Receiving a terminal diagnosis is a deeply emotional and difficult experience. Alongside the physical and emotional challenges, there are also practical concerns—one of the most important being how to pay for palliative care. Palliative care focuses on improving the quality of life for individuals with terminal illnesses, providing essential support for managing pain, emotional well-being, and other aspects of daily living.
This short guide explains the various funding options available for palliative and end-of-life care. From NHS coverage to charitable support and private funding options, we’ll explore how patients and families can access the care they need, ensuring comfort and dignity during this crucial time.
What is palliative care?
Palliative care is a holistic approach designed to improve the quality of life for individuals with a terminal illness. Unlike curative treatments that focus on eradicating illness, palliative care aims to alleviate symptoms, reduce suffering, and support both the physical and emotional needs of the patient. This care can begin as soon as a terminal diagnosis is made and can continue for as long as needed, providing comfort and support throughout the illness.
Palliative care vs. end-of-life care
While palliative care can last for years, end-of-life care specifically addresses the needs of individuals in the final stages of life, typically when a person is in the last year of their life. End-of-life care may be more specialised and intense, focusing on ensuring comfort as death approaches.
Palliative care involves pain management, emotional support, help with daily activities such as eating and bathing, and guidance through legal matters like writing a will or appointing a Power of Attorney. It also includes spiritual support and therapy to help the patient and their loved ones cope during this challenging time.
Who provides palliative care?
Palliative care can be provided by various healthcare professionals, including doctors, specialist nurses, social workers, and therapists, working in hospitals, care homes, hospices, or through home care services.
Where can you get palliative care?
Palliative care can be provided in a variety of settings depending on the needs of the patient, their preferences, and the available services:
- Home care: Many patients choose to receive palliative care in the comfort of their own home. Home care providers can help manage pain, assist with daily activities, and offer emotional support, all while ensuring the patient remains in a familiar and supportive environment. Home-based palliative care also allows loved ones to be involved in the patient’s care, which can be comforting during this time.
- Hospice care: Hospices provide a specialised environment for patients who are nearing the end of life. They focus on comfort, pain relief, and emotional support. While often associated with death, hospices offer a calm, welcoming atmosphere designed to make patients feel at ease. Hospice care can be provided in inpatient facilities, or hospice staff may visit patients at home to provide support and assist with symptom management.
- Care homes and nursing homes: For patients who require round-the-clock care but prefer a home-like setting, care homes or nursing homes can provide palliative care. These facilities offer medical care and daily support, such as assistance with hygiene and mobility, while also addressing emotional and psychological needs. Some care homes specialise in palliative and end-of-life care.
- Hospitals: In some cases, patients may need to receive palliative care in a hospital, particularly if they have complex medical needs that require specialised treatment. Hospitals can provide immediate symptom relief and offer necessary interventions, but palliative care in a hospital setting is typically more focused on acute symptom management.
Regardless of the setting, the goal of palliative care remains the same: to ensure comfort, dignity, and the highest possible quality of life as the patient navigates their illness.
Is palliative care and end-of-life care free?
One of the main concerns for individuals and families seeking palliative or end-of-life care is understanding the costs involved and determining what is covered by the government, charities, or private funding. Thankfully, there are several options available to ensure that the cost of palliative care does not become an additional burden during such a challenging time.
- Free palliative care: Palliative care can be provided free of charge in certain circumstances. These include:
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- NHS hospitals: Palliative care provided in NHS hospitals is typically free of charge as part of the NHS’s universal health coverage.
- Care homes or home care funded by Local Authorities: If a patient is eligible for local authority funding, they may receive palliative care at home or in a care home without additional cost. This social care funding may cover the cost of home care services, personal care, and medical support.
- Hospices and hospice care at home: Hospices often provide palliative care free of charge, though funding typically comes from a combination of government support and charitable donations. Hospice services can also be provided at home, depending on the patient’s needs and preferences.
- Government and charitable funding: Many hospices rely on a combination of statutory (government) funding and charitable donations to provide free care to patients. For example, Sue Ryder hospices receive about one-third of their funding from the government, while the remainder is raised through charity efforts.
When you may have to pay for palliative care
While many aspects of palliative care are free, there are situations where individuals may need to contribute financially, particularly when they are self-funding their care.
- Self-funding for care homes: If a patient moves into a care home and chooses to pay for their care themselves (i.e., they are not eligible for funding from the local authority), they will be responsible for the costs of their palliative care. Similarly, those who opt for private care at home or require more specialised services may need to self-fund care.
- Costs of private home care: Private home care can be more expensive, particularly if the patient requires specialist palliative care services at home. Costs depend on the level of care required, the region, and the provider chosen.
- Factors affecting cost: The cost of care varies depending on the type of care home or home care provider, the patient’s needs, and location within the UK. Specialist care is typically more expensive, and patients in some areas may face higher costs than others.
What funding is available for palliative care?
Several funding options are available to help cover the costs of palliative care for those with terminal illnesses. These options range from government-funded programs to private funding, offering financial assistance for patients and their families.
NHS continuing healthcare fast track pathway
One of the primary funding options for those with terminal illnesses is NHS Continuing Healthcare, which can fully fund palliative care. For individuals whose condition is rapidly deteriorating, this is often provided through the Fast Track Pathway, which ensures that terminally ill patients receive quick and appropriate care.
- Eligibility criteria: To qualify for NHS continuing healthcare, individuals must demonstrate that their care needs are primarily health-related. This funding can be fast-tracked if the person’s condition is terminal, allowing them to access care more swiftly without waiting for a full assessment.
- How to apply: In most cases, eligibility for NHS continuing healthcare is determined through an assessment conducted by a multidisciplinary team. However, for patients with a terminal diagnosis, a fast-tracked decision can be made by an “appropriate clinician,” such as a doctor responsible for the patient’s care.
Personal health budgets (England)
For patients eligible for NHS continuing healthcare, there is the option of receiving a Personal Health Budget in England. This funding option allows patients to have more control over their care, enabling them to choose how and where they receive palliative care.
- Flexibility and control: A Personal Health Budget gives patients the ability to tailor their care plan to their needs, whether they choose to receive care at home or in a hospice. This flexibility ensures that care is aligned with the patient’s preferences and provides more choice in the services they receive.
- How it works: Patients and their families can work with healthcare providers to create a care plan that fits their needs. This allows for more personalised care while still being fully funded by the NHS.
Hospital-based complex clinical care (Scotland)
In Scotland, patients with complex care needs may be eligible for Hospital-Based Complex Clinical Care (HBCCC). This is for individuals whose condition requires hospital or specialist unit care, and it is funded entirely by the NHS.
- Eligibility and assessment: To qualify for HBCCC, the patient must need ongoing hospital-based care. An assessment is required to determine if the patient’s needs can only be met in a hospital setting. Patients will be reassessed every three months to determine if they still require this level of care, and if deemed ineligible, they can appeal the decision.
- Specialist centres: HBCCC is provided in dedicated centres, and patients may receive care in one of these facilities based on their health needs.
Special rules for end-of-life benefits
For individuals who are terminally ill, there are special rules that apply to certain benefits, which can help alleviate financial concerns and support the patient’s care needs. These benefits can be fast-tracked for those with a prognosis of less than a year to live.
- Benefits included: The following benefits can be fast-tracked under the special rules for terminal illness:
- Universal Credit
- Employment and Support Allowance (ESA)
- Attendance Allowance
- Personal Independence Payment (PIP)
- Disability Living Allowance
- Carer’s Allowance
- How it works: Under the special rules, the claim process for these benefits is expedited, and patients are often eligible to receive the full amount. This can help cover the costs associated with palliative care and other necessary services.
Disabled facilities grant and home adaptations
If a patient requires adaptations to their home to accommodate their health needs, they may be eligible for a Disabled Facilities Grant (DFG). This grant is available to help fund home modifications that ensure comfort and accessibility for individuals with terminal illnesses.
- Eligible home adaptations: Common adaptations include the installation of ramps, handrails, wider doorways, and bathroom modifications to improve accessibility and safety.
- How to apply: The application process involves a home assessment by a local authority occupational therapist or physiotherapist, who will determine the necessary changes. The grant is available in England, Wales, and Northern Ireland, while Scotland offers a similar scheme called the Scheme of Assistance.
How to apply for palliative care funding
To access the funding options mentioned above, it’s important to initiate the application process as early as possible. Speaking with your GP, the doctor managing your care, or a healthcare professional involved in palliative care will help ensure the right steps are taken.
- NHS continuing healthcare: For NHS continuing healthcare, a full assessment process is required to determine eligibility. Patients who qualify can apply for the Fast Track Pathway to receive immediate support.
- Benefits: To apply for benefits under the special rules for terminal illness, patients should contact their GP or healthcare provider to start the fast-track claim process.
- Disabled facilities grant: Home adaptations can be applied for through local authorities. A free home assessment will be provided to assess eligibility for the grant.
Compassionate palliative care at home
At Prestige Nursing & Care, we offer personalised palliative care and support designed to allow you to live a meaningful life in the comfort of your own home. Our team will work closely with you and your family to create a tailored care plan that reflects your specific needs, ensuring you have control over your care and decisions.
Our experienced carers provide practical support with daily living, medication, pain management, and more, while also addressing emotional, social, and spiritual needs. We collaborate with local authorities, NHS services, and other healthcare professionals to ensure seamless care, adapting to changing needs along the way.
If you or a loved one requires palliative care at home, we are here to support you every step of the way with compassion and respect.
Get in touch today
For 80 years, Prestige Nursing & Care has been trusted by our clients and their families to provide competent and compassionate home care. Our care is focused on improving health and overall well-being, and all in the place people love most – their own homes.
Call us on 0808 239 1525 and our friendly care experts will discuss your care and support needs. You can also fill out our online enquiry form or email info@prestige-nursing.co.uk. We provide impartial guidance and advice so you can make the right choice for you and your family.
