NHS continuing healthcare
The information on this page will help people living with a terminal illness and their carers find out how to apply for continuing healthcare. It will also tell you what to do if your application is unsuccessful.
If your needs are urgent, you may be given continuing healthcare on a fast track. This means you don’t have to do the full assessment. The medical team uses an assessment called the Fast Track Pathway Tool instead. Your needs are considered urgent when your life could be in danger if you don't get help quickly. The NHS medical team will prioritise your care above others with less immediate needs.
There is currently no guiding framework for continuing healthcare in Northern Ireland, which makes getting a continuing healthcare assessment there particularly challenging. It’s unlikely to be offered or mentioned by your local health and social care team, but it’s definitely available – so be sure to ask for it if you think you’re eligible. You can find your local health and social care trust online or contact Age NI for more information.
Care home fees, including:
- accommodation costs
- healthcare costs
- personal care costs
If you need care at home, it covers:
- personal costs
- healthcare costs
It might also cover the cost of healthcare assistants.
Personal care means anything relating to hygiene, food, emotional wellbeing, mobility or simple treatments like applying lotions or eye drops.
Healthcare is any care that needs to be provided by a healthcare professional like a nurse or doctor.
Anyone in England, Scotland, Wales or Northern Ireland who mainly has a healthcare need. This means that the care you need is more about medical care than social care. These needs can either be at home, in a hospice or in a care home. You can apply for continuing healthcare if you:
- have a complex medical condition
- need substantial and ongoing care
Who isn’t eligible?
Anyone who doesn’t have primary healthcare needs. If you have social care needs there are several health-related benefits you can apply for instead. These include a care and support needs assessment, Personal Independence Payment, Disability Living Allowance and Attendance Allowance. But unlike continuing healthcare, they may not cover the full cost of your care.
The difference between healthcare needs and social care needs isn’t that clearly defined and there is some overlap between the two. It’s always worth asking different health and social care professionals if you’re unsure about your eligibility.
What isn’t covered by continuing healthcare?
The following costs aren’t covered:
- rent and mortgage payments
- some general household support, if your local council is already providing care
The rules for continuing healthcare are complicated - even doctors and nurses don't always understand them. It's always worth applying if you meet the criteria, and questioning the final decision if you don't agree with it. It’s also a good idea to get support from someone who understands how the system currently works, as the rules change quite often.
Contact your local Citizens Advice or one of the organisations listed at the end of this page if you need any help with the process.
Step 1: arranging an initial assessment
If you think you have primary healthcare needs, you’ll need to arrange an initial assessment through:
- your district nurse, doctor or another healthcare professional
- your local council
- a hospital social worker
- your Marie Curie Nurse or hospice staff
You can ask your carer or another person you trust to be with you. First you’ll be asked some questions to decide whether you should have a full assessment or not. This is sometimes called an initial screening, and is based on a checklist known as the NHS continuing healthcare checklist.
Step 2: initial assessment
This will usually be done by a nurse, doctor, social worker or another qualified healthcare professional. When they visit, they’ll ask you questions about:
- Behaviour – do you ever do things that put you or the people who care for you at risk?
- Cognition (understanding) – do you have any problems with your memory or understanding?
- Communication – are you able to ask people for what you need and tell them when you need help?
- Psychological and emotional needs – do you ever get feelings of anxiety or low mood?
- Mobility – do you need help to move around your home? Are you at risk of falling?
- Nutrition (food and drink) – do you need help to feed yourself? Do you find it hard to maintain your weight?
- Continence – do you have any difficulty going to the toilet?
- Skin (including wounds and ulcers) – do you have any wounds that need regular care or are at risk of infection?
- Breathing – do you ever have breathing difficulties that need assistance from a health professional?
- Symptom control through drug therapies – do you have any difficultly managing symptoms due to medication? Do any of your medications need to be given by a nurse?
They might also talk to your other members of your healthcare team. They’ll fill in the checklist, putting the answers to the questions above into one of the following three categories:
- No or low needs
- Moderate needs
- High needs
If you have at least two responses in the high needs category, or five or more in the moderate needs category, you’ll probably qualify for a full assessment. You’ll get a letter about this. You can also ask for a copy of the checklist for your records.
If you’re refused a full assessment
Decisions about how to spend NHS money are made by local clinical commissioning groups (England) or health boards (Wales and Scotland). If you’re refused healthcare based on your initial screening, you have a right to ask your local clinical commissioning group or health board (see step 3) for a full assessment. These groups will decide whether or not you qualify.
Step 3: full assessment
If you qualify for the full assessment, you’ll be visited by a health worker and possibly a social worker or another member of the assessment team. They may visit more than once, at your home or somewhere else that’s convenient.
After getting your consent (permission), they will talk to other people involved in your care and look at your medical records and notes. It's a good idea to put all your medical notes and documents in one place, so you can find them quickly during the assessment. They will ask you some more questions about your needs, and put these in a form called the decision support tool.
Depending on where you live, the decision support tool may be filled out at a meeting with several health and social care professionals. You (and/or your carer, if you have one) will be invited to this. There might also be a social services assessment carried out at the same time.
Give them your feedback
The health worker will tell you what they’ve written in the form based on what they’ve seen and heard. If you disagree, they’ll add your comments to the form. You can also ask them any questions.
Step 4: making a decision
The health worker will take the decision support tool to your local clinical commissioning group or health board. These groups decide how NHS money is spent in your area. The group members will review all the information and make a decision about whether to provide you with continuing healthcare support within 28 days.
If your application for continuing healthcare is approved
You’ll be given someone to work with you to create a care plan. This person is called a care manager, case manager or community nurse.
A care plan is a detailed package of care that should meet all your health and social care needs. It’s different to any plan that your nurse or doctor might have made, but should include that information. Your needs will be reviewed every three months to check you should still be getting continuing healthcare.
In Scotland, recent changes to the health and social care systems may have an impact on continuing healthcare. Speak to a member of your health or social care team about this.
If you’re refused continuing healthcare
You’ll still be entitled to free healthcare from the NHS or local health and social care trust. If you need to pay nursing home fees, there may still be a contribution to these based on the nursing assessment section of the decision support tool.
If you’re refused continuing healthcare and you think the decision is unfair, you have a right to appeal. The clinical commissioning group or health board will look at the information again to make sure they’re considering all the evidence. If you’re still refused, you might want to consider making a complaint.
Sometimes the NHS might refuse continuing healthcare but agree that it will split the cost of your care with social services at the local council (in England, Scotland and Wales). This is called joint funding. In Northern Ireland health and social care services are provided together.
If the clinical commissioning group or health board refuse to make any contribution, the local council will assess your care needs. This is called a community care assessment or needs assessment. If you’re eligible for any social care services, the council will look at your finances to see how much you would need to pay towards your care. This is based on how much you can afford and is called means-testing.
Step 5: getting the money
Continuing healthcare should cover all your health and social care needs, not just healthcare. If you’re already getting help with your social care needs from social services, your social care package will be moved into your continuing healthcare package. There are two main ways of getting the money.
Option 1: a personal health budget
You can ask for your continuing healthcare funds to be paid through a personal health budget. A personal health budget is when the NHS tells you how much is available for your care needs and you work together to decide how it’s spent. Personal budgets mean you can make decisions and manage your care the way you want, rather than having your health needs directly met by the NHS team.This is called self-directed support in Scotland.
Personal budgets can be paid in three ways:
- The NHS looks after the money and you tell them how you want to spend it. This is referred to as ‘notional budget’.
- The NHS tells you how much money is available but an organisation (like a charity or support group) looks after the money for you. It helps you decide how to spend it. This method is called ‘real budget held by a third party’.
- Direct payments for healthcare. This is when you look after the money and plan how to spend it on your health and social care.
If you take a personal budget, you’ll need to create a care and support plan that is approved by the NHS care team. Your plan must establish your needs, your health and wellbeing goals. This plan will be reviewed on a regular basis to consider any changes in your health needs. You’ll need to explain in the plan how you will use your budget to purchase a range of services to remain safe and healthy.
Option 2: decisions are made by the clinical commissioning group or health board
The clinical commissioning group or health board will decide how to spend the money based on your assessment. This could be by providing services at home or in a nursing or care home.
If you would like to stay at a nursing or care home which is more expensive, but your needs could be met in a cheaper residential home, the group might suggest this.
If you’re already paying care home fees, but you haven’t received continuing healthcare funding, you can ask for these costs to be taken into account. This is called a historical (retrospective) assessment. You can ask your local health board or clinical commissioning group to review its decision if you think they should have included previous costs in their assessment. In England, some of your care home fees could be refunded.
If the clinical commissioning group or health board takes longer than 28 days to make a decision, you can claim back any care costs between the 29th day and the date of its decision.
If you’re already getting help with your social care needs from social services, your social care package will be moved into your continuing healthcare package.
If you’re living at home, your benefits will stay the same.
If you’re living in a care home, Attendance Allowance, Disability Living Allowance and Personal Independence Payment will normally stop after 28 days. You’ll also stop receiving these benefits if:
- the care home provides care from medically-trained staff
- you could be described as receiving similar care to an inpatient at a hospital
They won’t stop, however, if you’re:
- terminally ill and residing in a hospice (not an NHS hospital)
- paying your own care home fees (called a self-funder), which means you don’t get any funding from the local council
- are only getting social care funding on an interim basis and will be paying it back in full. This is also called being a retrospective self-funder
If you’re refused continuing healthcare, you can read our information about how to complain to the NHS or local health and social care trust.
- Read our information about getting social care services.
- Find out more about benefits for people who are living with a terminal illness.
- If you’ve been approved for continuing healthcare in a care home and are already getting Attendance Allowance, Personal Independence Payment or Disability Living Allowance, call the Disability Benefits Helpline on 08457 123 456 to find out how you’ll be affected.
Your health worker will fill in an NHS continuing healthcare checklist and a Decision support tool for NHS continuing healthcare when doing the assessment. They can be downloaded from the GOV.uk site.
This content is provided for general information purposes only. It's not medical, financial, legal or personal advice. We suggest that you consult with a qualified professional about your individual circumstances. How our information is created and how it's used.
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