Voices and Choices, Chesham Bucks.

NHS Continuing Healthcare

[Produced for Voices & Choices August 2017] 

In England, Wales and Northern Ireland, if you have a disability or complex medical problem, you might qualify for free NHS continuing healthcare (CHC). Not many people know about it, so it’s important to get an assessment and find out if you’re eligible. There’s no clear-cut list of health conditions or illnesses that qualify for funding and most people with long-term care needs don’t qualify for NHS continuing healthcare because the assessment is quite strict. Being frail, for example, isn’t enough. But don’t let that put you off.

Free healthcare could be worth thousands of pounds each year, so it’s important to find out where you stand.

  • What is NHS continuing healthcare?
  • Who is eligible?
  • Where is it provided?
  • The impact on state benefits
  • How to appeal
  • NHS funded nursing care

What is NHS continuing healthcare?

NHS continuing healthcare is a package of care arranged and funded solely by the NHS. If you have ongoing healthcare needs, and are not in hospital, or are due to be discharged from hospital, you may be assessed as having a ‘primary health need’ and therefore be eligible for NHS Continuing Healthcare. If you qualify, you will have all your care paid for by the NHS no matter what your income or savings are.

NHS continuing healthcare is free, unlike support provided by local authorities for which a financial charge may be made depending on your income and savings. If you are found to be eligible for NHS continuing healthcare in your own home, this means that the NHS will pay for healthcare (e.g. services from a community nurse or specialist therapist) and associated social care needs (e.g. personal care and domestic tasks, help with bathing, dressing, food preparation and shopping). In a care home, the NHS also pays for your care home fees, including board and accommodation.

In England, the NHS can arrange care for you or you can choose to receive funding for your care as a direct payment, known as a personal health budget.

A personal health budget gives you more choice and control over how you plan and pay for your healthcare and wellbeing needs. 

When should I be considered for NHS continuing healthcare?

If you have ongoing health needs, there are times when NHS staff should consider whether you may be eligible.

These include:

  • when you are ready to be discharged from hospital and your long-term needs are clear
  • once a period of intermediate care or rehabilitation following a hospital stay have finished and it’s agreed your condition is unlikely to improve
  • whenever your health or social care needs are being reviewed as part of a community care assessment
  • if your physical or mental health deteriorates significantly and your current level of care seems inadequate
  • when your nursing needs are being reviewed; this should happen annually if you live in a nursing home
  • if you have a rapidly deteriorating condition and may be approaching the end of your life

In these circumstances, your discharge staff, staff co-ordinating your intermediate care, GP or a member of the social work team should raise the issue of NHS continuing healthcare and assess your eligibility. If they don’t, make sure you ask for an assessment.

Primary health need

There is no legal definition of ‘primary health need’. Someone could be considered to have a ‘primary health need’ if they require:

  • specialist care that goes above general nursing care you might receive in your own home or in a nursing home
  • a substantial amount of care that is more than what a council could be expected to arrange and fund
  • a combination of the above

What costs are covered?

NHS continuing healthcare covers personal care and healthcare costs, such as paying for specialist therapy or help with bathing or dressing. It might also include accommodation if your care is provided in a care home, or support for carers if you’re being looked after at home.

If you don’t qualify for NHS continuing care, and you need care in a nursing-home, you might get NHS funded nursing care which is a non-means tested contribution towards your nursing costs.

Funding varies by region, so you’ll need to check with your local Clinical Commissioning Group (CCG), Health Board or Health and Social Care Trust to see what’s covered. Go to NHS Choices to find your local Clinical Commissioning Group.

Changing from a local authority support package to NHS continuing healthcare

If you are concerned about changes to your care package because of a move to NHS continuing healthcare, your CCG should talk to you about ways that it can give you as much choice and control as possible. This could include the use of a personal health budget, with one option being a ‘direct payment for healthcare’.

Personal Health Budgets

A personal health budget is an amount of money to support your health and wellbeing needs, which is planned and agreed between you (or someone who represents you), and your local NHS team. It is not new money, but it may mean spending money differently so that you can get the care that you need.

A personal health budget allows you to manage your healthcare and support such as treatments, equipment and personal care, in a way that suits you. It works in a similar way to personal budgets, which allow people to manage and pay for their social care needs.

Together with your NHS team, you will develop a care plan. The plan sets out your personal health and wellbeing needs, the health outcomes you want to achieve, the amount of money in the budget and how you are going to spend it.

A care co-ordinator should be identified in the planning process who will be your first point of contact in case you have any concerns. Once you have a personal health budget, your NHS team will periodically review your care plan with you. You can also ask your NHS team to review and update your plan because your health needs have changed or you feel the current plan isn’t working for you.

You can give up your personal health budget at any point if you wish to, you will still be able to receive care and support in another way.

If you already have a personal budget for care and support from a social care services and your NHS team agrees, you can also have a personal health budget and ask for both to be paid into the same account.

The discussion around your plan should include what to do if you disagree with something, or if something goes wrong. If you’re not sure what to do, first speak to your NHS team, but if you’re still not happy you can use the NHS complaints procedure.

If your request for a personal health budget is turned down, you should be told why. If you wish to appeal, your local CCG should explain what to do. If you’re still not happy you can use the NHS complaints procedure.

A personal health budget can be managed in three ways or a combination of these:

  • Notional budget – No money changes hands. You find out how much money is available for your assessed needs and together with your NHS team you decide on how to spend that money. They will then arrange the agreed care and support.
  • Third party budget – An organisation legally independent of both you and the NHS (for example, an independent user trust or a voluntary organisation) holds the money for you, pays for and arranges the care and support agreed in your care plan.
  • Direct payment for healthcare – You get the money to buy the care and support you and your NHS team agree you need. You must show what you have spent it on, but you, or your representative, buy and manage services yourself.

There are likely to be times when your healthcare needs will change and this may affect your budget too.

If you have underspent, your NHS team will discuss with you what happens to the money. It may be kept for your future healthcare needs, or returned to the CCG and allocated to other budget holders.

If you have overspent, contact your NHS team as soon as possible. No one with a personal health budget will be denied healthcare. If you feel you need additional support than is agreed in your care plan, then those arrangements should be reviewed. You can request a review of your needs and care plan at any time. If you have spent your budget in ways that have not been agreed with your NHS team, you may be asked to repay it. 

Who is eligible?

In October 2007, the Department of Health produced new guidance that sets out a system for deciding eligibility for NHS continuing healthcare. This is called the National framework for NHS continuing healthcare and NHS-funded nursing care. The Framework sets out the factors that are considered to decide whether someone meets the criteria for NHS continuing healthcare.

The Alzheimer’s Society campaigned for many years for national eligibility criteria for NHS continuing healthcare and therefore welcomed the introduction of the Framework. Since its introduction, the number of people receiving NHS continuing healthcare has increased from 27,822 at the end of September 2007 to around 59,000 at the end of March 2016. It is encouraging that more people are receiving NHS continuing healthcare but this figure fluctuates and it is important to note that it includes people with all types of illness including dementia.

To be eligible for NHS continuing healthcare you must be over 18 and have substantial and ongoing care needs. You must have been assessed as having a ‘primary health need’, which means that your main or primary need for care must relate to your health. Eligibility for NHS continuing healthcare does not depend on:

  • a specific health condition, illness or diagnosis
  • who provides the care, or
  • where the care is provided

If you have a disability or if you’ve been diagnosed with a long-term illness or condition, this doesn’t necessarily mean that you’ll be eligible for NHS continuing healthcare. As a guide, ‘eligible’ health needs might include:

  • Mobility problems
  • Terminal illnesses
  • Rapidly deteriorating health
  • Long-term medical conditions
  • Physical or mental disabilities
  • Behavioural or cognitive disorders
  • Complex medical conditions that need additional care and support

There are plenty of grey areas and you might have other conditions that mean you qualify. You might know people in similar circumstances who’ve been turned down, but the only sure way to know if you’re eligible is to ask your GP or social worker to arrange an assessment.

When assessing your eligibility for NHS continuing healthcare, staff must follow certain processes. You must be assessed by a team of healthcare professionals as having a ‘primary health need’ for care. This means that you need care primarily because of your health needs.

Eligibility is always based on these needs, rather than any particular diagnosis or condition.

NHS continuing healthcare is for adults. Children and young people may receive a ‘continuing care package’ if they have needs arising from disability, accident or illness that can’t be met by existing universal or specialist services alone. Find out more about the children and young people’s continuing care national framework

The assessment

To be eligible for NHS continuing healthcare, you must be assessed by a team of healthcare professionals (a ‘multi-disciplinary team’) as having a ‘primary health need’. Whether someone has a ‘primary health need’ is assessed by looking at all their care needs and relating them to the following four key indicators:

  • nature – this describes the characteristics and type of the individual’s needs and the overall effect these needs have on the individual, including the type of interventions required to manage those needs
  • complexity – this is about how the individual’s needs present and interact and the level of skill required to monitor the symptoms, treat the condition and/or manage the care
  • intensity – this is the extent and severity of the individual’s needs and the support needed to meet them, which includes the need for sustained/ongoing care
  • unpredictability – this is about how hard it is to predict changes in an individual’s needs that might create challenges in managing them, including the risks to the individual’s health if adequate and timely care is not provided

You’ll be given an assessment to work out whether any of these applies to you. A health professional will decide whether you qualify by looking at the nature, intensity, complexity and unpredictability of your health needs. You don’t need a specific health diagnosis (e.g. dementia), or to need a particular type of care (e.g. 24-hour care or nursing care), in order to qualify. The assessment for NHS continuing healthcare is separate from a discharge assessment or care needs assessment.

Clinical commissioning groups, known as CCGs (the NHS organisations that commission local health services), must assess you for NHS continuing healthcare if it seems that you may need it.

For most people, there is an initial checklist assessment, which is used to decide if you need a full assessment. However, if you need care urgently – for example, if your health, or the health of someone you care for, is getting worse rapidly, or if you’re terminally ill – your assessment may be fast-tracked. Ask about a fast track assessment to bypass the initial screening.

The whole of the decision-making process should be ‘person centred’. This means putting the individual and their views about their needs and the care and support required at the centre of the process. It also means making sure that the individual plays a full role in the assessment and decision making process and gets support to do this where needed. This could be by the individual asking a friend or relative to help them explain their views.

You should be fully involved in the assessment process and kept informed, and have your views about your needs and support taken into account. Carers and family members should also be consulted where appropriate. A decision about eligibility should usually be made within 28 days of it being decided that the person needs a full assessment for NHS continuing healthcare.

Ten tips on preparing your case for NHS continuing healthcare

The Alzheimer’s Society has produced these tips to help to get NHS continuing healthcare for people with dementia, but they should prove helpful for all applicants and their carers.

This checklist will also be useful to people who want to challenge decisions on NHS continuing healthcare.

  1. Create a medical history for the person you care for. Ideally this should be on one page, and should be regularly updated. This information may be useful, for example, when preparing for an appeal panel against a decision to refuse NHS continuing healthcare.
  2. Good record keeping is essential. Record the date, time, contact person and a brief summary of all conversations with staff from your clinical commissioning group, hospital, GP, care home, social services, etc. about the needs of the person you care for. This is important because sometimes the records kept by the various bodies involved in a person’s care can be inaccurate or inadequate. Also, a high level of staff turnover may contribute to lack of continuity in record keeping.
  3. Request medical records from various bodies involved in the care of the person, for example the hospital or the GP.
  4. When applying for or challenging a decision on NHS continuing healthcare it is often best to put your case in writing and keep all correspondence.
  5. File all the information you gather. For example, you might want to get a folder and file information under different headings, such as care home notes, nursing home notes, NHS continuing healthcare assessments, care plans, letters and your comments.
  6. Use the Department of Health National Framework for continuing care to do your own assessment of the person’s needs.
  7. Try to attend all assessments or appeal/review hearings, for example by the clinical commissioning group or independent review panel.
  8. Get people to support your case, such as your GP or MP.
  9. Be aware that the Parliamentary and Health Service Ombudsman is the final arbiter if you have exhausted the local complaints system. It is important to keep good records in order to make an effective case to the Ombudsman. The Ombudsman will decide whether to investigate the claim.
  10. If you think you have a strong case for continuing care, be persistent. It can be difficult and frustrating but many people with dementia have successfully secured NHS continuing healthcare funding.

Initial assessment

The initial checklist assessment can be completed by a nurse, doctor, other healthcare professional or social worker. You should be told that you’re being assessed, and be asked for your consent.

The purpose of the checklist is to enable anyone who might be eligible to have the opportunity for a full assessment. The professional(s) completing the checklist should record written reasons for their decision, and sign and date the checklist. You should be given a copy of the completed checklist.

Depending on the outcome of the checklist, you will either be told that you don’t meet the criteria for a full assessment of NHS continuing healthcare and are therefore not eligible, or you will be referred for a full assessment of eligibility. Being referred for a full assessment doesn’t necessarily mean that you will be eligible for NHS continuing healthcare.

Full assessment

Full assessments for NHS continuing healthcare are undertaken by a ‘multi-disciplinary’ team made up of a minimum of two health or care professionals who are already involved in your care. You should be informed who is co-ordinating the NHS continuing healthcare assessment.

The team’s assessment will consider your needs under the following headings:

  • behaviour
  • cognition (understanding)
  • communication
  • psychological/emotional needs
  • mobility
  • nutrition (food and drink)
  • continence
  • skin (including wounds and ulcers)
  • breathing
  • symptom control through drug therapies and medication
  • altered states of consciousness
  • other significant needs

These needs are then given a weighting marked ‘priority’, ‘severe’, ‘high’, ‘moderate’, ‘low’ or ‘no needs’.

The multi-disciplinary team will consider:

  • what help is needed
  • how complex these needs are
  • how intense or severe these needs can be
  • how unpredictable they are, including any risks to the person’s health if the right care isn’t provided at the right time

If you have at least one priority need, or severe needs in at least two areas, you should be eligible for NHS continuing healthcare. You may also be eligible if you have a severe need in one area plus a number of other needs, or a number of high or moderate needs, depending on their nature, intensity, complexity or unpredictability.

In all cases, the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided.

The assessment should take into account your views and the views of any carers you have. You should be given a copy of the decision documents, along with clear reasons for the decision.

If you aren’t eligible for NHS continuing healthcare, you can be referred to your local authority who can discuss with you whether you may be eligible for support from them. If you still have some health needs then the NHS may still pay for part of the package of support. This is sometimes known as a ‘joint package’ of care.

Fast track assessment

Many families are wrongly told that NHS continuing healthcare funding is only available for people who are at the end of their life. Not only is this incorrect, it often means that elderly people with significant health needs are wrongly denied the free NHS care they are entitled to in law.

Continuing care funding for care fees depends on the extent of your relative’s health needs, not what stage of your life they’re at. Assessments are supposed to be carried out swiftly, no matter what your relative’s degree of health needs. There is, however, a special assessment that should be used in emergency situations or when a person is in a period of rapid deterioration or when a person is in ‘terminal decline’ at the end of their life.

If someone’s condition is deteriorating quickly and/or they are nearing the end of their life, you can insist on them having an urgent continuing healthcare assessment, so that an appropriate care and support package can be put in place as soon as possible – usually within 48 hours. This is done using the NHS continuing healthcare fast track process (‘Fast track pathway tool for NHS continuing healthcare’). Essentially, it’s a fast assessment to get NHS funding in place as quickly as possible.

Here are some of the key points to keep in mind about this NHS continuing healthcare fast track process:

  • It is used if your relative has urgent health needs and/or nursing needs and is rapidly deteriorating and/or in a terminal phase of life. It is also used if your relative’s health is likely to deteriorate rapidly before the next routine continuing healthcare review. It is not only for people at end of life.
  • It allows a quick decision to be made about continuing healthcare funding. As part of this, it allows appropriate end of life support to be put in place quickly by the NHS – free of charge – and it means your relative can have care provided in their preferred location, including at home.
  • The fast track assessment should be carried out by a registered medical practitioner (the ‘assessor’), such as a GP, consultant, registered nurse, hospice clinician, etc – but this person must have detailed knowledge of your relative’s needs. Unfortunately, families report that GPs and other clinicians often have little (if any) knowledge of the continuing healthcare assessment process, and it can fall to the family to ‘educate’ them in this respect. This can be immensely frustrating for the family at a time when urgent action is required.
  • In the fast track assessment, the assessor makes the decision that the person is in a rapidly deteriorating state and/or in a terminal phase and with an increasing level of dependency. This decision should be accepted and acted upon immediately by the NHS.
  • There should be no delay in providing free NHS continuing healthcare funding just because NHS or local authority staff are arguing or debating how the fast track should be used.
  • Your relative should be moved to his/her preferred place of care and have funding immediately put in place without having to go through the long ‘full’ multidisciplinary team continuing healthcare assessment process. The NHS is responsible for this. If your relative is already in a care home, and no longer owns their own home, it may be that the care home will be the best place in which to remain.
  • Once fast track continuing healthcare funding is in place, it should never be removed without the NHS going through the proper review process, i.e. a full assessment process carried out by a multi-disciplinary team (MDT). This ‘full’ assessment process uses a form called the ‘Decision Support Tool’ (DST). Only once the fast track assessment is complete and funding is put in place should an MDT review process ever be started – and only if this MDT assessment is really necessary. This full MDT assessment process should never delay urgent fast track end-of-life funding and care.
  • If parts of the fast track form have not been completed, or if the assessor does not know how to complete it, or the patient cannot assist in completing it, this should never delay a decision about funding or delay NHS care being put in place.

Can someone refuse an assessment?

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, although they will still be entitled to an assessment by the local authority there is no guarantee that they will be provided with services. This is because there is a legal limit on the type of services that a local authority can provide.

If you refuse to be assessed for NHS continuing healthcare, the CCG should explore your reasons for refusing, and try to address your concerns. If someone lacks the mental capacity to consent to or refuse an assessment, the principles of the Mental Capacity Act will apply and in most circumstances an assessment will be provided in the person’s best interest.

Care and Support Package

If you are eligible for NHS continuing healthcare, the next stage is to arrange a care and support package which meets your assessed needs.

Depending on your situation, different options could be suitable, including support in your own home and the option of a personal health budget. If it is agreed that a care home is the best option for you, there could be more than one local care home that is suitable.

Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account.

If your relative is in a care home and has become eligible for NHS continuing healthcare, the CCG may say the fees charged by this care home are more than they would usually pay, and propose a move to a different care home. If there is evidence that a move is likely to have a significantly detrimental effect on your relative’s health or wellbeing, you should discuss this with the CCG who will take your concerns into account when considering the most appropriate arrangements. If the CCG decides to arrange an alternative placement, they should make efforts to provide a reasonable choice of homes.

It is not possible to top up NHS continuing healthcare packages, like 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.

Reviews

If your needs change then your eligibility for NHS continuing healthcare may change. If you are eligible for NHS continuing healthcare, your needs and support package should normally be reviewed within three months and thereafter at least annually.

This review will consider whether your existing care and support package meets your assessed needs. If your needs have changed, the review will also consider whether you are still eligible for NHS continuing healthcare.

Delays

CCGs should normally make a decision about eligibility for NHS continuing healthcare within 28 days of getting a completed checklist or request for a full assessment, unless there are circumstances beyond its control.

If the CCG decides that you are eligible, but takes longer than 28 days to decide this, and the delay is unjustifiable, they should refund any care costs from the 29th day until the date of their decision.

If your CCG decided that you weren’t eligible for NHS continuing healthcare, but then revised this decision after a dispute, it should refund your care costs for the period between their original decision and their revised decision.

What if you don’t qualify?

Even if you don’t qualify for NHS Continuing Care, you might still be eligible for other NHS services to support you including:

  • Palliative care
  • Respite health care
  • Rehabilitation and recovery, and
  • Community health services specialist support for healthcare needs

Alternatively, there might be local authority funding to meet some of your care needs.

If you are not eligible for NHS continuing healthcare, the CCG can refer you to your local authority who can discuss with you whether you may be eligible for support from them.

If you are not eligible for NHS continuing healthcare but still have some health needs then the NHS may still pay for part of the package of support. This is sometimes known as a ‘joint package’ of care. One way in which this is provided is through NHS-funded nursing care.

It can also be by the NHS providing other funding or services towards meeting your needs. Where the local authority is also part funding your care package then, depending upon your income and savings, you may have to pay a contribution towards the costs of their part of the care. There is no charge for the NHS part of a joint package of care.

Whether or not you are eligible for NHS continuing healthcare, you are still able to make use of all of the other services from the NHS in your area in the same way as any other NHS patient.

Applying for a retrospective NHS continuing healthcare assessment

The Department of Health introduced new deadlines for people who have never received an assessment and think they may be eligible for NHS continuing healthcare for periods of care occurring between 1 April 2004 and 31 March 2011. These people had to contact their CCG before 30 September 2012. The deadline for people who have never received an assessment and think they may be eligible between 1 April 2011 and 31 March 2012 was 31 March 2013.

These deadlines have now passed.  From 1 October 2012, only in exceptional circumstances can the local NHS take applications for NHS continuing healthcare for periods of care between 1 April 2004 and 31 March 2011.

If you believe your case may be exceptional, please contact the relevant CCG to find the staff member managing the process. You need to contact the CCG responsible for the area where the individual was living during the period you want to be considered.

Where is it provided?

Where a person’s primary need is a ‘health need’, the NHS is regarded as responsible for providing for and fully funding all their needs in any setting outside hospital, this could be in:

  • a hospice,
  • your own home – the NHS will pay for healthcare, such as services from a community nurse or specialist therapist, and personal care, such as help with bathing, dressing and laundry
  • a care home – as well as healthcare and personal care, the NHS will pay for your care home fees, including board and accommodation

The impact on state benefits

You may have concerns about what happens to Pension Credits, Disability Living Allowance, Attendance Allowance and other benefits when you receive continuing healthcare funding.

The situation can vary depending on whether a person is receiving care at home or is in a care home. It can also depend on what rate of any given benefit a person is receiving.

The affect receiving NHS Continuing Healthcare will have on other benefits will depend on where you receive your care:

Care at Home – Social Security Benefits shouldn’t be affected nor your pensions, so you will still be able to claim Attendance Allowance or Disability Living Allowance for as long as you meet the eligibility criteria for these benefits. However, any benefits which are based on local social services paying for the care might be affected if they stop being responsible for your care when you receive NHS continuing healthcare. 

Living in a Care Home – State pensions are not affected (nor any private or occupational ones) but you will lose Attendance Allowance or Disability Living Allowance after 28 days. 

How to appeal

If you don’t agree with the assessment, and you have been turned down for NHS continuing healthcare, you can appeal by asking your local Clinical Commissioning Group, Health Board or Health and Social Care Trust for a review of their decision. This must be requested in writing within six months of the notification that you were ineligible.

Make sure first that you’re familiar with the Continuing Healthcare eligibility criteria.

The NHS should have sent you information about the formal appeals process and how to proceed. Here’s what to do next:

  • Write to the manager or coordinator of the NHS continuing healthcare team at the local NHS Clinical Commissioning Group (CCG). This is the team that made the decision and/or arranged the assessment(s)
  • State that you disagree with the outcome, and why
  • If you’ve been turned down at the checklist stage, ask for it to be done again
  • If you’ve been turned down after the multidisciplinary team (MDT) meeting, confirm that you will be appealing. You can also ask for this stage to be repeated if you can show that it wasn’t done properly
  • State that you will be providing arguments and evidence to support your appeal in due course
  • The NHS may reply giving you just a very short time in which to do this. You can, however, remind them of the official timescales for Continuing Healthcare reviews.
  • Then you need to start pulling together all the reasons why you disagree with their decision to deny funding and submit a written appeal to the same NHS continuing healthcare team.

The NHS should look at your reasoning and act on it, which may include a reassessment.

If you have already had a reassessment, and you’ve still been turned down for continuing healthcare, you need to appeal through a different process: you now need to ask the NHS England (the NHS National Commissioning Board) for an independent review.

If their decision was only based on an initial screening, ask for a full assessment. You should be given an opportunity to contribute to the review and to see all the evidence that was taken into account.

You might be able to appeal if you’ve already been paying for care-home fees and think you should have received NHS funding. To do this, speak to your social worker or health practitioner, and ask for a retrospective assessment. If this does resolve the issue for you, again within 6 months, you can request an independent review panel (IRP) to consider your situation.

An independent review panel is made up of:

  • an independent chair
  • a representative nominated by a Clinical Commissioning Group (not involved in the case)
  • a representative from a Local Authority (not involved in the case)
  • and, at times, there is also a clinical advisor in attendance

Click here to view more information about the IRP

As a last resort, you can ask for your complaint to be determined by the Parliamentary Health Service Ombudsman. In all cases, should you remain dissatisfied with the outcome, you will be informed in writing of your right to use the NHS complaints procedure. 

‘Refunds’ for care home fees for people with dementia

There are often advertisements on television and online, regarding claiming back care home fees for people who have dementia. Companies offering these schemes encourage people to appeal the outcome of assessments for NHS continuing healthcare funding at a cost.

A solicitor is not needed to make an appeal. Alzheimer’s Society provides free information and advice to people wishing to appeal NHS continuing healthcare cases, contained in the booklet When does the NHS pay for care? There is also support available through the National Dementia Helpline. 

NHS-funded nursing care

If you are not eligible for NHS continuing healthcare, but you are assessed as requiring nursing care in a care home (in other words, a care home that is registered to provide nursing care) you will be eligible for NHS-funded nursing care. This means that the NHS will pay a contribution, known as NHS-funding nursing care, towards the cost of your registered nursing care. This is available irrespective of who is funding the rest of the care home fees.

By law, local authorities cannot provide registered nursing care. For individuals in care homes with nursing, registered nurses are usually employed by the care home itself and, in order to fund this nursing care, the NHS makes a payment direct to the care home.

NHS-funded nursing care is a standard rate contribution towards the cost of providing registered nursing care for those individuals who are eligible.

Registered nursing care can involve many different aspects of care. It can include direct nursing tasks as well as the planning, supervision and monitoring of nursing and healthcare tasks to meet your needs.

If you are eligible for NHS-funded nursing care the NHS will arrange for the payment to be made directly to your care home and this payment should be reflected in the care home fee actually charged to you.

Who is eligible for NHS-funded nursing care?

You should receive NHS-funded nursing care if:

  • you are resident within a care home that is registered to provide nursing care; and
  • you do not qualify for NHS continuing healthcare but have been assessed as requiring the services of a registered nurse

In all cases, individuals should be considered for eligibility for NHS continuing healthcare before a decision is reached about the need for NHS-funded nursing care. Consequently, most individuals will not need to have a separate assessment for NHS-funded nursing care if they have already had a full multidisciplinary assessment for NHS continuing healthcare as this process will give sufficient information to judge the need for NHS-funded nursing care.

However, if an assessment is needed, your CCG will arrange this. If you are not happy with the decision regarding NHS-funded nursing care, you can ask the CCG for the decision to be reviewed and/or use the CCG complaints process.

Different levels of payment for NHS-funded nursing care

NHS-funded nursing care is paid at the same rate across England. However, until 30 September 2007 there were three different banded payment rates for nursing care.

Any individual that was on the high band of NHS-funded nursing care under the previous three band system are entitled to continue on this band until:

  • they no longer have nursing needs, or
  • they no longer live in a care home that provides nursing or
  • their nursing needs have reduced so that they do not qualify for the high band anymore (they would move onto the single band rate instead) or
  • they are entitled to NHS continuing healthcare instead.

Useful links

You may find the following links useful. Please bear in mind we cannot be responsible for the content on these sites. Websites are constantly trimmed and edited, so any content on a third party site may disappear.

NHS England 

Information and advice service – NHS England recognises that information and support are vital to all individuals involved in the CHC process and so has funded an independent information and advice service through a social enterprise called Beacon. This service is supported by a consortium of leading voluntary sector organisations including Age UK, Parkinson’s UK and the Spinal Injuries Association.

Information and advice is accessible in the form of free and comprehensive written guidance, and individuals are also able to access up to 90 minutes of free advice with a trained NHS continuing healthcare adviser 0345 548 0300.

For further information and to access this service please see the Beacon website

Care to be Different – for articles and practical information Care to be Different

Get practical support on the NHS Choices website

Sources of information

Independent Age: Factsheet – Hospital Stays, what you need to know Independent Age factsheets

NHS Choices: Your guide to care and support NHS Choices

Age UK

Alzheimer’s Society

Money Advice Service

The Department of Health: public information leaflet

NHS England

NHS Choices: Personal Health Budgets

Care to be Different

Advice on Care

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