The boundary between health and social care continues to be a major issue, and is especially stark around long-term care and NHS continuing healthcare. Melanie Henwood explores the issues raised by a new report from the National Audit Office and highlights the major anomalies around fully funded care for some people, and means tested social care for others.
The National Audit Office (NAO) investigation into NHS continuing healthcare funding published on 5 July 2017 shines a light on the largely hidden and little-known operation of this area of long-term care. Amidst all the brouhaha around paying for care that surfaced during the general election campaign, mention of continuing healthcare was conspicuously absent, yet the interface between health and care is never sharper than where the two systems collide around long-term care.
Continuing healthcare (CHC) refers to a package of care that is arranged and fully funded by the NHS for people with significant, complex ongoing healthcare needs. As the NAO remarks, funding for such care “is a complex and highly sensitive area, which can affect some of the most vulnerable people in society and those that care for them.”
Concerns about the operation, and inconsistencies, of CHC have been in evidence a considerable time. In a review I was commissioned to undertake for the Department of Health in 2004 I drew attention to ongoing problems that would still exist if national eligibility criteria were to be introduced (as they later were), not least because of the uncertainty about the boundary between health and social care that legal judgments had failed to resolve. The NHS Ombudsman has repeatedly revisited the issue of continuing care and drawn attention to the inconsistent and incorrect determination of eligibility for CHC in individual cases. The latest report from the NAO indicates that many of the familiar and long-standing criticisms of CHC eligibility continue to hold sway.
The issues around CHC are complex but the key considerations include the following:
- It’s a lottery: the numbers of people eligible for CHC vary widely from 28 to 356 people per 50,000 population. This variation cannot be explained by demographic factors and “suggests that there may be differences in the way CCGs and local authorities are interpreting the national framework.”
- A lot of people are assessed for CHC but relatively few are deemed eligible. NHS England estimates that 18% of initial screenings and 29% of people referred for full assessment are assessed as eligible for CHC.
- Other than the existence of a national framework there are few processes for ensuring consistency of eligibility decision-making either within or between CCGs.
- Delays in completing assessments and determinations of eligibility are common. The national framework states that eligibility should normally be determined within 28 days, but the NAO reports that about one third of full assessments took longer to complete in 2015-16 (with 10% of CCGs indicating that assessments took longer than 100 days). The knock-on effects of these timescales to delayed discharges (transfers of care) are obvious.
- The outcome of an assessment has major cost implications for patients and their families, local authorities, and clinical commissioning groups (CCGs). For people who are not deemed eligible, the costs of care will be transferred mainly to the social care system, and for people assessed as needing to pay some or all of those costs, these lie where they fall.
- Despite large numbers of people failing to meet eligibility criteria, CCGs face significant costs as they are legally obliged to pay the full costs of those who are eligible (estimated at 4% of all CCG expenditure). Nonetheless, CCGs are being required by NHS England to make £855 million in savings on CHC and NHS-funded nursing care by 2020-21.
- It is not known how many people appeal against unsuccessful CHC funding decisions. Although there are mechanisms for appeal, there is no central data collected on how these are used. It is known that cases that are reviewed can lead to different decisions. In 2003/04 the lack of consistency of eligibility decisions between Strategic Health Authorities (prior to national eligibility being introduced) led to a requirement for review and widespread restitution which refunded the costs of care when incorrect eligibility decisions had been made.
Eligibility for CHC is not about diagnosis (it does not, for example, cover everyone with dementia, or everyone with MS or Parkinson’s). It is about someone’s specific needs for healthcare, and particularly involves clinical judgements about the nature, intensity, complexity, and unpredictability of need. All of these dimensions are difficult to assess, complex to understand, and inevitably contain a highly subjective component. In any nursing home, people who are paying for their own care, who are funded through the local authority, or who are fully funded by the NHS, are often indistinguishable from one another in any common sense or lay understanding. It is little wonder that CHC is seen as unfair, arbitrary, and illogical – particularly by those people and their families who cannot understand why they do not fit eligibility criteria.
A great amount of resources and staff time are committed to undertaking assessments for CHC, and – in effect – policing the boundary between care and health. Given the significance of eligibility decisions, it is important that the question of eligibility is considered wherever relevant. The fact that large numbers of assessments are undertaken and find people ineligible is not necessarily an argument for fewer assessments, but for critical appraisal of why so few make it through the assessment, and why this is subject to so much variation. When patients are being considered for discharge from hospital, the first question in the discharge process is supposed to ask whether the person has been considered for CHC eligibility. This is an important check and safeguard that was intended to ensure that people’s needs were properly assessed before major decisions about their care were made.
The NAO findings add to evidence built up over the last two decades and point once again to the anomalous, irregular, inconsistent, and often baffling operation of CHC eligibility determination, which is reflective of the wider fault line between two separate but parallel systems of eligibility and funding for health and care, and cannot be resolved in isolation from it. Any debate about the funding of long-term care, including the forthcoming promised Green Paper, will need to address this central dichotomy.
About the Author
Melanie Henwood is an independent health and social care research consultant.
I have been in a battle for nhs continuing healthcare for nearly 5 years,and it’s not as complex as everyone thinks it is,in the coughlan court of appeal in 1999,the judgement by the court stated only if the care was incidental and ancillary and was what social care could be expected to provide, can it be provided by local councils,any care above mearly incidental and ancillary,must be provided by the NHS,this judgement was a blow to the then Labour government,so the NHS then brought in later the first nhs continuing healthcare framework (2007)in which was contained the complexity, and 3 other sections, all which are are not inline with the law of the land(mearly incidental and ancillary) as my CCG knows l know this they have lied and tried to put me off keep claiming it,but l will not give up,l have huge files containing everything they have done as evidence,on a site called care to be different you will get all the help you need to fight them,this site contains accurate up to date information,without going into my health problems l can tell l am in palliative care.
Regards Valerie Bradley
My husband has been refused full funding by the NHS even though he is on section 117 of the mental health
act but has been granted part funding towards his care home fees. Can you tell me how much this is
If you were discharged on, or after, 1st April 2016, the CCG that pays for your after-care should be the CCG that covers the area where you usually lived before you went into hospital.They will be responsible for paying for your after-care for as long as you need it. (from: https://www.rethink.org/advice-and-information/rights-restrictions/mental-health-laws/section-117-aftercare/)
There is no great mystery as to why the proportion of those deemed eligible versus those assessed is so low – it is a system designed to exclude from funding, rather than to meet need.
This is particularly marked in cases of dementia, where care needs become all-encompassing and obvious by any lay criteria (e.g. unable to eat or drink without help, not independently mobile, bed-bound, doubly incontinent, unable to communicate needs or wishes, suffering cognitive and sensory impairment), but very few people are deemed eligible for support.
Aggressive, disruptive, and unpredictable behaviours score higher, because they are harder to manage by care staff – not because the need itself is greater than passive dependency. (This tends to favour men, whose symptoms are more likely to be aggressive or physically challenging – arguably discriminatory.)
Assessment of the interaction of domains is highly subjective and relative (i.e. within each panel, assessors will be weighing this up comparatively with other applicants, to prioritise funding from a finite budget, although this is not how the system is theoretically supposed to work). The guideline that “well-managed needs are still needs” is frequently ignored. Many CCGs recognise only acute illness (and frame the assessment criteria to fit this), because chronic conditions, however disabling, are too expensive for continuous funding.
People who enter care after being sectioned under the Mental Health Act have all their care fully-funded by the NHS, without means test; whereas others receiving the same care in the same unit of the same home under social care rules, whose ongoing daily practical needs are of the same level, will be charged 100% cost. How is this fair?
Finally, as Alison Giraud-Sauders says above, many CCGs apply artificial (and technically illegal) caps, which not only restrict care options, but lay residents open to being charged crippling top-ups by private providers under so-called “Lifestyle Choice”, simply to stay in their existing choice of home. (In my mum’s case, this was 45% on top of the NHS CCG contribution.) The NHS routinely colludes with this, rather than meet the full cost of the place, as is the legal requirement. It is patently untrue that NHS CHC provides 100% funding to all those who are deemed eligible.
The problem with this issue it is, it’s looking into the details of a deliberately obscured framework, which is designed along with all other public services to deny service rather than to provide it.
Political Neo-Liberal politicians have transferred all public provision into the private sector, massively and deliberately complicating every aspect of delivery.
The clear direction of travel is explained here in this article which was published in 2012 when Thatchers secret 1982 Cabinet papers were released under the 30 yr rule: https://www.theguardian.com/politics/2012/dec/28/margaret-thatcher-role-plan-to-dismantle-welfare-state-revealed
American advisers have been shepherding the whole process through to the eventual introduction of American Health Corporations finally taking over what is left of our health care system.
Britain has been sleepwalking into oblivion whilst corrupt politicians play games with all our lives.
Just look at the negotiations between Liam Fox and those private sector interests in America, a continuation of the final stages of a complex drawn out process of corporatism, we need to look at the big picture and make sure everyone in the country is aware.
The removal of this government and corrupt politicians is the answer to all our problems.
Then we should concentrate on rebuilding and taking back the NHS which has been dismantled by deception.
When I was in practice (mainly adult mental health but also frail elderly and dementia situations), albeit in Wales (where I live), this was a continuing issue. We don’t have CCGs , only Local Health Boards – this may make things a bit simpler.
This is one of the issues unresolved since the foundation of the welfare state (as we know it) circa 1948. The numbers of people affected by this sort of process must have been negligible then. Moreover, there were so-called geriatric and psycho-geriatric beds in hospitals up to about twenty five years ago. As we know, long-term care now is provided for the most part (or a very large part) by the private sector – and this has to be commissioned and inspected by State bodies. Moreover, many patients/residents have to pay for themselves.
This is an economic issue but fundamentally a political issue.
Local authorities of course are obliged to assess for charging – this creates further anomalies. I can picture 3 people in similar circs, living side by side – one paying, one funded by the LA, and the third funded by the NHS.
On balance, I think that the NHS should fund complex care and that the process should be streamlined – and of course properly funded. But patient/resident choice should be part of the mix. (Social workers are good at taking this into account.)
The NAO report and this commentary draw attention to the problems with assessment for eligibility. A huge concern for many people, however, is what happens after a person has been assessed as eligible for NHS CHC funding. The law allows CCGs to decide how to meet your needs, and allows you (and/or your family or attorney) less choice than local authorities are required to give. This concern is particularly acute for people living in CCGs that are attempting to set artificial funding caps (e.g. limiting what they will pay for care at home to the cost of placing you in residential care, even if you absolutely do not want to go into a residential home). This challenge to human rights is obvious and acute. Less obvious are the frequently reported attempts to limit expenditure by, for example, ignoring the requirement to fund a complete package of health AND associated social care needs. Melanie Henwood is quite right that any debate about the future funding of long term care and support must include NHS CHC.