Back to Basics: NHS continuing healthcare eligibility

NHS continuing healthcare (NHS CHC) is a package of care that is solely funded by the NHS, which is provided to an adult who is assessed as having a primary healthcare need. The NHS can commission the eligible person’s package of care at home or in a care home. Alternatively, the eligible person (or their attorney, deputy or nominated representative) can request a personal health budget (PHB) that can be used to fund a package of care at home.  

NHS CHC assessments and eligibility decisions are administered by local health boards (LHB) in Wales and by clinical commissioning groups (CCG) in England. England and Wales each have their own national framework guidance and assessment tools, as health and social care are devolved to the regions. The current Welsh framework was implemented in April 2022, and the current English framework has been in place since October 2018. The two wsets of guidance have many underlying principles in common, but also some key differences. 

Establishing eligibility for NHS CHC is attractive to our clients because it is non-means-tested: a person who is eligible should have their care costs fully funded by the NHS and should not have to use their income or assets to pay care fees. With care fees falling between £750-£1,500 per week for care at home or in a care home, a person with an award of NHS CHC can save between £40,000 to £80,000 per year. The figure saved will be much higher where the person has a complex package of support involving 2:1 care on a 24-hour basis. 

Our clients are largely unaware of the statistical reality of how few people qualify for NHS CHC. NHS England publishes quarterly NHS CHC data: the most recent figures indicate that 54,498 adults in England were eligible for NHS CHC in the third quarter of 2021/22. Only 34,420 of these people were eligible for standard NHS CHC, with the remainder being eligible under the fast track pathway. Data from NHS Wales suggests that around 5,000 adults are eligible for NHS CHC at any given time. 

There is a huge amount of information and many valuable resources about NHS CHC in the public domain, but more than in any other area of the law relating to care funding, there is a lot of inaccurate information. While some of the myths appear designed to deter our clients from applying for NHS CHC or challenging a negative decision, there is also an unhelpful narrative that suggests that almost all people with care needs should qualify. This can result in our clients having unrealistic expectations about their prospects of success. When this is combined with our clients’ frustration about a social care funding system that will leave next to nothing to pass through inheritance, and the stress caused by catastrophic care needs, this can make the process of providing frank advice about NHS CHC eligibility hard to navigate. 

This article is intended to provide a practical overview that you can work through when you are advising a new or existing client before an initial assessment for NHS CHC; ahead of an eligibility review of an existing NHS CHC award; or after a negative eligibility decision. 

NHS CHC basics and initial advice 

Before or when you speak to your client about an application for NHS CHC, or about appealing a negative eligibility decision, it is helpful to establish the eligibility basics with them. This allows the advice meeting to focus on the finer details of their case, rather than spending chargeable time discussing generalities. As a starting point, you should explain to your client that the following factors are not relevant to CHC eligibility (even if health or social services have told them that they are relevant factors):

• the person’s diagnosis
• the placement in which care is provided
• the ability of the care provider to manage the person’s needs
• the fact that a need is well managed 
• the use of NHS staff to provide care – for example, GPs and district nurses
• the need for ‘specialist staff’ in care delivery
• the existence of other NHS-funded care, or 
• any other input-related (rather than needs-related) rationale.

In a case where the CHC assessment hasn’t yet taken place, sending a link to the checklist and/or decision support tool in advance of the initial advice meeting will enable your client to become familiar with the care domains (the categories which people are assessed against to determine funding), and to take a view on what scores or weightings they think will apply in their case or their relative’s case. If your client can send their comments back to you before you speak, then you can narrow down the care domains that are likely to be in dispute at the assessment stage and add value to the initial advice process.  

If there has already been a negative eligibility decision about an initial NHS CHC assessment, or a decision to withdraw an existing award of NHS CHC, then ask your client to send you a bullet-point summary of what they believe the nurse assessor or multi-disciplinary team got wrong when they described and weighted the needs in each care domain.

Your client may want to give you a very detailed history of their or their relative’s needs. NHS CHC eligibility is based on an assessment of the person’s current needs, not what has gone before – but there could be relevant factors in the background that will assist you in advising about current eligibility. You may want to invite your client to prepare a chronology of key dates and facts so that you can consider these before the advice meeting and be ready to explore issues that are pertinent to current eligibility. 

What is the difference between a primary health care need and a social care need?

This question is critical to establishing eligibility for NHS CHC, and it is likely to be a question to which your client expects a definitive legal answer. Unhelpfully, there is no strict or simple legal definition of what does or does not amount to a primary healthcare need. The law and guidance in both England and Wales make it clear that it is unlawful for social services to provide support or to arrange / fund support which should be provided by the NHS, unless such provision is “incidental or ancillary” to the provision of social care support. This is a rather woolly starting point, but keep in mind that if social services would not accept a legal duty to fund your client’s needs if your client qualified for means-tested social care support, because those needs are of a healthcare nature, then social services should support your self-funding client’s case for NHS CHC. In other words, it is not only unlawful for social services to provide support for someone with a primary healthcare need, but equally unlawful for a self-funder to pay privately for their primary healthcare needs to be met. 

Both the English and Welsh national frameworks explain that there are four main characteristics of need, which “may help determine” whether the quality or quantity of care required is more than the limits of the local authority’s responsibilities as outlined in the case of Coughlan & Ors, R (on the application of) v North & East Devon Health Authority [1999] EWCA Civ 1871, such that the needs should properly be categorised as primary healthcare needs. These four characteristics or key indicators of a primary healthcare need are:

• nature
• intensity
• complexity
• unpredictability.

We tend to abbreviate these key tests as NICU. Both frameworks have a list of questions that the NHS CHC assessor should consider when looking at the primary healthcare test. You will want to work through these with your client as you build their case. It might be too overwhelming to expect your client to focus on NICU at the initial advice meeting, but you could ask them to spend time on this as part of the follow-up process. The point that we need to convey to our clients about any NHS CHC eligibility dispute is that there is no black and white criteria, so prospects of success in establishing eligibility are a matter of teamwork. As the adviser, you can analyse the available records and set out the key arguments, but the care records will often be lacking in content or detail. This means that you need input from your client to fill in the gaps and to build a robust portrayal of the NICU factors.

The NICU questions are set out in sections 3.3 to 3.6 of the practice guidance in the English framework. The Welsh framework has a short summary of NICU at section 3.58. 

Applying for an NHS CHC assessment 

The threshold for an assessment is low: the CCG or LHB is required to take reasonable steps to ensure that it assesses eligibility for NHS CHC where it appears that the person may have a need for such care. 

In practice, where the person is not already known to the CCG or LHB, an initial assessment for CHC is often triggered at or around the point of discharge from hospital. During the pandemic, it became mandatory for health and social care assessments to take place out of hospital, and in many cases the person’s care arrangements were fully funded from the National Discharge Fund pending completion of those assessments. This funding model, known as “discharge to assess” in England and “discharge to recover” in Wales, was a development that was warmly welcomed by health and social care providers. It was also helpful for our clients to have a period of fully funded care while making decisions about appropriate longer-term support. Unfortunately, the English central funding pot ceased to operate on 31 March 2022; in Wales, some central funding continues as at the date of this article.

Referrals for CHC assessments are often made by a social worker when they meet a person for the purposes of conducting a social care assessment under the Care Act 2014. Social services have a duty to inform the NHS if they feel that a person might be eligible for CHC.

If your client is not automatically referred for an initial CHC assessment when they have developed long-term care needs, then you or their family can initiate the process by contacting the relevant CCG or LHB. The relevant health body is generally the one that covers the geographical area where the person’s GP is based. Some CCGs or LHBs have arrangements with their social services partners, or district nurse teams, to undertake the initial screening assessment. 

When a person is already known to the CCG or LHB, because they have an existing CHC award, or have previously been assessed as ineligible for CHC, systems should be in place for a review of eligibility. You may find that the health body is swift to arrange a review for someone who has a CHC award, as each review presents an opportunity to find them ineligible and save NHS resources; but less swift to periodically review a person who was previously deemed to be ineligible. 

You will need to consider an application via the fast track pathway if your client has a rapidly deteriorating condition that may be entering a terminal phase, has an increased level of dependency and needs an urgent package of care (England and Wales), or there has been “a catastrophic event where professional judgement indicates that the individual has evidently developed a primary health need” (Wales only). Fast track assessments should be completed by an appropriate clinician. The expectation is that the CCG or LHB has a robust and responsive fast track process and that a package of care is put in place within 48 hours where possible. 

The CHC assessment process

The first stage of the CHC assessment process is generally the completion of the checklist, which is a screening tool. It is not mandatory to use the checklist – it may be appropriate to go straight to the decision support tool stage. 

If the checklist is being used, the assessor will score your client’s needs in the 11 healthcare domains, giving each domain a score of A, B or C. Your client will ‘pass’ the checklist and pass through to a full CHC assessment if they get:

• two or more A scores
• one A score and four B scores
• five or more B scores, or
• one score in a domain marked A* (those with a priority weighting in the box below for example: behaviour; breathing; drugs therapies and medication; altered states of consciousness).

The checklist sets an intentionally low threshold. If your client is ‘screened out’, this either indicates that they have minimal and routine needs that are evidently of a social care nature; or that something has gone wrong at the assessment stage. You cannot appeal against a negative checklist; you would need to use the NHS complaints system to challenge the decision. It may be quicker and more cost-effective for your client if you submit a letter to the CHC team setting out where you think the domains have been incorrectly scored, and attaching brief documentary evidence in support (for example, care plans, hospital discharge summaries or medical letters).

If your client is ‘screened in’ at checklist stage, the process moves to the completion of the decision support tool (DST) by a multi-disciplinary team (MDT). Unlike the checklist, the DST stage does not revolve around a simple ‘scores on the doors’ approach. The MDT will allocate a score or weighting for each care domain, but they will also apply the primary healthcare need NICU indicators as described above. 

Both the English and Welsh frameworks state that a clear recommendation of eligibility to NHS CHC would be expected if there is: 

• a level of priority needs in any one of the four domains that carry this level, or 
• a total of two or more incidences of identified severe needs across all care domains. 

The frameworks go on to say that a primary healthcare need might be indicated if:

• one domain is recorded as severe, together with needs in other domains, or
• there are several domains with high or moderate needs.

In my casework experience, most CHC decision-makers will work hard to argue that one severe score does not indicate a primary healthcare need and they will use the NICU analysis to argue that the person’s needs are routine and of a social care nature. 

We should keep in mind that it is difficult or relatively unusual for a person to receive a priority-level weighting. For example, a person who is in a coma will be given a priority weighting in the altered states of consciousness domain; a person who is unable to breathe independently and requires invasive mechanical intervention will be given a priority weighting in the breathing domain; and in either case, the person should be automatically agreed as eligible for NHS CHC. 

The decision-making process and appeals

After completing the DST, the MDT makes a recommendation as to whether the assessed person has a primary healthcare need or not. Both frameworks set out the expectation that the CCG or LHB will accept the MDT’s recommendation unless exceptional circumstances apply. The reality on the ground is that it is relatively common to find that the MDT’s positive recommendation is rejected when the case goes to the CCG or LHB. In this scenario, you may consider whether to run a procedural challenge for your client. This could involve sending a judicial review pre-action protocol letter, although you will want to carefully analyse the judgment in R (Gossip) v NHS Surrey Downs CCG [2019] EWHC 3411 (Admin) before you go down that path.

The CCG or LHB decision should be communicated in writing, with sufficient detail to allow you to understand the rationale for the decision. If your client is found to be eligible for CHC, then you will move on to advise about where and how their care package is commissioned, and whether it is appropriate to request a PHB. If your client is found ineligible for CHC, then you will want to consider whether to challenge that negative decision. The time limit within which an appeal should be submitted is generally six months from the date of the letter confirming ineligibility, but you should be vigilant for correspondence from the LHB or CCG that seeks to impose a shorter time scale. 

If you are acting as a professional deputy for property and financial affairs for a client who is ineligible for CHC, or if you are advising a lay deputy for property and financial affairs, then you or they will need to seek specific authority from the Court of Protection to challenge the ineligible decision. If you do not have authority, you are at risk of not being allowed to recover the deputy’s legal costs (their own or those of a specialist who is instructed) for running that challenge on annual assessment by the Senior Courts Costs Office. For more detail, see Senior Judge Hilder’s decision in Re ACC & others [2020] EWCOP 9.

The first stage of the appeal process in both England and Wales is local resolution. If this is not successful in overturning the negative eligibility decision, the case can go to the Independent Review Panel (IRP). If the negative decision is upheld at the IRP stage, there is the option of referring your client’s case as a complaint to the Public Services Ombudsman for Wales or the Parliamentary Health Service Ombudsman for England. We need to keep in mind that the remit of the Ombudsman tends to be rather narrow in relation to NHS CHC matters and they generally cannot overturn a negative decision, but will simply send it back to the IRP if there is evidence of maladministration in the decision-making process. 

After your client is found eligible for NHS CHC: additional tensions

Having overcome the various hurdles of establishing that your client is eligible for NHS CHC, you may find that you have a new set of tensions to resolve in terms of what their package of care will comprise and where the care will be provided. While in many cases you will find that it can be resolved with dogged persistence (and legal time / costs), you may find that you have to consider a public law challenge to secure the outcome that your client or their family needs. Such public law challenges must be dealt with through correspondence, the NHS complaints system or through High Court litigation, because they fall outside the NHS CHC appeal process. While the positive eligibility decision is welcome, and your client or their family will be happy about the money that will not have to be spent on care costs, you might find yourself thinking ‘be careful what you wish for’. 

NHS CHC and top-up payments 

If your client is living in a care home placement, the CCG or LHB will generally take over the contractual responsibility and commission the placement directly. This is not contentious when the placement cost falls within the amount that the CCG or LHB considers it is reasonable to pay to meet your client’s assessed eligible health and social care needs. We need to keep in mind that having accepted a legal duty towards our client, the award of NHS CHC must be sufficient to cover their social care needs in addition to their healthcare needs. 

What happens if your client is already living in or is planning to move to a more expensive care placement? Your client and their family might think that this is identical to the situation where the client is a self-funder or has social care funding: they have a legal right to pay a top-up to cover the chosen care placement. 

Topping up is not legally permissible under NHS legislation: the NHS has a duty to pay ‘all or nothing’. To tackle this, you would first ask the CCG or LHB to consider funding the full cost. You would present your request with reference to your client’s need for the particular care arrangements that cost more, being careful to use the language of need and not of choice or preference. 

If this tactic doesn’t work, and a public law challenge is not merited or affordable, then you may be able to use the framework guidance on additional privately funded care to navigate your way around the top-up ban. In essence, this entails persuading the CCG or LHB to permit a separate payment for some of the care home extras (a premium quality room, for example), and is sometimes referred to as a silver service agreement or a lifestyle choice agreement. While not ideal, this may be better for your client than moving to a less expensive care placement. In this ‘non-top-up’ scenario, the additional payment can be made from your client’s income and assets, including a personal injury award, or by their relatives contributing to the cost. 

You should also check the Competition and Market Authority’s consumer law guidance for care home providers (revised December 2021): this might help identify contract law arguments that could be used to push the care home to accept the CHC rate of funding. 

NHS CHC at home 

As mentioned in the introduction, it is possible to have CHC funding when living at home, and this may involve use of a PHB (England only). My team has a large number of clients with CHC-funded care at home, often but not always working-age adults. Again, the tension arises when the care at home package costs more than a care home placement. 

The law allows the NHS body to take into account comparative costs and value for money when responding to a request for a CHC-funded package at home. Where an adult requires a highly complex package of care with 2:1 support day and/or night, it will almost always be more cost-efficient for the NHS to commission this in a care home, where there are economies of scale. However, the NHS must properly consider your client’s individual circumstances and their right to respect for private and family life. Both frameworks remind the NHS body that it must not set arbitrary ceilings on care at home packages based purely on the notional costs of caring for an individual in a care home.

You should push the argument of need not preference as far as you can, to increase the amount of CHC funding or commissioned care, and leave as few gaps as possible. If there is still a funding gap, you may need to look at the additional privately funded care arguments to see if they offer a solution. However, some LHBs and CCGs take a very strong line and will only allow CHC at home where your clients friends or family are prepared to fill in the gaps at no cost.