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Continuing care FAQs

These frequently asked questions (FAQs) relate to NHS continuing healthcare for adults. If you care for a child or young person under 18, see Continuing care for children.

How can the person I care for get an assessment for NHS continuing healthcare?

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There are situations when someone should automatically be assessed for NHS continuing healthcare. See NHS continuing healthcare for more information.

An initial checklist assessment should also be done if you or the person you look after ask for one. You can ask for one by talking to a health or social care professional working with the person you care for, or by contacting the NHS continuing healthcare coordinator at the Clinical Commissioning Group (CCG).

What support is available for carers of people getting NHS continuing healthcare?

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Government guidance says that when someone gets NHS continuing healthcare in their own home, and support from a carer is an integral part of their care plan, their CCG should consider providing one or both of the following:

  • training to help the carer carry out their caring role
  • extra support for the person they look after so the carer can get a break

If support for you is not included in a care plan, you could ask the CCG for a review that takes your needs as a carer into account.

All carers who provide regular and substantial care can also ask for a carer’s assessment from their local authority. This can be a route to getting other types of support to help you as a carer, such as help with household tasks or benefits advice. You may also be able to get a direct payment to pay for something that you’ve identified will help you continue in your caring role.

The person I care for has been awarded NHS continuing healthcare. How much choice will they get about their care package?

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Government guidance says that CCGs should use an individual’s preferences as a starting point when agreeing their care package and the setting where it will be provided. The CCG can take the cost and value for money of different options into account, but they must also consider other factors, such as a person’s desire to live in a family environment.

If you disagree with what the CCG intends to provide, you will need to use the NHS complaints procedure. It may help your case if you can show that the proposed care package doesn’t meet the assessed needs of the person you look after.

The person I look after has a local authority care package that works well. They have now been awarded NHS continuing healthcare and I’m concerned that their care package will change.

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If someone is eligible for NHS continuing healthcare, they may have medical needs that can’t be met by their existing care package. There are also some aspects of local authority care packages that aren’t currently available through all CCGs, such as direct payments to enable people to organise their own support.

If the person you look after is concerned about changes to their care package because of a move to NHS continuing healthcare, their CCG should talk to them about ways that it can give them as much choice and control as possible. This could include the use of a personal health budget. Find out more about choice in the NHS and personal health budgets.

In some regions, direct payments for NHS continuing healthcare are being piloted. Your CCG should be able to tell you if these are available in your area, and how they work.

If you’re still not satisfied, you may want to complain.

Can someone refuse an assessment for NHS continuing healthcare? If they do refuse, will they be able to get services from their local authority instead?

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An assessment for NHS continuing healthcare can’t be carried out without someone’s consent, so it is possible to refuse. However, if they do refuse, there is no guarantee that they will be able to get community care services from their local authority instead.

Government guidance says that, in this situation, the local authority doesn’t necessarily have any additional responsibility to meet the person’s needs, and they can decide not to provide services. This could happen if someone has medical needs, as local authorities are not legally allowed to provide medical care.

If your local authority does decide that they can no longer provide services, they should give you reasonable notice and clear reasons for their decision. You can ask the local authority to review its decision or complain.

If the person you care for refuses to be assessed for NHS continuing healthcare, the CCG should explore their reasons for refusing, and try to resolve the situation. If there’s a concern about their ability to make decisions because of their mental capacity, the Mental Capacity Act will apply.

The person I look after is in a care home and has been awarded NHS continuing healthcare. The CCG says the fees charged by this care home are more than they would usually pay, and has proposed a move to a different one. I think a move will have a negative effect on the person I look after. What can we do?

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Guidance states that in this situation the CCG should consider if there are reasons why they should pay for the existing care package. If you can show that someone’s needs mean that a move could involve significant risk to their health and wellbeing, the CCG should consider funding their existing care home place.

If the CCG decides to arrange an alternative placement, you should get a reasonable choice of providers. The CCG should put a transition care plan in place, and keep in touch with you and the care home to make sure the move has worked well.

Is it possible to pay top-up fees for NHS continuing healthcare?

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Government guidance says that patients should never be allowed to pay towards NHS services, so it’s not possible to top up NHS continuing healthcare care packages as you can with local authority care packages.

The only way that NHS continuing healthcare packages can be topped up privately is if you pay for additional private services on top of the services you get from the NHS. These private services should be provided by different staff and preferably in a different setting.

Does NHS continuing healthcare have any effect on benefits?

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Most benefits aren’t affected by NHS continuing healthcare, but if the person you look after gets this in a care home, they will stop being eligible for some disability benefits.

If the person you care for gets Attendance Allowance (AA) or Disability Living Allowance (DLA), and they are awarded NHS continuing healthcare in a care home, their benefits may be affected. If the care home provides care from medically trained staff or qualified nurses, and the resident can be described as receiving medical treatment like an inpatient in a hospital or similar institution, then their benefit will stop on the 29th day after the NHS begins to fund their care, or sooner if they have recently been in hospital.
 
If their care isn’t provided by qualified nursing or medical staff and they can't be described as being like an inpatient in a hospital or similar institution then their DLA should not automatically stop. 
 
However, if they are getting DLA and have a Motability agreement, the higher rate of their DLA mobility component will continue to be paid to Motability’s service providers.

If the person you care for gets AA or DLA, and also gets a means-tested benefit such as Income Support or Pension Credit, their means-tested benefit may include an extra amount called a disability premium, or severe disability premium. If their AA or DLA stops, they’ll no longer get any disability-related premiums. This could mean they’ll get less means-tested benefit, or that they no longer qualify for any.

People getting AA or DLA who go into a care home or hospital that is funded by NHS continuing healthcare must notify the Attendance Allowance Unit or Disability Living Allowance Unit by calling 08457 123456.

If the person you care for gets NHS continuing healthcare in their own home, they will still be able to claim AA or DLA as long as they meet the eligibility criteria for these benefits.

Where can I get help with disputes?

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The Patient Advice and Liaison Service (PALS) at your CCG should also be able to put you in touch with them. Find out more about NHS complaints procedures.

Other sources of support could include a local carers centre, advocacy organisation, law centre or disability rights organisation. You can find help in your area by searching our online directory, or talk to one of our advisors.

Where can I find more information about NHS continuing care?

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The Department of Health has produced a booklet called NHS continuing healthcare and NHS-funded nursing care for people who may need NHS continuing care, and their families and carers.

Some charities have downloadable resources about NHS continuing healthcare, such as the Alzheimer’s Society’s booklet: When does the NHS pay for care? (PDF, 191kb) and Age UK’s factsheet: NHS continuing healthcare and NHS-funded nursing care.

There’s also government guidance to help health and social care professionals make decisions about eligibility for NHS continuing healthcare. The National Framework for NHS Continuing Healthcare and NHS-funded nursing care aims to give guidance about the type of healthcare needs that will qualify, and to ensure that decisions are made consistently across the country.

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Page last reviewed: 21/03/2013

Next review due: 21/03/2015

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