Fast track continuing healthcare: care paid for within days

The words on the form matter more than anything else on this page. If a clinician writes that your relative has a rapidly deteriorating condition which may be entering a terminal phase, and sets out why, the National Framework treats that as enough on its own to establish eligibility. There is no Checklist, no Decision Support Tool, and no panel waiting to meet. The integrated care board, the NHS body holding the budget in your area, has to accept a properly completed form and arrange the funding and the care without delay.

Where somebody is looked after at home, the funding covers all of the care and support needed to meet the health and care needs that have been assessed. Where they are in a care home, the NHS contracts with the home and pays the full fees for accommodation, board and care. NHS Continuing Healthcare explains the longer assessment route, what does fully funded care mean? covers the difference between NHS funding and a council contribution, and end of life care at home sets out what care at home involves at this stage.

Two other points are worth carrying into the conversation. The form can be used in any setting, including where your relative is already at home or in a care home and wants to stay there. It can also be used in anticipation, where somebody has few symptoms now but the condition means a rapid change is expected, so the arrangements are agreed before they are needed. The clinician is also meant to explain, gently, that the care will be reviewed later and the funding may change after that review, which is not a warning that the money will be taken away.

1. 1

   Ask the person who knows the illness best

   Today

   The GP, the hospital consultant, the district nurse, a specialist palliative care nurse, or a doctor or nurse from the hospice. Any of them can be the appropriate clinician if they are responsible for your relative's care.
2. 2

   Say what has changed, with dates

   In the conversation

   Weight lost since the summer, a swallow that has got worse, pain that is not settling, somebody who was walking to the kitchen in June and is now in bed. The form is written from the pattern of change, so dates are the useful part.
3. 3

   Ask for the Fast Track Pathway Tool by name

   If the answer is vague

   If the reply is that a referral has been made, ask which form is being completed and by whom. Nurses and social workers who are not appropriate clinicians can still raise it with the person who is.
4. 4

   Say where your relative wants to be

   Before the package is agreed

   The framework says wishes about how and where care is delivered should be documented and taken into account. If they want to be at home, say so early. Palliative care, end of life care and hospice at home explains who else is involved.
5. 5

   Ask who your contact at the board will be

   Once the form has gone

   Ask for a name and a number for the continuing healthcare team, and what happens next. One person to ring saves a week of being passed between the surgery, the ward and the board.

Anyone supporting your relative can raise it even if they cannot sign it. The framework says that people who are not appropriate clinicians, including those working for charities, should contact the clinician responsible for the diagnosis, care or treatment and ask for the form to be considered.

Two benefits are worth claiming alongside the funding, and neither is means-tested. Attendance Allowance has special rules for people nearing the end of life: a clinician completes an SR1 form, the test is whether they would not be surprised if the person were to live less than 12 months, there is no face-to-face assessment, and the higher rate of £114.60 a week is paid. Somebody else can make the claim on your relative's behalf. If you are doing at least 35 hours of caring a week yourself, Carer's Allowance is £86.45 a week, subject to a weekly earnings limit of £204. Attendance Allowance explained and Carer's Allowance explained cover both claims.

If you decide to arrange care yourself rather than wait, you can search for carers near you and compare their rates by postcode, look at their experience and reviews, and message the ones you want to speak to. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency, and an hourly arrangement can be ended on 48 hours' notice. Night care at end of life covers what the nights involve.

A personal health budget is NHS money, planned and agreed between your family and the board, spent on the care in the plan. Anybody eligible for continuing healthcare has had the right to have one since October 2014, and Age UK says it is expected where somebody chooses to have their care at home, unless there are clear clinical or financial reasons against it. It can be held three ways: the board keeps the money and you choose who delivers the care, an organisation holds it for you, or it comes to you as a direct payment. Ask early, because it is harder to change once an agency has been booked. Personal health budgets on the NHS England site explains how they work.

PrimeCarers is an introductory service rather than an agency or a care provider, and it holds no CQC registration. Carers on the site are self-employed, set their own rates, and agree the visits with you directly. Before a carer appears, their identity and right to work are checked, an enhanced DBS on the Update Service is checked, and they have had an online interview. Qualifications, training and references are not checked by us: 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.

Two parts of the contract between a client and a carer matter more at this stage than at any other. 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 when somebody may be admitted at short notice. Ending the arrangement takes 48 hours' notice for hourly visits, and seven days for live-in care once 168 hours have been worked, 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 it, and travel is chargeable only where you have agreed it in advance in writing.

Live-in care covers a carer in the house day and night, private palliative carers covers what to look for in somebody's experience at this stage, and current rates lists what each type of visit costs.

If funding has been granted and the board later proposes to change it, the framework is firm about the order things happen in. Nobody identified through this route should have the funding removed without their eligibility being reconsidered through a Decision Support Tool completed by a multidisciplinary team. You have to be told in writing about any proposed change, with the reasons and your right to ask for a review. Where your relative is not expected to be at this stage for long, the framework says the board should continue to take responsibility for the care package.

If you disagree with a decision, the first step is the board's own local resolution process, which starts with a discussion and can move to a formal meeting. If that does not settle it, you can apply to NHS England for an independent review. Age UK factsheet 20 goes through both stages and lists the organisations giving free advice, and the NHS guide to continuing healthcare is the shorter version.

Two charities are worth knowing about meanwhile. Marie Curie gives information and support to people with a terminal illness and their families. Hospice UK is the national charity for hospice care, and its site finds the hospices near you.