How Hospice Referral and Assessment Work in the UK

If a doctor or nurse has mentioned hospice care, you are probably wondering what happens next, who decides, and what the hospice will want to know. In the US this is often called a "hospice evaluation". It is tied to the US Medicare hospice benefit, which needs doctors to certify that someone has a life expectancy of 6 months or less. The UK works differently. There is no Medicare-style certification. Instead, someone refers you to a hospice, and the hospice team assesses your needs to work out how it can help. This guide explains how hospice referral and assessment work in the UK.

Key points

"Hospice evaluation" is a US term. In the UK, people talk about a hospice referral and an assessment of needs.
Referrals usually come from a GP, hospital doctor or district nurse. Some hospices accept self-referrals.
After a referral, the hospice usually contacts you, then may arrange a more detailed assessment at the hospice or at home.
The assessment covers your illness, symptoms and current care, and your emotional, social and spiritual needs.
There is no six-month rule in the UK. Hospice care can start at any stage of a terminal illness.
Hospice care is free. It is paid for through NHS funding and public donation.

Who refers someone to a hospice?

Hospice UK says your GP or hospital doctor would usually refer you for hospice care. A district nurse may also refer you to a community palliative care nurse or a hospice at home service.

Some hospices take self-referrals, from the person or from family with their consent. The NHS says you can contact a hospice directly, but the team will usually also ask for a referral from your doctor or nurse.

For Marie Curie's hospice care at home, a district nurse, community nurse, specialist nurse or GP arranges the care. Marie Curie does not take bookings directly, so that all the care you get is coordinated.

If you are not in touch with any services, start with the GP. Part of their job is to help you understand what is available locally. You can also find local hospices with the Hospice UK hospice care finder.

Who can be referred?

Hospice care is for people with a terminal illness, or a long-term condition that cannot be cured. Conditions where it may help include cancer, dementia, heart, liver and kidney failure, lung conditions such as COPD, neurological conditions such as motor neurone disease, and frailty.

Some US guides quote a "six months to live" rule. That is a Medicare rule, not an NHS one. The NHS says hospices care for people from the point their illness is diagnosed as terminal to the end of their life, however long that may be. For more on this, see how to qualify for hospice care in the UK.

What happens after a referral?

Each hospice has its own process, but the steps are often similar. As one example, Heart of Kent Hospice describes three steps:

First contact. A member of the team contacts the patient as soon as possible to discuss their needs and the support on offer. They ask about the illness, symptoms and current care.
A more detailed assessment. After that call, the hospice may arrange a fuller assessment, either at the hospice or at home. This helps the team understand the person's needs and agree the best support.
Getting the right support. The hospice works out which of its services can help and puts the person in touch with the right teams.

For hospice care at home through Marie Curie, the district nurse, community nurse, specialist nurse or GP assesses the person's care needs first. They then contact Marie Curie to arrange visits.

What does the hospice assessment cover?

Hospice care looks after the whole person, not just the illness. The NHS says it aims to meet a person's medical, emotional, social, practical, psychological and spiritual needs, and the needs of their family and carers. So the assessment is likely to cover:

The illness and current care. The diagnosis, treatment so far, medicines, and who is already involved.
Symptoms. Pain, breathlessness and other symptoms, and how well they are controlled.
Daily life. What the person can do and where they need help. An occupational therapist may assess what equipment or home adaptations would help.
Home and family. Who is caring for the person, and what support the family needs.
Feelings, beliefs and wishes. What matters most to the person, including where they would like to be cared for.
Practical matters. Hospice social workers can help check which benefits the person can get.

The NHS says good end of life care should be tailored to the person. It helps if their wishes are written down as a personalised care plan, which is reviewed regularly as things change.

This is your chance to ask questions too. Hospice staff are usually happy to explain what the hospice offers, or show you around.

What role do family and carers play?

You often know the day-to-day reality best. Families usually help by:

filling in gaps in the medical or personal history
sharing the person's wishes, if they are too unwell to speak for themselves
being honest about what you can and cannot manage as a carer
asking questions until you understand the plan

If you look after someone, you can also ask the council for a carer's assessment. It is free and separate from the person's own needs assessment.

If the person may lose the ability to make decisions, check whether a lasting power of attorney for health and welfare is in place. It is best to sort this out early, not in a crisis.

Palliative care and hospice care: what is the difference?

	Palliative care	Hospice care
What it is	Care that makes someone with an illness that cannot be cured as comfortable as possible, with support for them and their family	A style of palliative care, which also includes end of life care, provided by a hospice team
When it starts	When you first learn you have a life-limiting illness	Any time after diagnosis with a terminal illness
Alongside treatment?	Yes, you may still be having other treatment	Ask the hospice. Care can stop and start as your condition changes
Who provides it	GPs, community nurses and specialist palliative care teams	Hospices, hospice at home teams and charities such as Marie Curie
Where	Home, hospital, care home or hospice	Home, care home, as a day patient, or as an inpatient at the hospice

How is hospice care paid for?

Hospice care is free for patients, their carers and family. It is paid for through a mix of NHS funding and public donation.

NHS Continuing Healthcare fast track. If someone has a rapidly deteriorating condition that may be entering a terminal phase, a registered doctor or nurse who knows them can complete a fast-track form. This can include clinicians at hospices. The NHS then funds their care in full, and care should usually be in place within 48 hours. See our guide to fast-track Continuing Healthcare.
Attendance Allowance. People over State Pension age who may have 12 months or less to live can claim under the special rules for end of life, at the higher rate. See GOV.UK.
Pension Credit. This gives extra money to people over State Pension age on a low income. See GOV.UK.

In England, the Care Quality Commission (CQC) inspects hospices and rates them Outstanding, Good, Requires improvement or Inadequate. You can read a hospice's latest report on the CQC website.

This guide covers England. Rules on paying for care are different in Scotland, Wales and Northern Ireland.

Getting the home ready

If the person will be cared for at home, the team will guide you. It helps to think about:

A room for care. Ideally private, with space for a bed and for carers to move around.
Safety. Clear trip hazards and check lighting on stairs and landings.
Equipment. Occupational therapists can assess what is needed and arrange delivery. The council must provide some equipment and adaptations free if they cost less than £1,000, such as grab rails and stair handrails.

Read more about end of life care at home.

Who is on the hospice team?

Hospice doctors are specialists in palliative care. They usually oversee care and prescribe medicines.
Nurses work in the hospice and visit people at home. They give hands-on care and medicines and monitor symptoms. Admiral Nurses are trained to support people with dementia.
Healthcare assistants help with medicines, wound dressings and equipment such as catheters, in the hospice or at home.
Occupational therapists and physiotherapists help with equipment, adaptations and staying active.
Social workers help with practical matters, such as benefits and paperwork.
Chaplains offer spiritual support, whether you have a particular faith or none.
Bereavement counsellors support family members after a death.

Talking to your loved one about hospice care

There is rarely a single right moment. Pick a calm, private time. Start with reassurance. Hospice care is about comfort and support, not giving up. Explain what it can offer, such as pain relief, symptom control and emotional support. Let the person ask questions and take their time. The conversation can happen more than once.

If you are also weighing up NHS nursing at home against paid carers, see NHS community health care vs home care. For more help, see our end of life care guides.

Frequently asked questions

What is a hospice evaluation?

It is a US term. It is linked to the US Medicare hospice benefit, which needs doctors to certify a life expectancy of 6 months or less. The UK has no equivalent certification. Instead, a GP, hospital doctor or district nurse refers the person, and the hospice team assesses their needs to plan the right support.

How do I get a hospice referral in the UK?

Ask the person's GP, district nurse or hospital consultant. Some hospices accept self-referrals, but they will usually want to talk to the person's doctor.

Is there a time limit on hospice care in the UK?

No. There is no six-month rule. Hospices care for people from diagnosis of a terminal illness to the end of life, however long that may be. People can take a break from hospice care and come back.

Where does the hospice assessment take place?

Often it starts with a phone call. A fuller assessment may then take place at the hospice or at home, depending on the hospice.

What if there is no hospice bed?

Hospice places are limited. You may be offered day sessions, or put on a waiting list. Some care homes also have palliative care beds. Ask your GP or district nurse about other local services.

Who pays for hospice care in the UK?

Hospice care is free, paid for through NHS funding and public donation. NHS Continuing Healthcare fast-track funding can pay for care at home or in a care home for people nearing the end of life.

Sources

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