Who is in the team, and where a private carer fits

The NHS lists hospital doctors and nurses, the GP, community nurses, hospice staff and counsellors among the people who may be involved, along with social care staff, chaplains of all faiths or none, physiotherapists, occupational therapists and complementary therapists. Which of them you get depends on the illness and on what your area has. Where somebody is cared for at home, the GP has overall responsibility for their care.

Two of those names cause more confusion than the rest. Marie Curie is a charity whose nurses and healthcare assistants give hands-on care in people's homes, and it says what its team provides varies between areas, so ask a district nurse or GP what runs near you. Macmillan nurses are specialist nurses in cancer care working in hospitals, hospices and the community, and Macmillan says specialist palliative care nurses do not usually give hands-on physical nursing in the way district nurses do. If a hospital has said it will get Macmillan involved, that is advice and support arriving, and it does not mean somebody will be in the house helping your mother wash. What palliative care, end of life care and hospice at home each mean sorts out the three words, and end of life care at home is the guide this page sits under.

If nights are the worry, night care at the end of life sets out what is available free before anybody pays for anything. If money is the worry, the fast track pathway can put a funded care package in place quickly, NHS continuing healthcare explains the assessment behind it, and local authority funding explains the means test.

Write them on one sheet and tape it inside a kitchen cupboard door: the GP surgery, the district nursing team, the out of hours number, the palliative care team, and the mobile number of whoever is doing the care that week. Everybody in the house then has the same list.

A carer at this stage does the washing and dressing, keeps the mouth clean and comfortable, helps with meals and drinks for as long as they are wanted, sees that medication is taken on time, turns somebody every few hours so the skin stays intact, and sits with them in the evening. They are not nurses and they do not replace the district nursing team. They are the person who is present, which makes them the one who notices the change that leads to the phone call. What a carer does in the final weeks goes through the day, and private palliative carers covers what to look for in somebody's experience.

When you are ready, you can search for carers near you and compare their rates by postcode, read their experience and reviews, and message the ones you would like to speak to. Which arrangement suits depends mostly on the nights: overnight care covers a carer sleeping in the house or awake through the night, live-in care covers a carer there day and night, and our pricing lists what each type of visit costs.

PrimeCarers is an introductory service rather than an agency or a care provider, and it holds no CQC registration. Carers are self-employed, set their own rates, and agree the visits with you directly. Before a carer appears we check their identity, their right to work and an enhanced DBS on the Update Service, and every carer has had an online interview with us. We do not check qualifications, training or references: references sit on a carer's profile, and skills and training are for you to go through with the carer. Carers hold insurance that covers them while they work.

Three parts of the agreement between a client and a carer matter more at this stage than at any other, and they are set out in the client contract. A visit cancelled by the client is payable in full, apart from unplanned hospitalisation, illness, or another reason the carer agrees to, which is worth knowing where somebody may be admitted at short notice. Either party can end the arrangement on 48 hours' notice for hourly care, and on seven days for live-in care once the carer has been present for 168 hours in total, with 48 hours before that point. Bank holidays are charged at one and a half times the carer's rate and Christmas Day at twice, and travel is chargeable only where you and the carer agreed it in advance in writing. PrimeCarers charges nothing itself to cancel, and does not set the terms between a client and a carer.

1. 1

   Ring the GP surgery and say what has changed

   Today

   The NHS says your first step is to speak to the GP, and that they can help you understand which services are available locally. Describe what is happening rather than naming a service: pain that is not controlled, no appetite, breathlessness.
2. 2

   Ask whether the district nursing team is involved yet

   Free

   The GP can arrange community nurses to come to the house and give nursing care there. Ask who the local team is and whether they can be rung directly. This is the team you will speak to most.
3. 3

   Ask for a referral to the community palliative care team

   Free

   Specialist palliative care nurses visit at home to advise on pain and symptom control, can provide or arrange hands-on nursing and personal care where it is needed, and support the family. A district nurse can refer as well.
4. 4

   Ask what the hospice covers where you live

   Free

   Ask the GP or district nurse what your local hospice provides in the house, and how long the wait is. A hospice team will usually want a referral from a doctor or nurse.
5. 5

   Ask about the fast track pathway if things are changing quickly

   Usually 48 hours

   The NHS says that where somebody’s health is deteriorating quickly and they are nearing the end of their life, they should be considered for the continuing healthcare fast track pathway, so a care package can be put in place as soon as possible, usually within 48 hours. A family cannot fill the form in, and can ask the GP to consider it.
6. 6

   Arrange the hours nobody else is covering

   This week

   Once you know what the NHS and the hospice are doing, the gaps are visible: the mornings, the evenings, the nights, the weekends. Book a carer for the ones you cannot cover, starting with the part of the day you dread most.

Hospice UK runs a directory of adult and children's hospices you can search by postcode.

Ask for two things for yourself as well. A carer's assessment from the council looks at your own needs rather than your relative's, and it is free. Carer's Allowance may be payable where you care for at least 35 hours a week, and Attendance Allowance is not means-tested and has special rules for people nearing the end of life.