End of life care at home Worthing guide: hospice support, funding and what to expect

Many people want to die at home, surrounded by familiar things and the people they love. With the right support this is possible for many families. Good end of life care at home usually brings together the GP and district nurses, the St Barnabas House hospice teams, paid carers if needed, and family.

Arranging care in London? Read our London guide: Hospice at home vs private end-of-life care.

Arranging care in London? Read our guide: Palliative care at home in London: costs and NHS funding.

This guide to end of life care at home Worthing families can call on explains what support is available locally, how to get NHS funding quickly through the Continuing Healthcare Fast Track, what the last days of life can look like, and what to do when someone dies at home. It is written for families in Worthing, Adur and the surrounding area.

In short: ask the GP to refer to St Barnabas House, ask about a CHC Fast Track assessment for care costs, and make sure you know who to call day and night.

End of life care at home Worthing: who provides it?

Care is usually shared between several services. Knowing who does what helps you know who to call.

For a fuller picture of the difference between palliative care and care in the final weeks, see our guides to palliative care at home, end of life care at home and palliative versus end of life care.

St Barnabas hospice at home in Worthing

St Barnabas House is the local hospice, and all its care is free. It supports people at home through three services.

Community palliative care team

Nurses and doctors who work alongside GPs and other professionals. They give advice on managing symptoms, emotional support, and help with planning future care and wishes. How often they are in touch depends on need.

Hospice at Home

Trained nurses and healthcare assistants provide short-term, hands-on care at home, with priority for people in the final days of life. They work with the specialist nurses, palliative care doctors and GPs.

Echo end of life care hub

Echo is a 24-hour, seven-day telephone support service for end of life care. It offers advice on changes in symptoms, equipment, practical support and bereavement. The number is 01903 254789, option 3.

Coverage and referrals

St Barnabas House covers Worthing, Lancing, Shoreham, Littlehampton, Henfield, Steyning, Partridge Green and Storrington. It accepts referrals only from healthcare professionals, so start by speaking to the GP, consultant or district nurse. The hospice aims to contact people within ten working days of referral, and within two days if care is needed urgently. Full details are on the St Barnabas House care at home page.

The hospice also has an in-patient unit and bereavement support for families.

Funding: NHS Continuing Healthcare Fast Track

If your relative has a rapidly deteriorating condition and may be entering the terminal phase, a clinician can complete the Fast Track Pathway Tool so that NHS Continuing Healthcare funds their care. It is not means-tested, and there is no need for the full assessment first.

An “appropriate clinician”, such as a doctor or nurse who knows your relative’s needs, completes the tool. NHS Surrey and Sussex should then respond promptly so a suitable care package is in place, preferably within 48 hours. The package can pay for carers at home, including night care or live-in care.

Ask the GP, district nurse, hospital team or hospice nurse about it directly. Families sometimes assume it happens automatically, and it does not always. Our guide to NHS Continuing Healthcare at home explains more.

Benefits: people who may have 12 months or less to live can claim Attendance Allowance (or PIP if under State Pension age) under special rules. For Attendance Allowance this means the higher rate of £114.60 a week in 2026/27, with no qualifying period, supported by an SR1 form from a doctor or nurse. Our free funding checker can help you see what else may apply.

Signs of the last days of life

Every death is different, and not everyone shows all of these changes. The hospice team, district nurses or GP can explain what is happening and whether anything can make your relative more comfortable. Hospice UK describes these common changes:

• Eating and drinking less. The body’s need for food and drink reduces. Offering sips, ice chips or a moist mouth sponge can ease a dry mouth.
• Sleeping more. People are often drowsy even when awake and may drift in and out of consciousness. They may still hear you, so keep talking gently and holding their hand.
• Changes in breathing. Breathing may become shallow, with pauses. A rattling sound can happen when fluid collects in the throat or chest. It does not usually mean they are in distress, and changing position or medication may help.
• Restlessness or confusion. Some people become restless or may not recognise familiar faces. Stay calm and speak clearly rather than correcting them.
• Skin changes. Hands, feet, ears and nose may feel cold, and skin may look mottled. This is not usually painful.
• Loss of bladder and bowel control. Pads or a catheter can keep them comfortable and preserve dignity.

Hospice UK’s guide to the last few days of life goes into more detail. If something worries you, call Echo, the district nurses or NHS 111.

Practical and emotional support

• Ask about anticipatory medicines. GPs often prescribe “just in case” medicines to keep at home, so nurses can treat pain, sickness, agitation or breathlessness quickly.
• Get equipment early. A hospital bed, pressure-relieving mattress or commode can take time to arrive.
• Keep a list of numbers by the phone: the GP, district nurses, Echo, NHS 111 and the home care agency.
• Talk about wishes. If your relative is able, talk about where they want to be, who they want there, and any treatment they would not want. Ask the GP about recording these plans.
• Look after yourself. Take breaks, accept offers of help, and use sitting or night care so you can sleep. Our guide to carer support in Worthing lists local help, and the Marie Curie Support Line offers free information and emotional support.

What to do when someone dies at home

If the death was expected, there is no need to call 999 or rush. You can take some time to sit with them.

1. Call the GP surgery, or NHS 111 out of hours, or the hospice or district nursing team if they are involved. A doctor or nurse will come to verify the death.
2. Contact a funeral director when you are ready. They can collect your relative at any time of day or night.
3. The cause of death is confirmed. A doctor completes the medical certificate and a medical examiner reviews it. The medical examiner’s team will usually contact the next of kin.
4. Register the death within five days of getting confirmation, at the register office.
5. Use Tell Us Once to tell government departments at the same time. See the GOV.UK guide to what to do after someone dies.

If a death is sudden or unexpected, call 999.

Frequently asked questions

Can I refer my relative to St Barnabas House myself?

No. St Barnabas House only accepts referrals from healthcare professionals such as a GP, consultant or nurse. Speak to your relative’s GP or district nurse and ask them to make the referral.

Is hospice at home care free?

Yes. St Barnabas House provides all its care free of charge. It is an independent charity funded mainly by donations. Paid carers arranged through NHS Continuing Healthcare Fast Track are also free to the family.

How long does CHC Fast Track take?

Once a clinician completes the Fast Track Pathway Tool, NHS Surrey and Sussex should respond promptly, with care in place preferably within 48 hours. In practice, finding carers can take longer, so ask early.

Can someone with dementia die at home?

Yes, with the right support. Hospice teams, district nurses and experienced carers can support people with dementia at the end of life. Our guide to dementia care at home may help.

What if we can no longer manage at home?

Plans can change. Talk to the GP or hospice team about options, which may include more carers, a stay in the St Barnabas House in-patient unit if a bed is available, or a nursing home.

The Care Panel is an independent publication. We are not a care provider and are not regulated by the Care Quality Commission, because we do not deliver care. Always check a provider’s own CQC registration and inspection report before you commit.

Written and fact-checked by The Care Panel. Last updated September 2026. Sources: St Barnabas House, Hospice UK, Age UK factsheet on NHS Continuing Healthcare, Age UK guidance on what to do when someone dies, GOV.UK guidance after a death, Marie Curie. General information, not financial, legal or medical advice — figures are indicative and subject to change.

Reviewed by The Care Panel team on 24 September 2026. This guide is general information about care in England, not legal, medical or financial advice. Rules and rates change; check with your council or an adviser before making decisions.