A series of recent cases have raised the question as to whether clinical commissioning groups (CCGs) act lawfully if they take decisions about eligibility for NHS Continuing Healthcare (CHC) using a decision-making process that departs from the requirements set out in the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 SI No 2996 (the 2012 Regulations) or in accordance with the guidance set out in the National framework for NHS Continuing Healthcare and NHS-funded nursing care (Department of Health and Social Care, with editions dated 2012, 2013 and later amended with effect from October 2018) (the National Framework). Inherent within the National Framework are procedural checks and balances, preventing CCGs from making non-eligibility decisions based on anything other than the person’s needs. However, as with many aspects of the assessment and decision-making procedure, the checks and balances are often disregarded by CCGs, which make the final decision on eligibility, resulting in increasing numbers of clients having to fund their own care.

I am instructed by the elderly, those with catastrophic injuries and those born with debilitating conditions, attempting to secure funded care to meet their care needs. Given the level of disability, most are assessed for NHS CHC. This is non-means-tested NHS-funded care. In contrast, service users have to pay for all of their social care provided by a local authority if they have more than £23,250 in capital. Capital includes equity in a home, savings and investments (even cash under the mattress). It is therefore always preferable for the client to be found eligible for CHC, otherwise their lifetime savings are spent on funding their care.

Care costs are incredibly expensive: residential care cannot be easily sourced for less than £1,000 per week. Given the financial burden placed on families if they are required to meet care costs, one would expect there to be a clear, well-governed assessment and appeal procedure, complete with independent tribunals and precedent decisions that interpret the legislation and guidance shaping future decisions. Unfortunately not. The CHC decision-making process can be a closed, opaque and frustrating chase around an NHS maze where the rules change around every corner and even when there are clear rules, they are routinely disregarded by NHS decision-makers.

The history of CHC is obscure but R v North and East Devon Health Authority ex p Coughlan [2001] QB 213 presents a key milestone. In this case, the Court of Appeal sought to explain where the boundary between health and social services responsibility lies. The court said that as a general indication (although this formulation is now in the 2012 Regulations) there are just two factors. Care services, which may have a health element, remain the responsibility of a local authority if they are:

Following Coughlan, the National Framework guidance was introduced to explain the overlap between health and social care. It provides a tool to assist the assessment of someone’s needs and spells out the procedure that must be complied with when assessing eligibility, ensuring that neither health nor social care bodies can put too much weight on the decision-making process.

Regulation 21 of the 2012 Regulations requires that when carrying out an assessment of eligibility for CHC, the CCG must ensure that a multi-disciplinary team (MDT) undertakes an assessment of needs. The MDT must include at least two professionals who are from different healthcare professions, or one professional from a healthcare profession and one person responsible for assessing care and support needs under Care Act 2014 s9.

The MDT must complete the Decision Support Tool (DST), working through a list of 12 care domains and scoring the needs as either a ‘priority’, ‘severe’, ‘high’, ‘moderate’, ‘low’ or ‘no need’. The DST (para 31, page 8) states that a ‘clear recommendation’ of eligibility to NHS CHC would be expected in each of the following cases:

Either of the following may also indicate a primary health need:

The National Framework provides that if there is a dispute between the MDT members over scores on the DST, the higher score should be selected (DST, para 21, page 6). However, in every case I have looked at, the nurse assessor records the lower score and occasionally makes a note on the DST that there was a dispute. This is an incorrect approach - it is not the nurse assessor’s view that should prevail but those of the other MDT members who are far more familiar with the applicant.

Once assessed, the MDT makes a recommendation as to whether or not the applicant has a primary healthcare need. If they do, it would recommend that they be eligible for CHC. All MDT members must complete the recommendation page.

At the final decision-making stage of an assessment, a CCG panel reviews the DST and makes the final decision on eligibility. The panel are only permitted to depart from the MDT recommendations in ‘exceptional circumstances’ (see below). When faced with a dispute between MDT members on eligibility, the panel must identify the areas of contention and refer the matter back to the MDT, asking that it resolves the dispute and, when done so, sends it back to the panel. If the MDT members then recommend eligibility, the panel must find the applicant eligible.

The National Framework provides that the MDT is required to make a recommendation as to whether the individual has a primary health need and that ‘[o]nly in exceptional circumstances, and for clearly articulated reasons, should the [MDT’s] recommendation not be followed’ (para 153, page 45). Far too often, though, I see panels disregard the non-CCG MDT member’s recommendations and substitute them with their own views. CCGs appear to have forgotten their role in the process – they are not the experts, the MDT members who know the applicant are. The CCG is required to accept the MDT’s recommendations and is not permitted to substitute them with its own views.

Practice Guidance Note 39 (National Framework, page 130) provides a list of exceptional circumstances where a CCG might not accept an MDT recommendation regarding eligibility for CHC:

A prime example of a CCG dismissing the MDT’s recommendation is the case of my client who, following a car accident resulting in an acquired brain injury, has short-term memory loss with regular confabulations and a condition that means he must drink exactly 2.5 litres of water a day, no more, no less. If he did drink more or less, he would disrupt his sodium levels and have a stroke. Because of his short-term memory loss, he forgets he has drunk water and because of the confabulations, he will become aggressive and argumentative if challenged over his water intake. These behavioural issues, combined with his water intake risk, mean that no other residential setting apart from a specialist brain injury unit will accommodate him, not even other brain injury rehabilitation units.

He had CHC, which was reviewed. Four out of the six MDT members argued that he should score ‘severe’ in behaviour, cognition and nutrition. The two nurse assessors from the CCG refused to score ‘severe’ and down-scored him to ‘moderate’ in behaviour and cognition. The non-nurse assessors were so adamant that my client was eligible for CHC that they refused to sign the DST and made full written recommendations for fully-funded CHC. The CCG panel dismissed the MDT recommendations and found my client not eligible for CHC, without any reference to there being exceptional circumstances.

Neither at the local resolution meeting nor the independent review panel would the chairperson engage with my argument that the matter should be referred back to the CCG in order that a lawful decision be reached. Both were content to proceed on the basis that the MDT were not the experts, and that the CCG and indeed themselves were more qualified to decide on eligibility.

I sent a pre-action letter to both NHS England and the CCG. I asked NHS England to withdraw its decision on appeal and return the matter to the CCG in order that the decision be rescinded if the CCG could not reach a lawful decision. NHS England returned the matter to the CCG. The matter has now settled, the CCG accepting the procedural flaw, and agreeing to reimburse £100,000 spent on care fees plus costs.

In my experience, CCG assessors, CCG panels and NHS England appeal panels routinely disregard, in one way or other, MDT decisions, when assessing an individual’s eligibility. This is an unlawful practice. The expertise in this decision-making process lies with the MDT. The CCG panel is required to accept the conclusions of the MDT assessment unless there are genuinely exceptional circumstances and, even then, only after a further dialogue with the MDT. I would be very interested to hear from others who have also come across similar practices.