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This is a complete minefield, I have no idea where to start. Help!
Don’t panic. This is a complex area of health policy which has been baffling medical and legal professionals alike for many years. It is quite normal to feel overwhelmed if you are new to continuing healthcare.

We suggest that you start with our free Navigational Toolkit. Alternatively, if you have a question or would like to discuss anything about your situation, please call us on 0345 548 0300 or send us a ‘Talk to us’ request to schedule a free consultation with a trained NHS continuing healthcare adviser.

What is continuing healthcare?
NHS Continuing Healthcare is a package of care that some people need to receive as a result of a disability, accident or illness. People who meet the eligibility requirements will have the full cost of their care and accommodation funded by the NHS. Continuing healthcare is available to any UK resident over the age of 18 who is assessed as having a primary health need (see question 5 for more information on primary health needs).
What is NHS-Funded Nursing Care?
NHS-Funded Nursing Care (FNC) is a contribution made by the NHS for residents of nursing homes to pay for the care delivered by a registered nurse.

Following the principles established by the Coughlan judgement (see ‘Coughlan and Case Law’ section), Local Authorities were prevented from providing registered nursing services. Instead, the Department of Health introduced Registered Nursing Care Contributions (RNCC) whereby the NHS paid contributions to residents of care homes with nursing. There were 3 RNCC bands; low, medium and high. The band you received depended on the intensity of your nursing needs which were assessed annually.

With the introduction of the National Framework in 2007 RNCC was replaced by a single payment for all residents of nursing homes, known as NHS-Funded Nursing Care (FNC). Residents who had been in receipt of low or medium band RNCC were automatically moved to the FNC single band, currently paid at the flat rate of £112. Residents who had previously been in receipt of high band RNCC remained on that rate, currently £154.14.

Following a review of the rate paid by the NHS to nursing Homes, the funded nursing care rate has increased by 40% to £156.25 of which will be backdated to April 1st 2016 for individuals who were in receipt of NHS-funded nursing care from that time.

The higher rate of NHS funded nursing care has increased to £215.04 (this is only relevant for those people who were already on the higher rate in 2007 when the single band was introduced).

The new rate is being paid on an interim basis while further work is done to review the element of the rate for agency nursing staff (which could lead to a reduction to the rate from 1st January 2017) and to consult on introducing regional variation from April 2017.

How do I claim continuing healthcare?
If you feel that you or your relative/friend needs an assessment for continuing healthcare you should ask your GP, social worker, district nurse, care home nurse or other health professional for a Checklist assessment. This is the first stage of the assessment process and all the professionals listed above are qualified to complete the paperwork, however your Clinical Commissioning Group (CCG) may refuse to accept a Checklist from certain professionals if they have not been trained in how to complete it. Alternatively you can contact your Clinical Commissioning Group’s continuing healthcare department directly to request an assessment. You can find contact details for your CCG by searching for ‘services near you’ here.

Continuing healthcare is not something that can be ‘claimed’ in the way that one might have a ‘claim’ for compensation over the misselling of financial products, for example. For some people the trigger for an assessment may be a fall or a stroke where long-term care is required after a hospital admission, however there are many circumstances in which a person may require an assessment. If you are not sure whether you will be eligible, we would recommend that you get a Checklist assessment completed to find out.

In theory you should be referred for a Checklist assessment automatically if your health deteriorates to the point where an assessment is necessary and your care is being overseen by a health or social care professional. This does not always happen though and people do sometimes slip through the net, particularly where people are funding their own care.

What is a primary health need?
Eligibility for continuing healthcare is based upon the concept of a primary health need, a concept for which there is no clear definition and which does not appear in primary legislation. If somebody has a primary health need then the totality of their health and social care needs will be over and above that which could lawfully be provided by social services and therefore the NHS has a responsibility to meet them. Social services are able to provide some health services but not where the overall needs are primarily health needs.

This is not an easy concept to apply in the context of an assessment which explains why the application of the criteria is open to individual interpretation, even for professionally trained and experienced assessment teams. Essentially, if the majority of your care is to manage your health needs or to prevent further health needs from developing, the NHS has a duty to pay for all of your care needs and accommodation.

So what constitutes a health need? One might assume that a person suffering from dementia who is immobile and unable to wash, dress or feed themselves independently, who requires continence care and the administration of a medication regime by a trained carer would have a primary health need. This is not necessarily so and such needs are often seen as social or personal care needs, although we should be careful not to overgeneralize.

For a fuller explanation please download or request a copy of our free Navigational Toolkit.

What is the National Framework and where did it come from?
In the early 1990s a growing number of people found themselves paying for long-term care which had previously been provided free by the NHS or their Local Authority. Means testing was introduced for Local Authority care through the Community Care Act and subsequently the line between social or personal needs and health needs became blurred. Increasingly, the care costs for people with complex needs were being funded privately by people whose care should have been funded and managed by the NHS.

In the following years, a number of changes were introduced to the health and social care system which we’ve summarised for you:

1996 – Department of Health provided guidance to England’s 95 Health Authorities to write the first sets of criteria on NHS continuing healthcare eligibility.
1999 – Pamela Coughlan won a landmark appeal case against a ruling that she was ineligible for continuing healthcare funding. Following the Court of Appeal decision, the Department of Health instructed all Health Authorities to review their criteria to ensure it was ‘Coughlan compliant’.
2002 – NHS underwent reorganisation. 95 Health Authorities were abolished and replaced with 28 Strategic Health Authorities (SHAs). Department of Health issued further instruction to all SHAs to agree upon a set criteria within each area.
2002 – Following an investigation into NHS continuing healthcare by the Health Service Ombudsman, the Department of Health again instructed all 28 SHAs to review their criteria and bring it in line with the Coughlan judgement. They were also asked to retrospectively review everyone who had been in receipt of long-term nursing care since April 1996, providing compensation where the criteria had been applied restrictively.
2004 – Each SHA in England were working to their own set of criteria and toolkits which led to what became known as the ‘postcode lottery’, where eligibility was partly dependent upon where you lived. This problem was recognised by the Department of Health and in 2004, they began developing a national set of tools and assessment processes to clarify key areas of contention.
2006 – A further NHS reorganisation saw the 28 Strategic Health Authorities merged into just 10 as well as a significant reduction in the number of Primary Care Trusts (PCTs).
2007 – National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care was launched. All NHS trusts were instructed to fully implement the Framework by October.
2009 – Department of Health issued a revised National Framework in July, following wide consultation since initial launch
2012 – Department of Health issued a revised National Framework in November. The main purpose of the latest revision was to bring terminology in line with the pending restructure of the NHS and incorporate the Department of Health’s 2010 Practice Guidance into the Framework.
2013 – Primary Care Trusts were replaced with a greater number of Clinical Commissioning Groups (CCGs). CCGs become responsible for implementing the National Framework with the NHS Commissioning Board (NHS England) replacing the role of Strategic Health Authorities in commissioning responsibilities and reviewing eligibility decisions.
2015 – NHS England published the Operating Model for NHS Continuing Healthcare which brought together the NHS’ overall approach and aimed to help NHS trusts achieve the best possible assessment and care pathways for individuals. The Operating Model included an ‘Assurance Framework’ to help ensure assessments and care pathways be delivered locally in a fair, efficient and cost effective manner.
2015 – Introduction of the Care Act 2014 which represented the first major change in adult social care legislation for 70 years, but did not change the legal limits of Local Authorities to provide health care. Therefore, the primary health need boundary (NHS continuing healthcare eligibility criteria) was maintained.

A common misconception is that the “criteria for continuing healthcare have changed since 2007”. This is an excuse we have heard numerous times from professionals to justify people suddenly dropping out of eligibility at their annual review when assessments reflect no significant change in their care needs. It is important to note that despite the two revisions to the National Framework in 2009 and 2012, the criteria for eligibility have not changed. Instead, the revisions made adjustments to the toolkits and assessment processes.

Is continuing healthcare restricted to nursing homes?
No, continuing healthcare is not restricted to any particular setting and can be received anywhere, including in your own home. This principle was clarified by the Parliamentary and Health Service Ombudsman in 2003 during the retrospective review process. Some Strategic Health Authorities at the time had been rejecting requests for review from residents of care homes without nursing before this point was clarified.

Although far fewer continuing healthcare assessments are carried out for people in care homes without nursing than care homes with nursing, assessments must be based on the individual’s assessed care needs, regardless of where that care is delivered or whether the setting is appropriate. Our experience has shown that some assessment teams still struggle to apply this important principle.

What is the Closedown process and can I have a retrospective review?
In July 2007 the Department of Health announced a cut-off date of November 2007 for individuals who wished to request a retrospective review of a period prior to April 2004. This was in response to the high number of cases still in the system since the retrospective review process was initiated in 2003.

In March 2012 the Department of Health announced new timescales for challenges to assessment decisions and cut-off dates for individuals wanting to request an assessment for a previously unassessed period of care, in an attempt to end ongoing requests for retrospective reviews completely. This was the first time timescales had been imposed for challenges to assessments. The announcements meant that:

  • If you received long term care between April 2004 and April 2011 but had never been assessed for continuing healthcare you had until 30th September 2012 to request a retrospective review.
  • If you had been assessed for continuing healthcare between April 2004 and March 2011 but not awarded funding, you had until 30th September 2012 to appeal that decision.
  • If you had been assessed for continuing healthcare between April 2011 and March 2012 but not awarded funding, you had until 31st March 2013 to appeal that decision.

It is worth noting that as a result of the media awareness campaign that followed, Primary Care Trusts were inundated with an estimated 60,000 requests for retrospective reviews and a combined restitution bill of £600million. This has led to significant delays and backlogs within the system.

As long as you have lodged your intention to appeal or requested a retrospective review within the deadlines for the period being assessed, the team at Beacon can help you with the next stage of the process.

What is a ‘DST’?
DST stands for Decision Support Tool. This is the main toolkit used by the multidisciplinary assessment team (MDT) to organise the evidence relating to your needs into categories. The DST contains 12 generic areas of need or ‘care domains’ with each care domain containing a number of levels of needs and corresponding descriptors to help the MDT assess the severity of a particular area of care.

The 12 care domains are:

  • Behaviour
  • Cognition
  • Psychological and Emotional Needs
  • Communication
  • Mobility
  • Nutrition – Food and Drink
  • Continence
  • Skin and Tissue Viability
  • Breathing
  • Drug Therapies and Medication: Symptom Control
  • Altered States of Consciousness
  • Other Significant Care Needs

The evidence that is used to populate the DST may include care plans, hospital records, social care records, GP records, daily care records, medication charts and risk assessments. In short, any written or verbal information relating to your needs within the assessment period should be summarised in the DST so that the assessment team (MDT) are able to make a fully informed recommendation about your eligibility for continuing healthcare. Financial records should not normally be included because eligibility for continuing healthcare is not means tested and should be free from financial influences.
For a more information about the DST please download or request a copy of our free Navigational Toolkit.

What is an ‘MDT’?
MDT stands for multidisciplinary team and refers to the health and social care professionals who are involved in your care. In the context of continuing healthcare assessments, the minimum requirement for a safe MDT recommendation is two professionals from different healthcare professions, such as a care home nurse and a GP. The National Framework makes it clear that the MDT should consist of at least one health and one social care professional.

The principle of MDT assessments goes even further. Ideally, the MDT who provide information for the completion of the Decision Support Tool (DST) should consist of all health and social care professionals who are knowledgeable about your needs. That same MDT should be involved in making a recommendation as to whether or not you are eligible for continuing healthcare.

So, although CCGs are allowed to only use two health professionals from different healthcare professions, strictly they should use all the health and social care professionals currently or recently involved in the delivery of your care.

My GP tells me I will be eligible, is that a guarantee?
Unlikely, for two reasons. Firstly, many health and social care professionals including GPs and consultants do not properly understand the continuing healthcare criteria. Attitudes toward continuing healthcare in the medical community vary greatly – many see it as an unnecessary administrative burden and some GPs simply refuse to take part in it at all. Unless the professional has spent time working within the dedicated field of NHS continuing healthcare it is unlikely they will fully understand it.

Secondly, eligibility is based upon the presence of a primary health need which is established through an in-depth assessment process in which a multidisciplinary team assesses the totality of your needs. Until this process has taken place nobody can unilaterally decide that an individual will or will not be eligible.

My relative/friend has been in a nursing home for several years, why have I never heard of continuing healthcare?
Unfortunately we have worked with many relatives of people who should have been assessed for continuing healthcare long ago but have ‘slipped through the net’. Typically, this happens when the individual in question is self-funding their own care package and chose their care home or agency without the involvement of social services and did not go into care directly from hospital. Nevertheless, if you are receiving care in a nursing home you will almost certainly be receiving NHS-Funded Nursing Care (FNC). Eligibility for FNC should normally be reviewed annually after a continuing healthcare Checklist has been completed, which means there should be no excuse for CCGs not to be aware of nursing home residents even if they are self-funding their care. Managers of care homes with nursing also have a responsibility to ensure their residents have been referred for Checklist assessments.

If you receive care in your own home it may fall to your GP, social worker or district nurse to ensure the appropriate assessments have been carried out. In theory this should mean that nobody falls ‘through the net’ however in reality, appropriate referrals are not always made by health and social care professionals which means many people may have been in receipt of nursing care for years but have never been assessed for continuing healthcare.

If your relative/friend has never received a continuing healthcare assessment and you think they should have please see the question ‘4. How do I claim continuing healthcare?’ above or contact us for further information.

My relative/friend has dementia. Will she automatically qualify for continuing healthcare?
Eligibility for continuing healthcare is not dependent on a diagnosis so the short answer is no, suffering from dementia does not automatically indicate a primary health need. Eligibility will be determined by assessing your day-to-day care needs and how those needs should be met.

Depending on the progression of the illness a person with dementia, Parkinson’s disease or any other disability or illness will present with a number of health and social care needs, some of which may well be intense, complex and/or unpredictable. If any one particular health need or a combination of those needs is assessed as being of an intensity, complexity or level of unpredictability that means their primary need is for health, then they will be eligible for continuing healthcare.

Are decisions influenced by money?
According to the 1946 NHS Act, nursing care in England must be provided free at the point of delivery. This means that if your needs have been assessed as primarily health needs by law, then the NHS must pay the full cost of your health and social care and accommodation. NHS continuing healthcare is not means tested and financial considerations must not be taken into account. Coordinating assessors should not ask you questions about your financial situation and if they do you do not have to answer them because they do not need that information in order to assess your needs. Likewise a person’s continuing healthcare status should be established before means tested social care is considered.

The National Framework is absolutely clear about this issue and makes provisions to ensure that decisions regarding eligibility are free from budgetary and commissioner influences. Beacon’s caseworkers have dealt with cases in the past where commissioner influence on decision-making panels had clearly occurred. In each case our challenge to this procedural failure was upheld and the assessment process started again.

If I am eligible, is it for life?
No. Continuing healthcare is based on an assessment of care needs and how those needs should be met rather than on a specific diagnosis, meaning it is common for these needs to change over time. For this reason if you have been assessed as eligible for continuing healthcare, you can expect your needs to be reviewed 3 months from the original decision and annually thereafter.

This does mean that it is possible for individuals to drop out of NHS funding at a later stage despite presenting with very similar needs.

If you are in situation whereby eligibility for continuing healthcare is being withdrawn, it is important that you request a thorough explanation in writing from your Clinical Commissioning Group as to why they believe you are no longer eligible. If you disagree, you can challenge that decision.

If I am eligible, will my benefits be affected?
Some benefits will change when you become eligible for continuing healthcare. If you receive Attendance Allowance (AA) or Disability Living Allowance (DLA) in a care home with nursing, these will normally stop 28 days after continuing healthcare begins, however DLA will not normally stop if you are not receiving care from a qualified nurse or you receive care in your own home. If AA or DLA benefits stop, other disability-related premiums may also be affected.

In any case, if you are in receipt of either AA or DLA when you become eligible for continuing healthcare it is advisable to contact the AA and DLA units on 03457 123456 to inform them of the change.

In your experience what is the key to a successful claim?
Continuing healthcare is not something that can be ‘claimed’ as such. According to the eligibility criteria you are eligible if your care needs are primarily health needs rather than social or personal care needs. A multidisciplinary needs-based assessment is used to establish whether or not you are eligible.

Beacon’s caseworkers have successfully appealed hundreds of continuing healthcare cases where the individual was wrongly turned down for continuing healthcare funding, resulting in restitution of millions of pounds for our clients. No two appeals have been the same and unfortunately there is no magic formula for winning an appeal. For over 10 years we have been building up a wealth of knowledge about how to challenge procedural failures, the type of information that is required in order to win a case and the how that information should be presented.

Our free Navigational Toolkit contains detailed advice about how you can prepare for your assessment or that of a relative/friend, in order to give you the best chance possible of success. It will also help you to navigate the appeal process which can be a daunting experience if you have not been through it before. The Navigational Toolkit can be downloaded using the form at the top of this page.