spend over £1.4bn on them in 2026/27.6
Hospices are increasingly being left to plug widening funding gaps through charitable fundraising - an approach that is simply unsustainable. Hospice leaders warn that without urgent support, more services will be lost, and more people will miss out on vital end of life care.
Charlie King, Director of External Affairs at Hospice UK, said: “On 15th April, hospice staff from across the country will come together in Westminster to send a clear message to Government: the current funding model is failing, and patients are paying the price. (April 15 Press Release)
“The Government’s commitment to a Modern Service Framework for palliative and end of life care is welcome, and the sector stands ready to help deliver it. But many hospices cannot wait. They need urgent, sustainable funding now to prevent further cuts.
“We’re calling on the Government to act now by implementing Hospice UK’s four-point plan for fair funding, including fully funding the specialist palliative care we provide. A commitment of £112.5 million in additional recurring revenue funding would be a vital first step, preventing further devastating cuts and enabling hospices to continue delivering the care that patients and families rely on.”
Read the letter delivered to Downing Street, signed by over 25 hospices.
April 27, Hospice UK released this video. Please share this
Nearly six in ten hospices have made or are considering cuts to frontline services this year. This means more pressure on an already creaking NHS, it means people dying in corridors, people dying without pain relief or privacy.
This cannot continue. Hospices want to be there for everyone who needs their care and support. Read more about “Why do we need fair funding for hospices?”
With the possible introduction of assisted dying in future, we have to ask ourselves whether it’s fair for the state to fund an assisted dying service, while essential care for the dying relies on second-hand clothes sales. While Hospice UK remains neutral on the principle of assisted dying, we are clear that no one should feel they need to choose an assisted death because of a fear of not getting the care they need at end of life. Well-funded hospice care is a critical safeguard if assisted dying is introduced. That’s why, we are calling for fair funding for hospices.—Hospice UK
At the end of the day, literally and figuratively, there is an onus on unpaid carers, family and friends.
For palliative and end of life care, this can also mean a relentless coordination at the worst possible time—scrambling for care that is unavailable, delayed, or fragmented across providers. Read the story of Kirsty Parsons and her husband, Jim: ‘My husband finally got full-time care – he died a week later’ 28 April, 2026)
It’s no wonder that the number of unpaid carers is growing.7 The need to care for our loved ones can push more people to leave work. It’s not hard to imagine how the lack of reliable care support can contribute to a negative impact on the economy and declining health of the population, as more of the working population become carers.
In fact The Health Foundation published this report, “Healthy life expectancy trends in the UK: a watershed moment” on 26 April, 2026. [By Andrew Mooney, Anne Alarilla, Francesca Cavallaro.]
Bottom Line:
Care support is not an easy push-button available service. I recommend exploring what’s available in terms of routine care and palliative, end-of-life care, in the calm times before a crisis occurs.
Be aware of what equates to hospice care in your area and start clarifying your wishes, and those of your loved ones now.
Identify recommendations for good care agencies and self-employed care aides, from friends and contacts.
Manage your expectations. It’s hard to find trained nurse support. However, you don’t always need someone with that level of training. Experienced health care assistants are just as good, especially when they’re calm, empathetic and as lovely as the one we had the night my Dad took his last breath.
You can find more comprehensive resources and information at the Carers UK website: “Arranging Care and Support for Someone”
Question:
Have you organised care support or hospice care for someone in the UK? What did you learn from the experience?
Please like ‘❤️’ the article to guide others here.
The assisted dying bill has fallen after running out of time in the House of Lords, meaning it will not become law in this parliamentary session. (24 April 2026)
“Amid the failure of an attempt to bring in new laws allowing assisted dying for terminally ill people with less than six months to live, campaigners on both sides of the debate vented their anger and frustration with the opposing side.
Its supporters, including terminally ill people, blamed the failure of the bill, which passed in the House of Commons, on sabotage by a handful of unelected peers.” (‘Not democratic’: opponents and backers of assisted dying bill remain divided.)
Even after unprecedented scrutiny, opponents and backers remain deeply divided. Supporters argue that the bill carried a democratic mandate and that the Lords’ blockage cannot equate to the conclusion of such a consequential debate. (My assisted dying bill has a democratic mandate – the Lords who blocked it today do not.)
Humanists UK’s Chief Executive Andrew Copson said:
‘The actions of a small group of unelected peers on this Bill have been deplorable. It’s a stain on our democracy and a slap in the face to hundreds of terminally ill people and their families, who were given hope when MPs voted in favour last year.
‘The elected chamber must bring back this Bill. Dying people want choice and compassion at the end of their lives. The status quo leaves people dying in pain with three awful options: fly to Switzerland, refuse food and treatment, or suffer. Those options are unacceptable.’
Rachel Clarke is a palliative care doctor and the author of Breathtaking: Inside the NHS in a Time of Pandemic
You can read more about “How other countries have designed and implemented assisted dying” here in a report by the Nuffield Trust (9 May 2025). “This in-depth analysis offers evidence from a wide range of contexts to further inform the debate. What can the UK learn from other countries that have legalised assisted dying? This long read explores assisted dying policies across 15 jurisdictions in 9 countries, highlighting practical and operational differences in implementation, and how these systems have evolved.”
Marie Curie, Measuring unmet need for palliative care, 2026 https://www.mariecurie.org.uk/document/unmet-need-in-uk-report-2026
Marie Curie, How many people need palliative care? Updated estimates of palliative care need across the UK, 2017-2021, 2023. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2023/how-many-people-need-palliative-care.pdf
Hospice UK is the national charity supporting over 200 hospices and end-of-life care providers, championing high-quality care for those with terminal illnesses, their families, and the bereaved. It represents the hospice sector, providing funding, training, and policy influence to ensure access to palliative care. Mission: To fight for hospice care for all who need it, now and forever, ensuring personalized care for terminal and life-limiting conditions
*Hospice UK calculation using Hospice Accounts reports.
Carers UK Key Facts and Figures. Centre for Care research found that over the period 2010-2020, every year 4.3 million people became unpaid carers in the UK. According to the Census 2021, the biggest proportion of people caring in England and Wales are from the 55-59 age group.