The cost of end-of-life care at home, and who pays

The top half of the table is NHS care, which is free. The bottom half is personal care and company: help getting washed, being turned in bed, someone awake in the night. That is social care, and in England social care is means-tested unless the NHS takes it on.

So the first question to ask is whether the NHS will take it on, through fast track continuing healthcare. If it is agreed, the NHS pays for the personal care as well, and what is left for the family is mostly the ordinary household bills. If it is not, or while you wait, the council and the benefits system can each pay part, and the family pays for the rest.

For the wider picture of what happens at home, the guide to end-of-life care at home explains who visits, what to expect and how to plan, and the end of life care section gathers every guide on this stage in one place.

What each hospice offers varies from one area to the next. You can contact a hospice yourself, though the NHS says the team will usually also ask for a referral from your relative's doctor or nurse. The NHS says hospices can also offer respite care, financial guidance and bereavement support. Hospice care explained goes through what to ask, and who is in the team sets out what each professional does. The NHS page on hospice care links to the Hospice UK finder for hospices near you.

Two charities are worth knowing about. Marie Curie gives information and support to people with a terminal illness and their families. Macmillan Cancer Support has information on money and benefits for people with cancer. Ask the GP or district nurse what is available where you live.

Fast track is the short route into NHS continuing healthcare, for somebody whose condition is deteriorating quickly and who may be entering a terminal phase. The GP, the district nurse, the hospital consultant or a hospice doctor or nurse can complete the form, and there is no assessment panel. If it is agreed, the NHS pays for the care, and nobody can be asked to pay towards it. Fast track continuing healthcare covers how to ask, what the form needs to show, and what to do if it is refused.

If fast track is not agreed, the council is the next place to go. A care needs assessment looks at what your relative needs, and a separate financial assessment decides what they pay. For care at home the value of the house they live in is left out, which is different from the rules for a care home. Direct payments explains how to take the council's share as money and use it for carers you choose, and personal budgets and personal health budgets covers the NHS equivalent. For every route in one place, see help paying for care.

The form behind all of this is the SR1. Only a medical professional can complete it, usually the GP, a consultant or a specialist nurse, and they will normally send it to the Department for Work and Pensions for you. Ask for it in the same conversation as fast track.

Which benefit to claim depends on your relative's age. Over State Pension age it is Attendance Allowance, which you can apply for online or by post, and gov.uk says you will be contacted within 3 weeks. Somebody else can make the claim for them, and gov.uk says that person does not need their permission. Under State Pension age it is PIP, claimed by phone, and somebody can call on your relative's behalf as long as your relative is with them during the call. Disability Living Allowance is now only for children under 16. An adult who already gets DLA, PIP or Attendance Allowance should report a change of circumstances and send an SR1, rather than start a new claim.

These benefits are not means-tested, and the money can be spent on anything, including care. If the council is charging for care, it can count them as income, but the guidance says it must let your relative keep enough to pay for disability-related costs, such as care they have arranged privately. If you are doing most of the caring yourself, Carer's Allowance may be payable once your relative receives one of these benefits. The gov.uk page on benefits if you're nearing the end of life lists each one.

This is one arrangement among many, and if the nights are the hardest part, they may be the place to start. Carers on PrimeCarers charge £18 to £25 an hour for visits, £130 to £145 for a night where the carer sleeps in the house and is woken if needed, and £150 to £160 for a night where the carer stays awake. All of these include our fee. Agencies charge £28 to £35 an hour for the same visit.

Once the hours reach about 35 a week, a carer who lives in costs about the same as visits. Live-in care on PrimeCarers starts at £1,050 a week, and the typical week is £1,120. Where the care is more complex, live-in rates start at £1,260. A live-in carer needs their own sleep, so if your relative needs someone awake most nights, plan for a waking night carer as well. Live-in care at the end of life explains how that works, and night care at the end of life covers sleeping and waking nights.

When you are ready to look, you can search for carers near you and compare their rates. Each carer sets their own rate, and it is shown on their profile before you speak to them. For figures based on where your relative lives, the care cost calculator works out a week from your own hours, and our pricing lists every rate in one place.

1. 1

   Ask a doctor or nurse about fast track and the SR1

   First

   Ask the GP, the district nurse or the hospice team whether fast track is appropriate, and who will complete the form. The same person can complete the SR1 for the special rules, and one SR1 covers every benefit.
2. 2

   Ask the council for two assessments

   Free, runs alongside

   A care needs assessment for your relative, worth having if fast track is not agreed, and a carer's assessment for you, which looks at what you need to keep going.
3. 3

   Agree the hours, the rate and travel in writing

   Before the first visit

   Bank holidays are charged at one and a half times the carer's rate, and Christmas Day at twice. Mileage and travel time are chargeable only if you agree them in advance, in writing.
4. 4

   Talk about a hospital admission and notice

   Before the first visit

   A visit you cancel is payable in full, except for unplanned hospitalisation, illness or another reason the carer agrees. Notice is 48 hours for hourly care, and for live-in care 7 days once 168 hours have been worked, with 48 hours before that.

PrimeCarers is an introductory service, not an agency or a care provider, and it holds no CQC registration. Carers on the site are self-employed. Your family chooses the carer, meets them, and agrees the hours and the rate with them directly. Before a carer appears on the site, their identity and right to work are checked, they have an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and they are interviewed online. For visits booked through PrimeCarers, carers are insured while they work, through their own policy or cover we arrange where they have none, subject to the policy terms.

We do not check qualifications, training or references, and there is no way to search for palliative care experience. What a carer says about their experience is their own account on their profile, so talk it through with them before you book. What a carer does at this stage sets out what a carer can and cannot do alongside the nurses.

The client contract has no clause about the death of the person being cared for. Visits still booked, and any notice, are for your family and the carer to settle under its usual terms, and PrimeCarers charges nothing itself when an arrangement ends. The first days after a death at home covers this and the other practical things that follow. If the cost of all this is weighing on you as well as the caring, looking after yourself at the end is written for you.