NHS Continuing Health Care

What is continuing NHS health care funding?

It’s an entitlement to services to meet one’s illness or injury or disability-related needs in any given setting, free, from the NHS, albeit other than in a hospital. The reason for it being a much fought-over thing – as between people and the PCT/CCG/CCG, and between PCT/CCG/CCGs and local authorities – is that it is often about the sort of input or supervision or expertise that the district nurse or primary care services in one’s area cannot actually manage to provide – pricey stuff, in other words – and because a lot of it can sometimes look like sophisticated social or personal care for sick people, which – unlike free NHS health care – is chargeable by local authorities, legally, according to the recipient’s own financial means.

How to change the way the interface operates locally:

For a culture of challenge to be introduced, one would either need patients and families with enough Get Up and Go to challenge the PCT/CCG/CCG – or an administrative or legal challenge from the council or a pressure group.

There should also be

  • an expectation from the top, down, that there be robust challenge in individual cases where the council is involved, and
  • support by formal legal advice which council lawyers can provide;
  • in addition, high level communication between your Adults Services’ director or Assistant Director and the Board of the PCT/CCG/CCG, supported by enlisting the Monitoring Officer’s assistance in-house, describing the legal risk the council is exposed to, by just standing by and doing nothing;
  • resourcing and urgent priority given to sorting out and finalising the protocol and operational policies for consideration and the interagency dispute resolution mechanism, so that they actually meet the concerns of councils.

 

If public authorities can at least get into discussion, here’s how relations can be improved and make progress…

  • Has the council got a CHC champion? i.e. a senior practitioner who makes it their business to push for CHC, or to push for better process so that they don’t have to fight every single case from square 1 again? Does that person get a good reception from the CHC co-ordinator at the PCT/CCG/CCG – or is there a perceived hierarchy thing, going on?
  • Does the PCT/CCG/CCG monitor patterns of eligibility decision-making to identify and address variations between areas, (hospital vs community) and equalities groups?
  • Is there peer review of eligibility decisions, management audit of practice, and a consistent protocol around completion of the Decision Support Tool?
  • Are the organisations’ clinical and social work professionals apparently gathering relevant, accurate and up-to-date information about an individual’s health and social care needs, and applying professional judgement to decide what this information signifies  in relation to those needs?
  • Has your organisation got good representation at the MDT stage? What about at the PCT/CCG/CCG decision-making stage?
  • Has everyone had a joint training programme which actually made any difference?

The history and the case law

In 1999 a high-profile case re-drew the boundary line between NHS and social services’ funding of nursing care in nursing homes. The Coughlan case was of fundamental importance to Health and social services authorities, hospital discharge teams, care managers, clients, particularly those who are better off financially – and their families – yet the practical implications of it for users and authorities were not generally worked out in the 2 year period after the judgment, or taken advantage of by councils, for their own or anyone else’s good…

The case determined that social services were able and obliged, after a favourable assessment of a person’s ongoing needs for nursing care, to contract for people’s nursing care and attention in a care home, (and therefore re-charge for it under national compulsory charging rules) when the quantity and quality of care was such as to be only ‘ancillary’ or ‘incidental’ to the person’s other social care needs.

When someone was over that line, there was no legal power to pay or purchase the extra ‘nursing input’ services, because the government had determined that a need for nursing care courtesy of the NHS (identified, the Court laid down, by looking at the range, frequency, intensity, specialism and continuity of the person’s nursing needs) had then necessarily to be met by Health Authorities. And since if the person had stayed in hospital, ALL of their services would have been free, then it was only right that the NHS should pay for the whole of the cost of care for that person – accommodation, personal care, social care and health care.

Thus whilst HAs (now PCT/CCGs, and soon to be CCGs) were entitled to have discretionary criteria for the trigger point at which they would acknowledge that they would have to meet such needs, (now laid down by the National Framework, since 2007) those criteria were supposed to be set with the legal limitations on local authorities’ service purchasing powers in mind.

Most HAs’ criteria had focused on the skill factor, meaning that unless truly exceptional levels of specialist nursing care were needed, no-one qualified for continuing care in a nursing home setting, funded by the HA.

In Coughlan, the court emphasised that it is not merely the fact that a client could feasibly be cared for in a nursing home setting which determines that the LA is properly liable for the funding: the NHS should still be paying for some people in nursing homes by way of direct contracts with the home, in whole or, in part – the Court envisaged splitting the cost for those who did not qualify for full care. That would mean that the nursing home placement, and the basic care and nursing and the rest of the package could be paid for by social services and re-charged to the client, but the extra hours of attention needed for an individual, over the norm, should be funded by Health.

This judgment meant that probably half the criteria in the country were drawn up unlawfully narrowly and need reviewing; but it also suggested that half the nation’s local authority criteria for nursing care, as opposed to residential, were probably set too high as well – higher even than the point where the judges envisaged that the NHS should be shouldering some or all of the responsibility.

Another implication was that where people were still placed and fully funded by a local authority, despite being clearly an NHS responsibility, they may wrongly have been expected to sell their home and fund their own services through the LA’s charge, and hence they or their estates would have legitimate grievances which may well come home to roost by way of litigation to recover the money from one authority or the other.

This judgment should have heralded greater co-operation between authorities in evolving more reasonable criteria for eligibility for free NHS care, outside a hospital setting. Instead, with joint working on everybody’s minds, and the fact that the change in emphasis in the law was inaccessible to patients and their families, not much was done in practice to overhaul criteria and lower the thresholds.

The real reason that the Coughlan principle was of only limited use to patients, though, was that professionals could not readily agree what basic nursing was, or how to express that, or what was particularly intensive or frequent or skilled nursing. One cannot have a view of those factors, without some sort of an evaluation against a baseline matrix or consensus.

This crucial missing link was to some limited extent laid down by government through the adoption of an assessment tool called the Registered Nurse Care Criteria. This tool was developed to be used within new framework guidance for the provision of free nursing care in a nursing home, so that no-one ended up worse off financially, just because they can feasibly be cared for outside of a hospital, instead of in hospital. But the government’s choice as to what to do about the findings of the Royal Commission on long term care stopped short of funding everybody’s full nursing home packages from NHS funds, and thus people were still likely to perceive themselves as being better off staying in hospital. It is an unavoidable truth that if you are in a hospital, everything is paid for by the NHS, regardless of whether it is personal care, non registered nurse care, registered nurse care or the doctor’s services.

The calculation of what was the right amount to pay for nursing in nursing homes was backed by research at the University of Kent into the average amount of qualified and unqualified care people were getting at this time from nursing homes, and it was apparent from that work that even by this stage, post Coughlan, in practice, one had to be fairly dependent to strike anyone in the Health Service or social care services as needing to be in a nursing home, let alone needing to be fully funded in a nursing home – but that one did not necessarily get very much qualified time spent on one’s needs.

Nevertheless, the existence of that ‘wedge’ of funding meant that the Coughlan principle was being obeyed by the State: no-one paid, any longer, for all their nursing, just because they were in a nursing home, now that it existed. It very conveniently stopped it being so straightforward to assert that the level of one’s nursing needs justified a claim for fully free care, because everyone now got something from the State, if they were in a nursing home. And so it became harder, in real life, to qualify for full free NHS funded care, in that particular setting, and councils continued to bear the brunt out of their social care budgets, of the major part of the cost of nursing home care packages, and pass it on to people whose assets could legitimately bear re-charging.

After the introduction of the National Framework in 2007, after much work on the wording of the criteria, and the re-iteration of the principle that a person can have eligibility for free care regardless of setting and regardless of the qualifications whether needed or not by people responsible for the care, the 3 bands were unified into one, some years later.

Eligibility for the mere contribution that is State funded Nursing Care is treated as ‘a given’ in some parts of the country, where people are just funded BECAUSE they have gone into a nursing home. In others, it is something that has to be assessed for, before it is paid, even though one has ended up in a nursing home, because in richer parts of the country there are more self-funders, simply choosing to take themselves off to nursing homes, potentially unnecessarily. In some areas it is the nursing home manager who does the assessment, under arrangements with the PCT/CCG/CCG; in others, it is a team of nurses who are part of the NHS. There are no rules about this, and when the function is transferred to CCGs in April 2013 goodness only knows how this will be managed…

The facts behind Ms Coughlan’s case

In 1993 she and seven comparably disabled patients were moved with their agreement from Newcourt Hospital, which it was desired to close, to a purpose-built facility, Mardon House. Ms Coughlan’s care, which has always included, but had not been confined to, nursing care, was accepted as the responsibility of the NHS after her accident, without question. She was given a promise that she could treat Mardon House as a home for life.

For the first year the John Grooms charity was engaged to run Mardon House, which was leased to the charity by the NHS, and therefore registered as a nursing home under the Registered Homes Act 1984.

By the summer of 1994, however, the arrangement had failed and the premises reverted to the local NHS Trust. Section 21(3) of the Registered Homes Act 1984 excluded NHS hospitals from registration as nursing homes; it was a hospital then, in terms of status, and no question arose as to any of the occupants’ status. The then management decided it did not suit re-ablement and rehabilitation patients to be housed alongside long term disabled people and decided to reconfigure the occupancy profile and services on offer there, and that meant that the patients had to be ‘externalised’. Consequently it occurred to someone now no doubt promoted well away from this saga, that it would make sense to re-assess Ms Coughlan as no longer eligible for continuing NHS health care services, so that she would have no option but to move out and have social care instead. It made little difference to her benefits, and she was not a wealthy person, but she was not best pleased, as she had been told she could make Mardon House her home for life, and she had indeed personalised her unit, and had made it into her home.

P.C. won her legal challenge when she was told she no longer qualified, on the grounds that the Health Authority had made an error of law, when making their decision – namely, that they could decide where to draw the line for their responsibilities wherever they liked, without understanding that there is a legal limit to the services that local councils can legally provide, by way of social care – but that the overall system is supposed to be a comprehensive one, with no gaps between the two separately funded systems…

She also won on the ground that the criteria were unreasonably narrow (so much so that hardly anyone could qualify other than if they were in need of care inside a hospital).

Winning a judicial review was not and is not the same as winning an appeal to the health authority/PCT/CCG/CCG, about one’s status. Winning a judicial review boils down to having the court back your claim to have the decision-maker reconsider your case afresh, without falling into the same error of law that has just been corrected by the court judgement. The judicial review court does not ‘award’ continuing health care status – it leaves it to the proper body to whom that power has been allocated.

Because the facility was now a hospital, and still is one, Pamela Coughlan remained in the facility where she was so settled and happy, and was not actually ever re-assessed for eligibility again, as far as is known to the public.

As far as can be inferred, the facility stayed open perhaps because of the promise of a home for life, and remains a hospital to this day (it is a neuro-rehabilitation specialist hospital in Exeter). So, since it stayed open, she was actually – and may still be – living in something that counts as a  hospital, and thus inevitably getting free care from the NHS, whether she qualifies for CHC status, or not. She would never have had to have been reconsidered, not even later, when FNC came in, when once again, one needed to be half dead to qualify for anything more than that weekly ‘contribution’ to one’s nursing care!

The retrospective exercise mandated by the reports of the Health Service Commissioner in the early 2000s

A ‘retrospective exercise’ was recommended by the Health Service Commissioner (Ombudsman), endorsed by the DH, for the purposes of calculating financial redress for all the packages that better-off people had ended up paying for privately, because they’d been charged for social care.

Four Health Service Commissioner decisions were then made, upholding others’ complaints and recommending reimbursement of large sums of money in cases involving dementia sufferers.

Some time later, the Local Government Ombudsman made findings against Hertfordshire County Council, that an employee had positively misled a client, about having been assessed, when it hadn’t actually happened at all, and made the council pay half the fees incurred in private care. The NHS paid for the other half….

Then the ‘Pointon’ complaint was decided by the HSC. The report re-asserted that it was the totality of the needs that needed to be considered, not just the needs for qualified nursing – although the complaint’s success actually led to a spurious ‘social care’ direct payment for what was clearly an entitlement to CHC, which was not means tested, and not consented to by the client, who lacked capacity, and not able to be consented to, in legal terms, by his wife, as she had no legal authority (nor did anyone at that time) to decide not to assert her husband’s profile of need for what it was understood to be, in reality, by everyone.

Wandsworth LBC ex p Goldsmith was a case on the inadequacies of joint working panel processes as between health and social care, brought by daughter told that her mother must leave residential care BECAUSE she was eligible for Funded Nursing Care (Medium Band) but who disputed the logic, when the NHS could clearly have paid for nursing to go into the residential care home, and thereby pay real respect her mother’s human rights and other needs – the daughter was excluded from the decision-making panel and the Court found procedural and substantive unfairness and no evidence that human rights had been considered. This case was a stick to beat councils and PCT/CCG/CCGs with … (the case and the principles it highlighted are now mentioned in ADASS guidance about panel processes in general….) but very few such joint panels are run any differently now, it is to be noted.

Grogan – a case in January 2006 – made it clear that just because a person was eligible for Registered Nurse Care Contribution, (the small contribution from the NHS introduced in 2003) did not mean that they could not be eligible for continuing NHS health care, on the Coughlan principle. It cited with approval the principle that once you are a patient, you remain entitled to care from the NHS until you are properly assessed not to be, and that one can have such a thing as a shared split liability for continuing care services – some health and some social care input – but that this is not the same as the special status known as ‘NHS Continuing Health Care’!

More recent developments

In St Helen’s MBC v Manchester PCT, the LA actually challenged the PCT’s decision that a person did not qualify for health funding. It lost because there was no judicially reviewable mistake identified by the council. But the court mis-worded the test in a way that threatens to bring back obscurity after the relative clarity of the decision support tool and new national framework.

It was over a package of about £600K annually, so you can see why they bothered. The client has now become ordinarily resident elsewhere, luckily for St Helens…..

Points to note about this case

The St Helen’s case was not a case about the policy approach in the National Framework, which was not yet in force. The criteria in this case contained a locally agreed definition of what constituted a ‘primary health need’.

The St Helen’s court referred back to the Grogan case for the law on this concept: “It was explained (in Grogan paragraph 13-15) that there will be a ‘primary health care need’ if the nursing or other ‘health services’ required by the individual are more than incidental or ancillary to the provision of accommodation which a local authority is under a duty to provide, and are of a nature beyond that which a social services authority could be expected to provide. The nature and intensity of nursing required, whether alone or with other factors, can amount to a primary health need.”

If one actually looks at paras 13-14 in Grogan, it does not mention a primary health care need at all, in fact. It says ‘health needs’, as short hand, we think it must now be admitted, by the NHS, given the reference in the National Framework to the actual statutory source and breadth of NHS powers to provide services, for health-related needs, across the whole package of care, which need to be considered. Here are those two paragraphs to prove it:

“13.  In Coughlan the Court of Appeal record at paragraph 31 that: “The Secretary of State accepts that, where the primary need is a health need, then the responsibility is that of the NHS, even when the individual has been placed in a home by a local authority. The difficulty is identifying the cases which are required to be placed into that category on their facts in order to comply with the statutory provisions. Here the needs of Miss Coughlan and her fellow occupants were primarily health needs for which the health authority is as a matter of law responsible, for reasons which we will now explain. ” (my emphasis)

“14.  The S/S maintains that acceptance and assertion of policy and approach and maintains that it is reflected in the Guidance. The parties before me and thus the Claimant, the Care Trust (the Health Authority, who took no active part) and the S/S all accepted that this policy and approach was one that had regard to the whole package of care and not to constituent parts of it and thus if a person’s primary need is a health need then the NHS will be responsible for providing for that need (and thus for that person’s accommodation if that is a part of the overall need). I shall refer to this as the “Primary Health Need Approach”.

Jones v Neath Port Talbot

Mr Jones had argued in a civil court action against Powys’ and Neath Port Talbot’s Local Health Board that he should be repaid the fees for his Dad’s care, even from before when the LHB had agreed he had qualified for CHC.

The Court said ‘No: you would have had to have succeeded on a legal challenge against the NHS in respect of its failure to have assessed your Dad, at the time you are contending for repayment for – or otherwise, you could also have judicially reviewed its refusal to backdate its acknowledged responsibility….’

Solicitors of the No Win No Fee sort, are making that type of offer, even in 2012, to persuade people who never had a clue about being even potentially able to qualify, to challenge their status, retrospectively….which would be unobjectionable if it was because no-one ever explained the possibility to them. But where the offer is made without good grounds for thinking that the person would have got through the checklist at the time, so as to trigger a DST exercise, it seems more to do with a culture of litigation as a game: ‘They will probably just pay you off with something, at least, if they can’t find your records to even assess you (or your dead relative), so it’s ok to ask, and then we can charge you out of the proceeds.…

However, retrospective claims aren’t just based on government policy. Government policy in this regard is based on the fact that the law (the common law) provides a clear cause of action for these sorts of situation, called restitution, or an action for recovery of money paid under a mistake of law or fact.

PCT/CCGs and Councils could use this Jones case if anyone is fighting with them about retrospective assessment claims, or recovery of inappropriately paid out care home fees, on the basis that the relative should have been given CHC. Councils can suggest that such persons or their estates MUST judicially review the NHS, before the council could cease to charge for what would be, on paper, at that particular moment, unchallenged social care entitlement, NOT CHC services…

PCT/CCGs could, if they dared flout government guidance about retrospective claims, contend that a given person at the relevant time would not have been thought of by any reasonable PCT/CCG as someone for whom a DST assessment process could even feasibly have been thought to be needed. That is not the line the government is taking, but PCT/CCGs can get public law legal advice about that, if they should so desire.

PCT/CCGs won’t exist much longer, and so liabilities for unclaimed restitutionary refunds will have to be passed onto their successors, the CCGs. The deadline for claiming an assessment when one was never assessed at all for CHC status, was 30 September 2012, other than in exceptional circumstances.

R (Booker) v NHS Oldham and Direct Line Insurance (Oct 2010)

Ms Booker had settled a big damages claim for a road traffic injury. She was cared for by the NHS for free. The settlement contained a sum for private services from a particular date in the future – when she was expected to leave her current setting.

Ms Booker undertook to pay back the money to the insurer if NHS continuing healthcare was provided for free after that date. The insurers undertook to continue to pay damages at the agreed rate, if the NHS stopped paying for the care. The PCT/CCG providing the CHC funding, then tried to stop paying for care, based on the contention that she had the resources within that settlement, taken together with the insurers’ undertaking, to pay for her own care, and that it had the right to take that into account and refuse NHS services despite her profile of need entitling her to it, thereby triggering the insurer’s undertaking!

The Court said that such a stance was inconsistent with the NHS Act 2006, the NHS constitution, and the government’s policy on continuing health care rights. The only discretion to refuse to provide emanates from the possibility that the Secretary of State considers it unnecessary to provide services because they are not reasonably required, or would not be necessary to meet a reasonable requirement. If the NHS were to be relieved of its duty, just because a person has insurance or potentially has someone willing to pay for care, primary legislation would have to spell that out.

 

A focus on Ms Coughlan’s profile of needs, albeit not a precedent for other people to rely on for qualifying, since it was only a judicial review case:

“She is tetraplegic with associated mobility problems; doubly incontinent, requiring regular catheterisation; partially paralysed in the respiratory tract, with consequent difficulty in breathing; and subject not only to the attendant problems of immobility but to recurrent headaches caused by an associated neurological condition.”

Where do readers think she would score NOW, if you were to assess her through the Decision Support Tool under the National Framework? What would she qualify for, in a nursing home, or in a tenanted independent living setting? Here is my guess:

Behaviour – no or low needs

Cognition – low or no needs

Psychological and Emotional needs – moderate

Communication – low or no needs

Mobility – high – or severe? The fact that it would be forever could only make it a ‘severe’ at best.

Nutrition – high or severe? The fact that it would be forever could only make it a ‘severe’ at best

Continence – high? The fact that it would be forever could only make it a ‘High’ at best

Skin and tissue viability  – moderate or high?

Breathing – high or severe? The fact that it would be forever could have made it a ‘priority’ score, perhaps – but this is the only category with which she could have scored a clear CHC status.

Drug therapies – moderate or high?

ASC – no or low needs

Other significant needs – no needs that we know of

 

It can be seen that it is unlikely that Ms Coughlan would qualify now, and that shows that there is still a drift to chargeable social care from free NHS health responsibility in the sector.

Is there any point in challenging a non-eligibility decision?

As ever, to challenge a public body’s decision about one’s status for care funding, one can only bring proceedings against a PCT/CCG decision by way of judicial review.

That requires an arguable case on an error of law, action outside of the legal framework, breach of procedural fairness or of a legitimate expectation based on a published policy; a breach of human rights, or a totally indefensible and unreasonable outcome.

The review and appeal processes that are now part of the National Framework will make it very difficult for a mistake that is that bad, in terms of focus or breadth, feasibly to survive in place, so as to need challenging, but surviving completely unchanged, for as long as it takes to get to court – because so as long as there is a mechanism for reviewing decisions internally, and the staffing and resources and training, there should be no more judicial reviews that can possibly succeed.

Having said that, it is impossible to find out how CCGs (clinical groups of doctors…) are supposed to be going to be prepared to make the decisions that have to be made. If it is to be the staff supporting CCGs, they will need public law decision making training, unless they have come over from the PCT/CCGs and know all about it already.

Agencies should be asking themselves these questions:

Are there significant gaps in evidence to support the recommendation or decision that you are not happy with?

Is there an obvious mismatch between evidence provided and the recommendation made?

Do we have any solid reason to consider that the recommendation or decision made would result in the council or the NHS acting unlawfully – i.e. buying something it does not have power to buy – or which would be illegal in terms of the way in which it is proposed to be funded?

Has the other organisation’s staff done any of the following:

  • Taken an overly rigid approach to anything, which could be seen to be an error of law, or interpretation of the framework’s advice?
  • Ignored legally relevant considerations, or allowed irrelevant considerations to affect the decision on eligibility?
  • Failed to allow participation in a way that could have had a significant effect on the consideration of eligibility?

And are there prevailing attitudes or decisions, such as:

–          “We don’t need another assessment, even though we can see that things have changed”

–          “We never accept that one severe and a number of highs are enough…”

–          “We won’t let any independent assessor’s views go before the MDT or Panel…even if the client has paid for a report…”

–          “We don’t think that a particular problem can count on more than one domain…”

–          “We don’t have to address the individual’s or the carer’s views at all, since we are the decision-makers.”

–          “We can’t buy nursing for people living in residential care homes…”

–          “We never buy that sort of thing so it can’t be a health care need.”

–          “Those needs aren’t relevant because they’re social care needs.”

–          “We don’t have to buy any social care for a CHC patient”.

–          “We are not putting this person in the higher category even though we know there is a live disagreement between professionals.”

–          “That need is under control now, so that makes it less unpredictable and so it doesn’t count at all any longer.”

–          “The duration of this person’s condition and needs is not relevant to anything.”

–          “If the condition isn’t unpredictable, the person can never qualify.”

–          “This person can’t be terminally ill because the clinicians won’t tell them that he or she is, for reasons to do with fear of liability if wrong.”

–          “We only review once every 6 months.”

–          “Learning Disabled, and cancer, stroke and dementia patients can’t qualify. They have to pay for their own care or else be in hospital.”

–          “We can’t help it if the person is having a good day today; we have to go on what we see at the time.”

–          “This person can’t have a need to be restrained, because that’s not allowed.”

–          “We expect families to do this if the person is living at home.”

 

The legislative basis for NHS Cont Health Care (and intermediate care, incidentally!)

The duty on the Secretary of State under the 1997 National Health Service Act was consolidated into sections 1-3 of the 2006 Act, and is about to be changed for 2013 into a duty imposed on Clinical Commissioning Groups.

The duty, however, remains the same, in content: it is a duty to continue to promote a comprehensive health service designed to secure improvement in the physical and mental health of the people in England and in the diagnosis, prevention and treatment of illness.

A more specific duty is to provide or secure the provision of services in accordance with the Act, and this is made more flexible by the power to decide what services are appropriate to be provided in discharge of any duty imposed by the Act, and to do things incidental to those duties; but the provision duty is made more concrete by this section:

Section 3(1) “It is the Secretary of State’s duty to provide throughout England and Wales, to such extent as he considers necessary to meet all reasonable requirements–

  • Hospital accommodation
  • Other accommodation for the purpose of any service provided under this Act
  • Medical, dental, ophthalmic, nursing and ambulance services;
  • such other services or facilities for the prevention of illness, the care of persons suffering from illness and the aftercare of persons who have suffered from illness, as he considers are appropriate as part of the health service.

Is there a gap between health and social care?

The way the Secretary of State tells the country what he or she thinks is ‘appropriate as part of the health service’, or such as to be necessary to meet all reasonable requirements, is done through government guidance – and it is the law, therefore, that the government controls where the line is, below which a service or facility will not be free at the point of delivery (ie will NOT be an NHS service). In an ideal world, there would be no gap, between that line and the uppermost concept of what could ever be provided by social services, but the vires (or power) of a social services authority are NOT seemingly thought to be for the determination of the Secretary of State or government (there is no guidance telling councils what IS incidental or ancillary to social care) but are more a matter of judicial interpretation of the words used in the statutes governing and delineating community care law – judicial interpretation that would only be available if councils were getting challenged (by the Health Service or by service users) for refusing to provide services that they conscientiously thought were over and above what could feasibly be seen to be social care. And that is not happening, as yet – nobody wants to be the authority that gets sued for that!

The perfect example, though, of how it happened accidentally, is the case of D – a woman who wanted more funding for help with her daughter who had a tracheotomy which needed regular suctioning. She had an autistic teenager as well, and when they were all at home, life was hard. The council provided direct payments for the child to have this service bought in, and would not pay more; but the PCT/CCG which was also paying, would not raise its offer either.

The judge said that a direct payment could not be made for something that was so obviously a health service function, but that he did not have any evidence on which to find that the PCT/CCG’s offer of funding was in any way unreasonable.

So that woman was in the gap…. And no-one was liable….

So it is possible (though not politically acceptable) for a person to be in a situation where they are  asserting eligibility for something that neither health or social care authorities thinks that it is their job to provide any amount of, or for an amount of something that one or the other would be willing to fund in principle, but not to the extent demanded; but in which the authorities concerned are making careful enough decisions about their reasoning, as not to be challengeable on public law grounds, and hence there is the potential for a gap, between health and social care. The duty to co-operate that we have in the current law and which is supposed to be firmed up in the draft Care and Support Bill does not seem to be likely to make much difference here…

National Guidance on assessment principles

In the days of the Coughlan case all Health Authorities had their own local criteria, and this proved highly problematic, even after Coughlan, and led to retrospective claims still being asserted as late as September 2012, before PCT/CCGs hand over to CCGs.

However, since 2007, we have had the National Framework (as amended) supplemented by a range of other instruments, such as practice guidance, tools, letters to PCT/CCG chief executives, etc.

The 2009 update of the National Framework and the 2010 practice guidance are effectively where one finds what the Secretary of State deems it to be necessary to pay for, to meet all reasonable requirements and/or to be appropriately provided as part of the Health Service

Other instruments

  • The Delayed Discharges and the Responsibilities Directions (not Regulations, please note)
  • The decision support tool
  • The checklist
  • The fast tracking procedure
  • The single band of nursing needs contribution
  • The ADASS/LGA advice
  • The Refunds and Redress Guidance
  • The ‘deadline for retrospective claims to deserve assessment letter’ to Chief Executives

Overview of the government guidance:

  • NHS health care can be provided in any setting – any care home, independent hospitals, and in people’s own homes.
  • Full NHS health care funding is given on the basis of the person’s being assessed and acknowledged as having ‘a primary health need’.
  • ‘Primary health need’ is shorthand for a mixture of nature, intensity, complexity and unpredictability of needs – the criteria from the Coughlan case, (but reinterpreted by the guidance, as it is acceptable under the legal framework, which does give the decision on the scope of the health services, to the Secretary of State and ultimately in the future CCGs, acting UNDER the Secretary of State’s guidance).
  • Assessing for this requires scrutiny of ALL the person’s relevant needs, and these are not merely whatever is not a Funded Nursing Care need, nor whatever are merely the ‘health  care needs’ of the person: the social and personal care needs have to be taken into account as well, if related to illness, accident or disability.
  • There is a limit to what an LA can lawfully provide in a care home – it is only input that is ancillary or incidental to social care, and of the nature that an LA can reasonably be expected to provide as social care.
  • There could be, but there should NOT be, a gap between the two in practice, and there is also overlap in relation to functions which both organisations have been given, and where there is no guidance as to who should provide what.
  • Nobody should unilaterally withdraw from funding a person just because there’s a dispute about proper responsibility. However, the PCT/CCG is the decision-maker and can cease to fund, pending an appeal or review. (Very few dare to as yet; but it remains to be seen what will happen when CCGs are in charge.) – they should refund retrospectively when the outcome if finally known.
  • NHS and LAs ‘MUST’ have a robust local agreement for how to resolve disputes – this is still not honoured in many areas, in practice, nor sometimes, even in terms of a written agreement.
  • Refunds guidance in cases of delay or changes of decision about a person’s status suggests that a PCT/CCG must refund the gross cost paid out by the council or the privately paying client, during a period when a review was undecided, if the result is that the person acquires eligibility at the end.
  • The concept of continuity can count towards qualifying, as an aspect of intensity (this doesn’t make semantic sense, but this over-arching factor is the one where the long term-edness of the person’s need, has been hidden as a relevant factor).
  • A ‘managed’ need is still a health need – if paid for, one has to consider what its removal would do, and if managed by input not being paid for, its absence or cessation.
  • The NHS can pay for input that is in the nature of personal care, and MUST do so when the person qualifies for continuing health care eligibility.
  • The NHS can pay for health care input into care homes even when a person has no eligibility for full funding, and is already getting a nursing needs contribution. This is a jointly funded package – i.e. a split package, with two contracts, unless the LA is acting as the NHS’s purchasing agent or delegate and one document is used.
  • The LA may still care manage and pay for some valuable input for people despite full NHS funding eligibility if they are in their own homes, like DFGs, housekeeping, carers’ services etc.
  • One can have full NHS care as an end of life case if one has a rapidly deteriorating condition in a terminal phase – or even before then, if you qualify under the DST – but there is ambiguity around whether one must be manifesting increased dependency or not, and this is exploited by some PCT/CCGs if the current provider is afraid to say that they can’t cope within existing resources, for fear of losing the client….
  • The framework applies (for the first time, explicitly), at least in theory, to the mental health client group. But not to s117 clients or s17 clients outside of a hospital.
  • It can cover learning disability clients’ packages, but not those for children, meaning that transition is harder than it needs to be.
  • There is no such thing (yet) as a Direct Payment or individual budget for continuing health care – other than pilot ones. A managed Health Budget is just a fashionable name for a package commissioned by the NHS, albeit much more person-centred, after consultation with the patient.

 

What the guidance says is being assessed for, when a person is to be put through the DST: NF 15

“Primary legislation governing the health service does not use the expressions ‘continuing care’, ‘NHS continuing healthcare’ or ‘primary health need’.

The Secretary of State is under a duty to provide services for ‘the care of persons suffering from illness and the after-care of persons who have suffered from illness’2 throughout England, to whatever extent he or she considers necessary to meet all reasonable requirements.”

The little footnote mentioned, (‘2’) says this:

2 ‘Illness’ is defined in the NHS Act 2006 as including any injury or disability requiring medical or dental treatment or nursing. [not, please note,  registered nursing care under s49 H&SCA].

 

What is the difference between a healthcare need and a social care need?

The guidance says this:

“Whilst there is not a legal definition of a healthcare need (in the context of NHS continuing healthcare), in general terms it can be said that such a need is one related to the treatment, control or prevention of a disease, illness, injury or disability, and the care or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional).

“In general terms (not a legal definition) it can be said that a social care need is one that is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society, protecting them in vulnerable situations, helping them to manage complex relationships and (in some circumstances) accessing a care home or other supported accommodation.

Social care needs are directly related to the type of welfare services that LAs have a duty or power to provide. These include, but are not limited to: social work services; advice; support; practical assistance in the home; assistance with equipment and home adaptations; visiting and sitting services; provision of meals; facilities for occupational, social, cultural and recreational activities  outside the home; assistance to take advantage of educational facilities; and assistance in finding  accommodation (e.g. a care home), etc.

“PCT/CCGs should be mindful that where a person is eligible for NHS continuing healthcare the NHS is responsible for meeting their assessed health and social care needs.

 

What is all this about well-managed needs still needing to be counted on reviews of status?

In social care terms, a met need is ineligible for provision – because social care is a last resort, provided only when it is necessary. Ie if it is a met need, it is a clearly an assessed ‘need’, and it would have, or could have to be met by social care services, but if it is met for free, by a family member, it is not an eligible assessed need.

In CHC law, the test for funding is not whether NHS care is necessary, but whether it is deserved, by reference to an overall profile – so a met need is still a relevant need for weighing up the funding status of the person – even if it is then, by agreement, a need that is met, for free, by a relative, for the moment. So it might be that it does not need to be funded, but it cannot be ignored, in terms of continuing eligibility.

Turning to the National Framework on this subject, its advice is as follows:

29        Needs should not be marginalised because they are successfully managed. Well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need will this have a bearing on NHS continuing healthcare eligibility. However, there are different ways of reflecting this principle when completing the DST. For example, where psychological or similar interventions are successfully addressing behavioural issues, consideration should be given as to the present-day need if that support were withdrawn or no longer available and this should be reflected in the Behaviour domain.

30        It is not intended that this principle should be applied in such a way that well- controlled physical health conditions should be recorded as if the medication support was not present. Where needs are being managed via medication (whether for behaviour or for physical health needs), it may be more appropriate to reflect this in the Drug Therapies and Medication domain.

 

Directions and other sources of law – relevant to Checklisting for a full assessment

Click here for the 2009 Directions on what should happen before a person leaves hospital.

The Delayed Discharge directions (the actual regulations from 2003 are different) seem to require the NHS to do screening and/or full assessments for NHS health care before presenting s2 ‘fit for discharge’ certificates to the LA. But not really…one has to read them very carefully!

The requirement is as follows:

(2) The NHS body must take reasonable steps to ensure that an assessment of eligibility for NHS Continuing Healthcare is carried out in all cases where it appears to the body that the patient may have a need for such care, in consultation, where it considers it appropriate, with the social services authority appearing to the NHS body to be the authority in whose area the patient is ordinarily resident.

(4) If an NHS body wishes to use an initial screening process to decide whether to undertake an assessment of a patient’s eligibility for NHS Continuing Healthcare it must—

(a) complete and use the NHS Continuing Healthcare Checklist issued by the Secretary of State (as amended from time to time) to inform that decision;

(b) inform the patient (or someone acting on that person’s behalf) in writing of the decision as to whether to carry out an assessment of that patient’s eligibility for NHS Continuing Healthcare; and

(c) make a record of the decision in the patient’s notes.

 

(8) Paragraphs (2) to (6) do not apply where an appropriate clinician decides that—

(a) a patient has a primary health need arising from a rapidly deteriorating condition; and

(b) the condition may be entering a terminal phase,

and has completed a Fast Track Pathway Tool stating reasons for the decision.

This is not an obligation to assess before discharging, or even to begin to assess; it is an obligation to decide before presenting a fit for discharge decision to any council, whether an assessment is necessary. That decision is supposed to turn on its appearing to the NHS (the PCT/CCG here) that the person may have a need for such care, and if a screening process is to be used to determine that question, then it must be the checklist provided by government. That means that the following legal positions are all consistent with these directions and not unlawful, although very problematic for councils:

  • It is acceptable to let or even encourage people discharge themselves from hospital without reference to social services, or their entitlement or potential entitlement to free NHS health care status, if they or their relatives acting in their best interests say that they are not interested in a social services assessment or appear to be willing to self-fund – there will be no fitness for discharge certificate in play at all, for such people.
  • It is acceptable to make the decision in a hospital that someone does not need to be assessed, without using the check list, so long as no other screening tool is used. Hospitals are often happy to go by reference to a clinician’s decision, it seems, although goodness knows how that clinician is to be held accountable for a ‘No Need to Bother to Assess HER’ sort of a view…the guidance says that councils and NHS bodies will agree local arrangements for how to decide whether someone has to be assessed, and suggests automatic referral to the DST process would be legal, for those needing care in a nursing home – but without suggesting what would be necessary for anyone else, or what would NOT be acceptable – for instance, either because it amounted to some other screening tool other than the checklist, or was clearly too rigid or irrational a line to take….
  • A person can be medically fit for discharge and discharged, without being assessed for their status, if no-one has thought even to apply the checklist process to them. And in some London hospitals for instance, they don’t ‘like’ using checklists, apparently; so how are they making these decisions at all??
  • A person who has been check listed, positively, does not need to actually have had their full DST done or completed, before a s2 is served. The obligation is only to decide whether they deserve or need an assessment ie whether there may be a need for such care….so they can be discharged, and become eligible for community care, because no decision that they are the responsibility of the NHS has formally been taken, to the contrary. But the guidance suggests that any interim service or bed, in such circumstances, should be NHS funded.

 

Click here for the Responsibilities Directions 2009 for the equivalent obligation for people who are not in hospital but who are in the community.

The Responsibilities Directions say decisions about who to assess should be made by the PCT/CCG for all PCT/CCGs even where the person is not in hospital at the time.

(2) Subject to paragraph (12), a Primary Care Trust must take reasonable steps to ensure that an assessment of eligibility for NHS Continuing Healthcare is carried out in all cases where it appears to the Trust that—

(a) there may be a need for such care; or

(b) an individual who is receiving NHS Continuing Healthcare may no longer be eligible for such care.

(3) If an assessment for NHS Continuing Healthcare is required under paragraph (2)(a), the Primary Care Trust must ensure that it is carried out before any assessment pursuant to direction 2(1) of the National Health Service (Nursing Care in Residential Accommodation) (England) Directions 2007

(4) If a Primary Care Trust wishes to use an initial screening process to decide whether to undertake an assessment of a person’s eligibility for NHS Continuing Healthcare it must—

(a) complete and use the NHS Continuing Healthcare Checklist issued by the Secretary of State (as amended from time to time) to inform that decision;

(b) inform that person (or someone acting on that person’s behalf) in writing of the decision as to whether to carry out an assessment of that person’s eligibility for NHS Continuing Healthcare; and

(c) make a record of the decision.

but there is no ‘D day’, such as the threat of a fine for a delayed discharge by social services, to crank up the pressure to make sure social services gets the NHS to abide by this requirement.

Checklisting can be done by social work staff, in either setting, but in a hospital team working on discharge, the co-ordinator heading the team will invariably be a nurse, it is thought.

Disputes about the checklisting process can leave a person floundering long term in a hospital bed, without agreement as to whether they are waiting for a social care assessment for a care home, or a DST assessment for free NHS healthcare status. This cannot be good for anyone’s well-being, for performance targets or the rule of law.

The nationally applicable guidance in para 57 of the National Framework even makes it possible that someone may be deliberately removed from a hospital bed for a period of stabilisation (at the cost of the NHS, mind you) in a non-acute setting, before the DST process is commenced.   So to say that people would find it easy to know what their position is at any given time, is not likely to be accurate.

Do the new ‘FAQs’ help much?

The new FAQs – 2011 – from the DH do not take this ambiguity much further, for the obvious reason that the DH knows that it is not practicable to DST every single person leaving hospital or deteriorating in the community, and doesn’t want to say what should be used to make the decision who does, if not via the checklist.

3.4 Is use of the checklist mandatory?

  • Directions state that if a PCT/CCG is to use any screening tool that tool must be the NHS Continuing Healthcare Checklist. PCT/CCGs may, if they wish, directly move to a full MDT assessment for an individual without using a Checklist. However, PCT/CCGs cannot use a different tool or method for screening for NHS CHC.
  • Directions require PCT/CCGs to take reasonable steps to ensure that individuals are assessed for NHS continuing healthcare in all cases where it appears to them that there may be a need for such care.
  • For more information see para 6.2 of the Practice Guidance….”

New FAQ 3.5 says this – baldly, without elaboration:

  • If a local area does not use the Checklist either generally or in individual cases then a full MDT CHC assessment should take place before delayed discharge notices are issued.

This is simply inconsistent with the requirement that the person should be assessed in the most sensible place, in terms of their well-being, and that is hardly ever going to be a hospital bed!

Practice Guidance in March 2010 – para 6.2

“No, there will be many situations where it is not necessary to complete a Checklist. However, the Responsibilities Directions require PCT/CCGs to take reasonable steps to ensure that individuals are assessed for NHS continuing healthcare in all cases where it appears to them that there may be a need for such care. Local joint health and social care processes should be in place to identify individuals for whom it may be appropriate to complete a Checklist, including individuals in community settings within the context of the above duty.

The Responsibilities Directions state that the Checklist is the only screening tool that can be used. PCT/CCGs can choose not to use a screening tool, either generally or in individual cases, and instead directly use the DST but alternative screening tools cannot be used. For example, a PCT/CCG and LA might agree that everyone who moves from an acute hospital setting into a care home with nursing should automatically have a full DST completed without the need to complete a Checklist.

 

How else could the PCT/CCG discharge its obligation to decide whether a person may be in need of NHS health care status and services?

In legal terms, for use of a clinician’s judgment, to be possible, and yet not constitute use a non-checklist type of an initial screening process, the clinician would have to be acting as the formal delegate of the PCT/CCG, and there is no power for PCT/CCGs to delegate their functions lawfully in that manner, under the NHS framework, that the site proprietor is aware of…

6.9 Practice Guidance: what evidence is required for completion of the Checklist?

“The Checklist is intended to be relatively quick and straightforward to complete. In the spirit of this, it is not necessary to submit detailed evidence along with the completed Checklist.

However, the Checklist asks practitioners to record references to evidence that they have used to support the statements selected in each domain. This could, for example, be by indicating that specific evidence for a given domain was contained within the inpatient nursing notes on a stated date. This will enable evidence to be readily obtained for the purposes of the MDT if the person requires full consideration for NHS continuing healthcare.  A ‘rationale for decision’ box is also included in the Checklist that invites practitioners to give an overall explanation of why the individual should be referred for full assessment of NHS continuing healthcare eligibility. Where referral is based on the numbers of As, Bs and Cs scored, a statement to this effect will often be sufficient.

However, an individual may be referred for full assessment despite the fact that the completed domains suggest their needs do not meet the levels required, and in this case a fuller explanation will be important.”

The duty to give reasons for PCT/CCG reaction to the checklist – the leverage for better checklisting, it is suggested.

“NF 66. Whatever the outcome of the Checklist – whether or not a referral for a full assessment for NHS continuing healthcare eligibility is considered necessary – the decision (including the reasons why the decision was reached) should be communicated clearly and in writing to the individual and (where appropriate) their representative, as soon as is reasonably practicable.

Where the outcome is not to proceed to full assessment of eligibility, the written decision should also contain details of the individual’s right to ask the PCT/CCG to reconsider the decision. The PCT/CCG should give such requests due consideration, taking account of all the information available, including additional information from the individual or carer. A clear and written response should be given to the individual and (where appropriate) their representative, as soon as is reasonably practicable. The response should also give details of the individual’s rights under the NHS complaints procedure.”

Site proprietor’s suggestion:

One way of explaining why low threshold screening for assessment is necessary, and beneficial, in terms that will be understood by the NHS, and in terms of private law liability in negligence – springs to mind.

When one is in the care of the NHS, and owed an ordinary private law duty of care in relation to harm, one ought not to be discharged from hospital, at least not without negligence, before a professional has made a clinical decision not just as to whether the person can be let out of acute hospital care, responsible, but also as to what further NHS services are appropriate for the individual.

That might be medication, intermediate care, RNCC, primary care/district nursing, medical equipment, out-patient appointments, or long term rehabilitation – OR of course, eligibility for funded NHS care, albeit outside of hospital. So doing a checklist properly is at least evidence that this has been given some thought…. The justification for this approach being a good one can be found in the NF itself:

 

Para 57 of the National Framework says as follows:

“In order to ensure that unnecessary stays on acute wards are avoided, there should be consideration of whether the provision of further NHS-funded services is appropriate. This might include therapy and/or rehabilitation, if that could make a difference to the potential of the individual in the following few months. It [ie NHS funding for this] might also include intermediate care or an interim package of support in an individual’s own home or in a care home. In such situations, assessment of eligibility for NHS continuing healthcare should usually be deferred until an accurate assessment of future needs can be made. The interim services (or appropriate alternative interim services if needs change) should continue in place until the determination of eligibility for NHS continuing healthcare has taken place.”

This is like using re-ablement as a step on the way to assessment of needs for community care services – it makes perfect sense and enables the minimisation of needs that would trigger CHC status, in the long term. This paragraph builds on the Grogan concept that once you are in the hands of the NHS in a hospital, their duty continues until they have made any necessary decision required (by guidance, for instance) as to whether they owe you any further duties or not, and is a very useful one for patients and councils to remember!

 

Can a PCT/CCG refuse to accept a completed Fast Track Pathway Tool?

No, the Delayed Discharges and Responsibilities Directions make it clear that a PCT/CCG must accept and action the Fast Track Pathway Tool immediately, where the Tool has been properly completed in accordance with the criteria for the use of the Tool as explained above.

The purpose of the Tool is to ensure that the individual receives the support they need as quickly as possible without the need for a full consideration through the NHS continuing healthcare process. A PCT/CCG should not require any additional evidence to support eligibility although, as explained above, additional information to help identify the support package required can be helpful.

PCT/CCGs should not decline acceptance of a completed Fast Track Pathway Tool when the Tool states that the criteria in 5.1 are met. The individual should not experience a delay in receiving appropriate care just because a PCT/CCG questions whether the circumstances of the individual case are appropriate for use of the Fast Track Pathway Tool, i.e. whether an individual’s end of life needs are such that the Fast Track  Pathway Tool should have been used.

However, exceptionally….

… there may be circumstances where PCT/CCGs receive a completed tool which appears to show that the individual’s condition is not related to the above criteria at all, for example if a completed Fast Track Pathway Tool states that the person has mental health needs and challenging behaviour but makes no reference to them having a rapidly deteriorating condition which may be entering a terminal phase. In these circumstances the PCT/CCG should urgently ask the relevant clinician to clarify the nature of the person’s needs and the reason for the use of the Fast Track Pathway Tool. Where it then becomes clear that the use of the Fast Track Pathway Tool was not appropriate, the clinician should be asked to submit a completed Checklist for consideration through the wider eligibility process.

 

The decision support tool – is explicitly not part of the National Framework and not an assessment tool in its own right, but a means by which assessments should be moderated for the purposes of deciding eligibility

  • Divides up areas of need into 11 domains and gives descriptors, like FACS descriptors, that apply nationally.
  • Descriptions of a priority need, in any one domain, as opposed to a severe or a high or a moderate or low need are given.
  • One priority is enough to qualify. Two severes are enough to qualify. But beyond that, there is no indication of what number of highs, moderates, or lows, in conjunction with each other, would make for a strong case on eligibility!
  • Some domains, even at their most extreme extent of description, only go up to High, in the first place – e.g. psychological needs, continence and communication (these areas involve services traditionally seen as personal care services, unsurprisingly)
  • Severe only domains are cognition, mobility and nutrition and tissue viability (these are traditionally, health care responsibilities but which need not be….
  • The priority ones are behaviour, breathing, medication and altered states of consciousness (ie traditional and clear NHS responsibilities).

 

75   Completion of the tool should result in an overall picture of the individual’s needs that captures their nature, and their complexity, intensity and/or unpredictability – and thus the quality and/or quality (including continuity) of care required to meet the individual’s needs. Figure 2 indicates how the domains in the Decision support Tool can illustrate the complexity, intensity and unpredictability of needs. The overall picture, and the descriptors within the domains themselves, also relate to the nature of needs.

Nature

‘Nature’ is about the characteristics of both the individual’s needs and the interventions required to meet those needs.

Questions that may help to consider this include:

  • How does the individual or the practitioner describe the needs (rather than the medical condition leading to them)? What adjectives do they use?
  • What is the impact of the need on overall health and well-being?
  • What types of interventions are required to meet the need?
  • Is there particular knowledge/skill/training required to anticipate and address the need?
  • Could anyone do it without specific training?
  • Is the individual’s condition deteriorating/improving?
  • What would happen if these needs were not met in a timely way?

 

‘Intensity’ is about the quantity, severity and continuity of needs.

Questions that may help to consider this include:

  • How severe is this need?
  • How often is each intervention required?
  • For how long is each intervention required?
  • How many carers/care workers are required at any one time to meet the needs?
  • Does the care relate to needs over several domains?

 

Complexity and unpredictability

‘Complexity’ is about the level of skill/knowledge required to address an individual need or the range of needs and the interface between two or more needs.

 

Questions that may help to consider this include:

  • How difficult is it to manage the need(s)?
  • How problematic is it to alleviate the needs and symptoms?
  • Are the needs interrelated?
  • Do they impact on each other to make the needs even more difficult to address?
  • How much knowledge is required to address the need(s)?
  • How much skill is required to address the need(s)?
  • How does the individual’s response to their condition make it more difficult to provide appropriate support?

 

‘Unpredictability’ is about the degree to which needs fluctuate and thereby create challenges in managing them.

Questions that may help to consider this include:

  • Is the individual or those who support him/her able to anticipate when the need(s) might arise?
  • Does the level of need often change?
  • Does the level of support often have to change at short notice?
  • Is the condition unstable?
  • What happens if the need isn’t addressed when it arises?
  • How significant are the consequences?
  • To what extent is professional knowledge/skill required to respond spontaneously and appropriately?
  • What level of monitoring/review is required?

 

An interesting question: is a need for restraint or even deprivation of liberty potentially an indicator of NHS responsibility?

…The DH’s decision support tool says funding should follow these profiles and this pattern:

Clear Recommendation in favour of full funding

  • A level of priority, in one of the four domains that carry it.
  • A total of two or more incidences of identified severe needs.

 

Potential Eligibility (and ADASS would say ‘shared care’, even if not full funding, on this profile)

  • One domain recorded as severe, together with needs in a number of other areas.
  • A number of domains with high and/or moderate needs.

 

What about the assessment of the needs of those with complex and challenging needs then against the domains of Behaviour, Cognition, and Emotional and Psychological needs, then? At least one of those goes up to Priority, and one to Severe. What does this mean for cases where deprivation of liberty is needed?

All about ‘behaviour’ from the DST:

Human behaviour is complex, hard to categorise, and may be difficult to manage. Challenging behaviour in this domain includes but is not limited to:

–   aggression, violence, or passive non-aggressive behaviour

–   severe disinhibition

–   intractable noisiness or restlessness

–   resistance to necessary care and treatment (this may therefore include non-concordance and non-compliance, but see note below)

–   severe fluctuations in mental state

–   extreme frustration associated with communication difficulties

–   inappropriate interference with others.

 

Priority “Challenging” behaviour of severity and/or frequency that presents an immediate and serious risk to self and/or others. The risks are so serious that they require access to an urgent and skilled response at all times for safe care.

Severe “Challenging” behaviour of severity and/or frequency that poses a significant risk to self and/or others. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.

High “Challenging” behaviour that poses a predictable risk to self or others. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.

On that basis, why would anyone needing restraint or deprivation of liberty (which can only be authorised if it is agreed by the Best Interests Assessor, to be necessary and the least restrictive regime that would manage the situation) not score one priority or two severes, across those domains?

 

Potential Sources of Information/Evidence – according to the guidance

A ‘Health needs’ assessment, a ‘Nursing’ assessment, a ‘Community care’ assessment

The individual’s own views of their needs and desired outcomes, their person-centred plan

Carer’s views

Physiotherapy assessment, Behavioural assessment, Speech and Language Therapy (SALT) assessment, Occupational Therapy assessment

Care home/home support records

Current care plan

24-hour/48-hour diary indicating needs and interventions (may need to be ‘good day’ and ‘bad day’ if fluctuating needs)

GP information, Specialist medical/nursing assessments (e.g. tissue viability nurse, respiratory nurse, dementia nurse, etc.)

Falls risk assessment

Standard scales (such as the Waterlow score)

Psychiatric/community psychiatric nurse assessments

What else could be relevant?

Local assessment arrangements and processes differ around the country, though a number of models have formed the basis for assessment and care and support planning processes including the Single Assessment Process for older people, the Care Programme Approach and the Common Assessment Framework.

Person-centred plans (which were originally developed for use by people with learning disabilities, but which can be used by anyone – and are increasingly being used more widely) are not assessments. Rather, they represent the individual’s own view of their desired outcomes and support needs. As such, they can offer key evidence to be considered when completing both the assessment and the DST. Health action plans and health checks can also provide useful evidence.

 

MDT consistency

  1. a) The coordinator should gather as much information as possible from professionals involved prior to the MDT meeting taking place, including agreeing where any new/updated specialist assessments are required prior to the meeting.
  2. b) The coordinator (or someone nominated by them) should explain the role of the MDT to the individual in advance of the meeting, together with details of the ways that the individual can participate. Where an individual requests copies of the documentation to be used this should be supplied.
  3. c) Information from the process above and any additional evidence should be discussed within the MDT meeting to ensure common agreement on individual needs. Where copies of assessments are circulated to MDT members at the meeting, copies should also be made available to the individual if they are present.
  4. d) Relevant evidence (and sources) should be recorded in the text boxes preceding each of the domain levels within the DST and this information should be used to identify the level of need within that domain, having regard to the user notes of the DST. Having completed the domains …
  5. e) Depending upon local arrangements the MDT members may decide to reach the final recommendation on eligibility after the individual and their representative have left the meeting. However, the above gives clear expectations on their involvement in the wider process. If the MDT is to reach its final recommendation privately it is best practice to give the individual/representative an opportunity before they leave the meeting to state their views on what the eligibility recommendation should be in the light of the DST discussion.

 

What then?

  1. f) The MDT should then discuss, agree and record their recommendation, based on the concepts in d) above, providing a rationale which explains why the individual does or does not have a primary health need (see below for more detail on recommendations).
  2. g) The recommendation should then be presented to the PCT/CCG, who should accept this, except in exceptional circumstances. These circumstances could for example include insufficient evidence to make a recommendation or incomplete domains.
  3. h) If the PCT/CCG, exceptionally, does not accept the MDT recommendation (see 9.3 for circumstances when this can happen) it should refer the DST back to the MDT identifying the issues to be addressed. Once this has been completed the DST should be re-presented to the PCT/CCG who should accept the recommendation (except in exceptional circumstances).
  4. i) The decision should be communicated in writing as soon as possible in an accessible format and language to the individual or their representative so that it is meaningful to them. They should also be sent a copy of the DST and information on how to ask for a review of the decision if the individual is dissatisfied with the outcome.

 

What does the MDT’s recommendation need to cover?

The recommendation should:

  1. a) provide a summary of the individual’s needs in the light of the identified domain levels and the information underlying these. This should include the individual’s own view of their needs.
  2. b) provide statements about the nature, intensity, complexity and unpredictability of the individual’s needs, bearing in mind the explanation of these concepts provided in section 4 of the guidance.
  3. c) give an explanation of how the needs in any one domain may interrelate with another to create additional complexity, intensity or unpredictability
  4. d) in the light of the above, give a recommendation as to whether or not the individual has a primary health need (with reference to section 4 of this guidance).

A copy of the completed assessment, DST and other documents should be forwarded to the PCT/CCG.

 

What about where the practitioners can’t agree? The guidance says this:

22 – The descriptions may not always exactly describe the individual’s needs so if there is difficulty in placing their needs in one or other of the levels, the MDT should use professional judgement based on consideration of all the evidence to decide the most appropriate level.

If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion.

Please do not score an individual as being between levels. It is important that differences of opinion on the appropriate level are based on the evidence available and not on presuppositions about a person’s need or generalised assumptions about the effects of a particular condition.

 

Decision Making and Panels

Whilst the Framework does not require the PCT/CCG and LA to have a panel arrangement, many areas do use panels as part of the process. However, arrangements should be in place to ensure that (so far as is reasonably practicable) the LA’s views regarding needs and eligibility are obtained before decisions are made regarding eligibility for NHS continuing healthcare.

The National Framework states that ‘only in exceptional circumstances, and for clearly articulated reasons, should the multi-disciplinary team’s Recommendation not be followed (paragraph 80).

It is not normally acceptable to take a Panel decision in the absence of a consensus based recommendation:

“PCT/CCGs should not make decisions in the absence of recommendations on eligibility from the multidisciplinary team, except where exceptional circumstances require an urgent decision to be made.”

Warnings from the guidance

It should be remembered that, whilst the recommendation should make reference to all four concepts of nature, intensity, complexity and unpredictability, anyone of these could on their own or in Combination with others be sufficient to indicate a primary health need.

Although the core responsibility of MDTs is to make a recommendation on eligibility for NHS continuing healthcare, the recommendation could also indicate any particular factors to be considered when commissioning/securing the placement or care/support package required to meet the individual’s needs (whether or not the individual has a primary health need).

Where the outcomes of the individual care domains do not obviously indicate a primary health need (e.g. a priority level in one domain or severe levels in two domains being found), but the MDT is using professional judgement to recommend that the individual does nonetheless have a primary health need, it is important to ensure that the rationale for this is clear in the recommendation.

Where an individual has a deteriorating condition, practitioners need to take this into account in reaching their conclusion on primary health need, considering the approaches set out in paragraph29 of the Framework and being mindful of how that condition and the associated needs are going to progress before the next planned review.

Where an individual has a deteriorating condition but eligibility for NHS continuing healthcare is not presently recommended, consideration should be given to setting an early review date. This should be clearly highlighted in the recommendation to the PCT/CCG who should ensure that the review is arranged at the appropriate time.

 

Split packages for those who do not qualify

For people who do not have a primary health need, woolly though the notion is, they could well have scored one severe, and 10 highs, for instance. What should they then get? If they were going to a nursing home, and getting a small contribution to their overall cost from the NHS by way of FNC, would that be fair – ie for them to be chargeable for the whole of the rest of the package, or for the LA to be chargeable, if the person’s means did not allow for a personal charge beyond income and benefits? No, it would not. And it would be even more invidious if the person was NOT going to be cared for in a nursing home, but instead was going to live at home, or in tenanted specialist accommodation….

 

The proof that it’s always been lawful to split a package, even if contrary to DH policy

See para 43 of the Coughlan decision (prior to anyone dreaming up registered nursing needs as a relevant concept….):

“43. [There are] two categories of person who although receiving nursing care while in a nursing home, are still entitled to receive the care at the expense of the NHS. First there are those who because of the scale of their health needs, should be regarded as wholly the responsibility of a health authority. Secondly, there are those whose nursing services in general [and whose accommodation, board, and personal and social care] can be regarded as being the responsibility of the LA but whose additional requirements are the responsibility of the NHS.

  1. [for this second category]…. Either a proper division needs to be drawn (we are not saying that it has to be exact) or the Health Service has to take the whole responsibility.”

 

How to commission a joint package – from the commissioning chapter in the guidance

The respective powers and responsibilities of each organisation should be identified by considering the needs of the individual. Where there are overlapping powers and responsibilities, a flexible, partnership-based approach should be adopted based on the most appropriate organisation to meet the specific need.

Although the LA can provide some healthcare services (within legal limitations of LA social care powers) the assessment and DST may have identified some healthcare needs that are not of a nature that the LA could solely meet, or that are beyond the powers of the LA to solely meet, and therefore these may be the responsibility of the NHS to provide.

In a joint package of care the PCT/CCG and the LA can each contribute to the package by:

  1. a)    delivering direct services to the individual
  2. b)    commissioning care/services to support the care package, or
  3. c)    transferring funding between their respective organisations (where the needs are ones that the NHS and the LA both have the power to meet – this is genuinely jointly funded, as opposed to split funded – site proprietor’s comment).

PCT/CCGs should be mindful that their responsibility under NHS continuing healthcare involves meeting both health and social care needs based on those identified through the MDT assessment. Therefore, whilst LAs and PCT/CCGs have overlapping powers, in determining responsibilities in an individual case,

PCT/CCGs should first consider whether the responsibility to meet a specific need lies with them as part of their NHS continuing healthcare responsibilities.

 

As well as SPLIT packages, there are also ‘grey area’ packages……where either agency COULD be legally responsible for the type of care that needs to be put in

The guidance says this: “Some health needs fall within the powers of both PCT/CCGs and LAs to meet.

However where:

  1. i) an LA is providing services during the period in which an NHC CHC eligibility decision is awaited;
  2. ii) it is identified [it does not say by whom!] that the individual has some health needs that are not within the power of an LA to meet (regardless of the eventual outcome of the NHS CHC eligibility decision); and

iii) those health needs need to be met before the decision on eligibility is made, the PCT/CCG should consider its responsibilities under section 3 of the 2006 Act [i.e. make a contract] to provide such health services to such extent as it considers necessary to meet all reasonable requirements. The PCT/CCG should therefore consider whether the individual’s health needs are such that it would be appropriate to make services available to help meet them in advance of the NHS CHC eligibility decision.”
Where an individual is not already in receipt of an ongoing care package from the LA or PCT/CCG (or both), they may have urgent health or social care needs which need to be met during the period in which the NHS CHC eligibility decision is awaited, for example because previous private arrangements are no longer sustainable or there were not previously any care needs requiring support.

Where the individual appears to be in need of community care services, the LA should assess the individual’s eligibility for these under section 47 of the NHS and Community Care Act 1990 (‘the 1990 Act’), including consideration of whether there is a need to provide services urgently in advance of such assessment, using their powers under section 47(5) of the 1990 Act.

If, in carrying out an assessment, the LA identifies that there may be a need for health services under the 2006 Act, the LA should invite the PCT/CCG to participate in the assessment4. The PCT/CCG should consider and meet its responsibilities under section 3 of the 2006 Act pending the NHS CHC eligibility decision, as explained above. The LA and PCT/CCG should jointly agree actions to be taken in the light of their statutory responsibilities until the outcome of the NHS CHC decision-making process is known. No individual should be left without appropriate support because statutory bodies are unable to agree on respective responsibilities.

[but – comment from the site provider here: what if the NHS says no, and the LA says ‘we can’t….’? – that is why there is the possibility of an impasse or a gap, and the law provides no current answer to this predicament in which a person might find themselves.]

 

Consent to assessment – this is what the guidance says:

“As with any examination or treatment, the individual’s informed consent should be obtained before the start of the process to determine eligibility for NHS continuing healthcare. It should be made explicit to the individual whether their consent is being sought for a specific aspect of the eligibility consideration process (e.g. completion of the Checklist) or for the full process. It should also be noted that individuals may withdraw their consent at any time in the process.

If an individual does not consent to assessment of eligibility for NHS continuing healthcare, the potential effect this will have on the ability of the NHS and the LA to provide appropriate services should be carefully explained to them. The fact that an individual declines to be considered for NHS continuing healthcare does not, in itself, mean that an LA has an additional responsibility to meet their needs, over and above the responsibility it would have had if consent had been given.

Where there are concerns that an individual may have significant ongoing needs, and that the level of appropriate support could be affected by their decision not to give consent, the appropriate way forward should be considered jointly by the PCT/CCG and the LA, taking account of each organisation’s legal powers and duties. It may be appropriate for the organisations involved to seek legal advice.”

Trenchant criticism coming up from the site proprietor here: this is truly disingenuous and problematic for councils, in the view of the site proprietor: it does not state what effect it will have on the ability of the NHS or the LA to provide appropriate services, at all! Those organisations’ obligations turn upon the appearance of need, not consent to provision of services.

  • People’s rights to services do not depend on them consenting to assessment for eligibility!
  • An assessment does not ‘as with any examination or treatment’ necessitate the touching of, or interference with the body or any exploration inside a person’s body or the administration of medication to anyone’s body, and thus does NOT require consent to make the action lawful…
  • We do not ask for people’s consent to re-assessment when we think that they are no longer eligible, do we, in the NHS?
  • We do not ask people to consent to assessment for treatment under the Mental Health Act, do we?
  • Nor for community care assessments – we accept that if they don’t consent, they won’t be very likely to co-operate, but for people’s own good, recognising that they may not have mental capacity, and for the good of others, where the person’s behaviour affects others, we assess them anyway, from a distance and even through a wall or door, if there is no other option…!

 

This section is therefore the clearest possible example of wrong legal thinking in the guidance, in the site proprietor’s view.

It is probably only there because an effective MDT going through the DST process is going to involve information sharing, and without consent from the capacitated, that would be a breach of data protection and confidentiality provisions – except that even there, of course, the exception in the Act to the effect that consent is not necessary where the information sharing is necessary for the performance of a statutory function, clearly applies.

So no points for clear thinking here, then, and conspiracy theorists amongst us will (not surprisingly) surmise that it is all deliberate, to minimise the number of people being forced to lose their direct payments through qualifying for CHC…even though that means councils continue to pay the price for providing what should be NHS funded….

The government can see the difficulty in its own position of course, in relation those who lack mental capacity:

Capacity

  1. If there is a concern that the individual may not have capacity to give consent, this should be determined in accordance with the Mental Capacity Act 2005 and the associated code of practice. PCT/CCGs should be particularly aware of the five principles of the Act:

A presumption of capacity: Every adult has the right to make his or her own decisions and must be presumed to have capacity to do so, unless it is proved otherwise.

Individuals being supported to make their own decisions: A person must be given all practicable help before anyone treats them as not being able to make their own decisions.

Unwise decisions: Just because an individual makes what might be seen as an unwise decision, they should not be treated as lacking capacity to make that decision.

Best interests: An act done or decision made under the Act for or on behalf of a person who lacks capacity must be in their best interests.

Least restrictive option: Anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedoms.

If the person lacks the mental capacity either to refuse or to consent, a ‘best interests’ decision should be taken (and recorded) as to whether or not to proceed with assessment of eligibility for NHS continuing healthcare.

Those making this decision should bear in mind the expectation that everyone who is potentially eligible for NHS continuing healthcare should have the opportunity to be considered for eligibility.

A third party cannot give or refuse consent for an assessment of eligibility for NHS continuing healthcare on behalf of a person who lacks capacity, unless they have a valid and applicable Lasting Power of Attorney (Welfare) or they have been appointed a Welfare Deputy by the Court of Protection.

 

  1. Where a ‘best interests’ decision needs to be made, the PCT/CCG must consult with any relevant third party who has a genuine interest in the person’s welfare. This will normally include family and friends.

The site proprietor does not have any objection to the wording of this section, but would ask, rhetorically, whether there are any circumstances that anyone can think of where to avoid giving a person an assessment of their legal rights, based on their profile of need, to totally free care, would conceivably be in a person’s best interests?

And if there are such situations – where, for instance, it would mean that they would not be able to retain a direct payment (or presumably, where their current Suitable Person was not able to retain a direct payment for spending on that person’s needs) what that is supposed to mean for the liability of the social care organisation which is currently funding the direct payments – if the services now needed are apparently well above the concept of what is ancillary or incidental to social care services?

 

Relatives’ input into the assessment process

National Guidance requires the individual to be able to contribute towards the recommendation. This stops short of being involved at the discussion at the very end of the DST process as to the agreed recommendation of the MDT. It is not unlawful to exclude relatives and supporters from the recommendation debate between the professionals.

However, the relatives’ comments as to what they think the recommendation should be, should be obtained and engaged with. Guidance states any individual is entitled to nominate an advocate to represent their views or speak on their behalf during the DST and this could be a family member, a friend, a local advocacy service or someone independent who has an advocacy role.

If the individual and/or their representative choose not to be present at the part of the meeting where the MDT agrees the recommendation regarding primary health need, the outcome should be communicated to them as soon as possible and their response sought.

 

Advocacy

The Mental Capacity Act 2005 created a new statutory service: the Independent Mental Capacity Advocate (IMCA) service. Its purpose is to help vulnerable people who lack capacity and who are facing important decisions made by the NHS and LAs about serious medical treatment or change of residence – for example, moving to a hospital or care home. NHS bodies and LAs have a duty under the Act to instruct and consult the IMCA if those concerned are people who lack capacity in relation to the relevant decision and who have no family or friends that are available (or appropriate) for consultation on their behalf.

Even if an individual does not meet the criteria for use of the IMCA service, and regardless of whether or not they lack capacity, they may wish to be supported by an advocate. PCT/CCGs should ensure that individuals are made aware of local advocacy and other services that may be able to offer advice and support, and should also consider whether any strategic action is needed to ensure that adequate advocacy services are available to support those who are eligible and potentially eligible for NHS continuing healthcare. In addition, any person may choose to have a family member or other person (who should operate independently of LAs and NHS bodies) to act as an advocate on their behalf.

When is it appropriate to involve an Independent Mental Capacity Advocate (IMCA)?

The Framework reminds NHS bodies and LAs that they have a duty under the Mental Capacity Act 2005 to instruct and consult an IMCA if an individual lacks capacity in relation to particular decisions in their life and has no family or friends that are available (or appropriate) for consultation on their behalf. Where there is no one else appropriate to consult with (other than paid workers) an IMCA should be appointed where the decision relates to serious medical treatment (as defined in the Mental Capacity Act), hospital admission for longer than 28 days, a permanent change in the person’s current residence [to institutional care] or a temporary one that will last more than eight weeks.

In the context of an assessment for NHS continuing healthcare eligibility an IMCA should be appointed as soon as a preliminary view is taken that the outcome of the assessment is likely to result in the statutory criteria for an IMCA being met. In most cases this will be because the preliminary view is that a permanent change in residence is likely (e.g. a move to a care home) – irrespective of who subsequently accepts funding responsibility. Whilst an IMCA can be appointed by either a decision-maker in an LA or the NHS, where full consideration for eligibility for NHS continuing healthcare is being undertaken it would be best practice for the PCT/CCG to appoint the IMCA. Where an IMCA has been appointed a permanent decision should not be made on the issue in question until the IMCA report has been submitted and considered by the decision-maker.

Legal representation during the process – the guidance says as follows:

  • Individuals are free to choose whether they wish to have an advocate present, and to choose who this advocate is.  [The subtext here is that there is no funding for one and it’s a matter of choice for each individual].
  • The eligibility process is focused around assessing an individual’s needs in the context of the Framework rather than being a legal or adversarial process.”
  • Where wider issues are raised by advocates (such as legal questions) they should, if appropriate, be asked to raise these separately with the PCT/CCG outside the MDT meeting.

[the site proprietor would add that where the person is found to need CHC funding and the placement would not be in the person’s own home, but in a registered care home, an incapacitated unbefriended person MUST be given an IMCA, in relation to care planning.]

 

Commissioning and implementation of CHC obligations

Just as with social care, before the advent of personalisation and making packages fit the person, rather than making the person fit what has already been bough, in bulk, for a discount, commissioning of care is often wholly separate, in practice, from the function of assessing for it and care planning for meeting the needs.

NHS commissioning hubs are still not used to buying individuated packages of care for people who DO need to be in a nursing home, and often treat as ‘suitable’ merely whatever is registered in the area for the category of client need that requires to be managed, rather than considering whether it is ‘appropriate’ because it is actually able to meet the needs of the individual, appropriately. That is probably not unlawful as a commissioning policy, but would be unlawful if it is treated as a rule and a non-negotiable – but either way, it is not consistent with government commitment to NHS health service arrangements being personalised.

What does CHC mean, when it comes to making arrangements to meet the need?

  • No right to choice of any particular care home – the Choice of Accommodation Directions do not apply to CHC clients, only to social services clients.
  • As with care from social services, no right to stay in one’s own home, as the care may not feasibly be able to be delivered in that environment, at all, or cost effectively, and this is all public money.
  • No impact on ordinary residence – wherever you go, under a package that contains accommodation and any NHS funded care above and beyond Funded Nursing Care Contribution, you remain the responsibility of the PCT/CCG that first assessed your eligibility and found you eligible; and your ordinary residence for social care purposes if you should cease to qualify, remains with the authority from whence you were living before qualifying.
  • No easy way to top-up…but case law now makes it at least possible, on the basis that the NHS can’t tell even a sectioned mental patient what NOT to spend his or her own money on! (see the Dorset case in the database).
  • No right to direct payments (as yet – they are being piloted, still) but it is already possible to have a ‘health’ budget, because a health budget is merely a commissioned package where the patient has much more choice and control than they would have traditionally been given – and this is well suited to long term packages for chronically ill people or people with very expert carers in an own home setting.
  • High cost care packages will have been tendered, in most cases, by commissioners, or hubs, because public procurement rules for transparency and fairness will have applied – but this will also have meant that some e-bidding practices for beating the price down, will have crept in, about which people tend to have very strong feelings – one waits to see if Monitor will do anything about this trend.

 

The basic purpose of commissioning in the CHC context

  • “There should be strong linkages between the care planning and commissioning processes in PCT/CCGs.”
  • “Supporting People with Long-Term Conditions; Commissioning Personalised Care Planning. A Guide for Commissioners” sets out how to adopt a personalised approach for individuals with a long-term condition and how to reflect this in the commissioning of services.
  • The aim is to achieve an overarching, single care plan that is owned by the person, but can be accessed by those providing direct care/services or other relevant people as agreed by the individual, e.g. their carer(s). The important aspect of this is that the care planning discussion has taken place with an emphasis on goal setting, equal partnership, negotiation and shared decision-making.

 

Case management and review

Once an individual has been found eligible for NHS continuing healthcare, the PCT/CCG is responsible for their case-management, including monitoring the care they receive and arranging regular reviews. This could be through joint arrangements with LAs, subject to local agreement.

PCT/CCGs should ensure arrangements are in place for an ongoing case-management role for all those entitled to NHS continuing healthcare, as well as for the NHS elements of joint packages.

Case-management necessarily entails management of the whole package, not just the healthcare aspects.

Accommodation as part of a package of CHC

PCT/CCGs should be aware of their responsibilities and powers to meet housing-related needs for those entitled to NHS continuing healthcare:

  1. a)      PCT/CCGs have a general responsibility under section 3(e) of the NHS Act 2006 to provide such after-care services and facilities as they consider appropriate as part of the health service for those who have suffered from illness.
  2. b)      PCT/CCGs may make payments (B: in the nature of grants, rather than purchases) in connection with the provision of housing, to housing authorities, social landlords, voluntary organisations and certain other bodies under sections 256 and 257 of the above Act.
  3. c)      PCT/CCGs also have a more general power to make payments to LAs towards expenditure incurred by the LA in connection with the performance of any LA function that has an effect on the health of any individual, has an effect on any NHS functions, is affected by any NHS function or are connected with any NHS functions – s256.
  4. d)      Housing can form part of wider partnership arrangements under section 75 of the above Act. Fuller details are available in guidance mentioned in the Practice guidance.

 

The commissioning minimum

Continuing healthcare commissioning by PCT/CCGs should include strategic planning, specifying outcomes, procuring services, and managing demand [what does that mean!??] and provider performance (including monitoring quality, access and the experience of those in receipt of NHS continuing healthcare).

The services commissioned should include an ongoing case management role [from the provider?] as well as the assessment and review of individual needs.

PCT/CCGs should consider commissioning from a wide range of providers in order to secure high quality, value for money services. To help inform this approach, PCT/CCGs should have an understanding of the market costs for care and support within the relevant local area.

PCT/CCGs should ensure clarity regarding the services being commissioned from providers, bearing in mind that those in receipt of NHS continuing healthcare continue to be entitled to access the full range of primary, community, secondary and other health services.

PCT/CCGs should commission services using models that maximise personalisation and individual control and that reflect the individual’s preferences as far as possible.

Unnecessary changes of provider or of care package should not take place purely because the Responsible Commissioner has changed.

 

Under what circumstances can the PCT/CCG decline to provide care in the preferred setting of the individual?

The starting point for agreeing the package and the setting where NHS continuing healthcare services are to be provided should be the individual’s preferences.

  1. The cost comparison has to be on the basis of the genuine costs of alternative models. A comparison with the cost of supporting a person in a care home should be based on the actual costs that would be incurred in supporting a person with the specific needs in the case and not on an assumed standard care home cost.
  2. Where a person prefers to be supported in their own home, the actual costs of doing this should be identified on the basis of the individual’s assessed needs and agreed desired outcomes. For example, individuals can sometimes be described as needing 24-hour care when what is meant is that they need ready access to support and/or supervision. PCT/CCGs should consider whether models such as assistive technology could meet some of these needs. Where individuals are assessed as requiring nursing care, PCT/CCGs should identify whether their needs require the actual presence of a nurse at all times or whether the needs are for qualified nursing staff or specific tasks or to provide overall supervision. The willingness of family members to supplement support should also be taken into account, although no pressure should be put on them to offer such support. PCT/CCGs should not make assumptions about any individual, group or community being available to care for family members.
  3. Cost has to be balanced against other factors in the individual case, such as an individual’s desire to continue to live in a family environment.

 

Local and out of area differentials

The funding provided by PCT/CCGs in NHS continuing healthcare packages should be sufficient to meet the needs identified in the care plan, based on the PCT/CCG’s knowledge of the costs of services for the relevant needs in the locality where they are to be provided.

There may also be circumstances where an individual in an existing out of area placement becomes entitled to NHS continuing healthcare and where, although the care package is of a higher cost than the responsible PCT/CCG would usually meet for the person’s needs, the cost is reasonable taking into account the market rates in the locality of the placement. PCT/CCGs should establish this by liaison with the PCT/CCG where the placement is located. In such circumstances PCT/CCGs should consider whether there are particular circumstances that make it reasonable to fund the higher rate.

Where an individual become entitled to NHS continuing healthcare and has an existing high-cost care package PCT/CCGs should consider funding the full cost of the existing higher-cost package until a decision is made on whether to meet the higher cost package on an ongoing basis or to arrange an alternative placement.

 

What is the PCT/CCG role in relation to carers when someone is in receipt of NHS continuing healthcare?

When a PCT/CCG decides to support a home-based package where the involvement of a family member/friend is an integral part of the care plan then the PCT/CCG should give consideration to meeting any training needs that the carer may have to carry out this role.

  • In particular, the PCT/CCG may need to provide additional support to care for the individual whilst the carer(s) has a break from his/her caring responsibilities and will need to assure carers of the availability of this support when required (respite).
  • Consideration should also be given to referral for a separate carer’s assessment by the relevant LA.
  • PCT/CCGs have been allocated funding to support carers by DH and through their strategic commissioning they should consider how this funding can best be used to support carers of people eligible for NHS continuing healthcare.

 

Can an individual pay for additional services themselves in addition to their NHS continuing healthcare package?

The DH published ‘Additional Private Care guidance’ in March 2009 on NHS patients who wish to pay for additional private care, in addition to their NHS care package.  It has now been withdrawn, but there is nothing to say that the principles are no longer applicable, because they had to be based on the law, in the first place:

Executive Summary

  •    NHS organisations should not withdraw NHS care simply because a patient chooses to buy additional private care.
  •    Any additional private care must be delivered ‘separately’ from NHS care.
  •    The NHS must never charge for NHS care (except where there is specific legislation in place to allow charges) and the NHS should never subsidise private care.
  •    The NHS should continue to provide free of charge all care that the patient would have been entitled to had he or she not chosen to have additional private care.
  •    NHS Trusts and Foundation Trusts should have clear policies in place, in line with these principles, to ensure effective implementation of this guidance in their organisations. This includes protocols for working with other NHS or private providers where the NHS Trust or Foundation Trust has chosen not to provide additional private care.
  •    Strategic Health Authorities (SHAs) and Primary Care Trusts (PCT/CCGs) should work together to ensure that the guidance is being implemented properly in their local areas.

 

So in relation to buying preferences or extras – wants as opposed to needs – the basic principle is this: People can’t be told what not to spend their own money on – they can’t be stopped.

4.1 This guidance establishes that, where a patient opts to pay for private care, their entitlement to NHS services remains and may not be withdrawn.

4.2 Patients may pay for additional private healthcare while continuing to receive care from the NHS.

  • There should be ‘as clear a separation as possible’ between private and NHS care.
  • The fact that some NHS patients also receive private care separately should never be used as a means of downgrading or reducing the level of service that the NHS offers. …
  • Patients should never be charged for their NHS care, or be allowed to pay towards an NHS service (except where specific legislation is in place to allow this) as this would contravene the founding principles and legislation of the NHS.
  • Where a provider receives a request for additional privately-funded services from an individual who is funded by NHS continuing healthcare they should refer the matter to the PCT/CCG for consideration [presumably in case the request signifies an expansion in the needs of the client that the PCT/CCG should also be paying for]
  • If the individual advises that they have concerns that the existing care package is not sufficient or not appropriate to meet their needs, PCT/CCGs should offer to review the care package in order to identify whether a different package would more appropriately meet the individual’s assessed needs. In developing or reviewing care packages, PCT/CCGs should consider whether other services commissioned or provided by the PCT/CCG would help meet the individual’s needs.
  • The majority of the care CHC patients receive is often by its nature focused on supporting them within their own home and any additional private care may well also be focused on home-based support. in such circumstances, the private care should be delivered by different staff to those involved in delivering the NHS-funded care at the time it takes place and they should not be delivering treatment, care or support identified within the care plan as being part of the NHS-funded service. [How can anyone efficaciously insist on that?!]
  • Where separation of NHS and privately funded care arrangements is possible, the financial arrangements for the privately funded care is entirely a matter between the individual and the relevant provider and it should not form part of any service agreement between the PCT/CCG and the provider.

There has been a case which makes these principles make sense in practice:

Coombs v (1) Dorset NHS PCT/CCG (2) Nottinghamshire Healthcare NHS Trust (2012)

A person detained under the Mental Health Act 1983 was not, as a matter of public policy or otherwise, prevented from paying for his own care or treatment, although the choice of appropriate placement or treatment would remain to be made by the detaining authority or the patient’s responsible clinician.

In proceedings arising from a serious head injury sustained whilst he was a detained patient, the issue arose as to whether C should be permitted to fund his future care. That matter was ordered to be determined as a preliminary issue.

The defendant health authorities (D) contended that whilst ordinary patients could choose to pay for their treatment, the position for detained patients had to be regarded differently, in particular because they could not choose where they were placed or the treatment they received: that was a matter for their responsible clinician under s.34 of the 1983 Act.

C submitted that there was no reason why a detained patient should not be able to pay for treatment out of his own resources if he wished. He accepted that a detained patient would not be able to choose where he was detained or the treatment he received, and that all he could do was to pay the money, but he argued that where there were alternative appropriate placements, one of which might be expensive so that the funding authority was unwilling to pay for it, there was no reason why the patient should not be able to provide the extra means to enable his detention in that preferred placement.

HELD: Treatment for mental disorders was complex and the responsible clinician had the power to control a patient’s placement and treatment, but that was not determinative of the preliminary issue. So long as a patient remained detained, the right to make a decision on the appropriate placement and treatment remained with the responsible clinician, but if the patient had the funds to undergo particular treatment or accept a particular placement deemed appropriate, there was nothing to prevent him from doing so, so long as it was clear that he remained subject to the responsible clinician’s decision as to his care.

The court concluded that a person detained under the 1983 Act was not prevented from paying for his own care or treatment. D was granted permission to appeal against that decision.

Until that decision was overturned, its approach would have to be considered lawful by any PCT/CCG/CCG considering how to exercise its discretion in relation to the decision as to where appropriately to place someone for CHC services, it is suggested.

 

 

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