The great – care fiasco

It is enormously refreshing to read the NHS ombudsman’s recent
report on the NHS’s continuing health care
responsibilities.¹ She speaks plainly. The Department of
Health has failed patients, social services and health authorities
alike. It has failed to provide guidance explaining the importance
of the Court of Appeal’s 1999 landmark Coughlan judgement; its
actions have caused confusion and made it even more difficult to
judge who is entitled to have their nursing home fees paid by the
NHS. In her opinion “such an opaque system cannot be fair”.

The debate over the future of continuing health care is not new.
Means, Morbey and Smith chart the organisational tensions that have
existed over the health and social care divide since the formation
of the NHS.² They conclude that these have been
characterised by a failure of the NHS to invest in community health
services or to transfer significant resources to social services.
They cite a series of examples which illustrate how the NHS has
(since its inception) sought to shed its responsibility for
patients with continuing care needs, in other words dumping these
patients on local authorities.

Legally, however, there has been no material change in the scope of
the NHS’s continuing health care responsibilities since 1948. There
has been no ministerial statement, no direction by the secretary of
state or indeed any other announcement to the effect that the
entitlement to continuing health care is to be curtailed. What has
however occurred is that successive governments have acquiesced
(or, more often, deliberately connived) in the erosion of the
right.

With the changing boundary has come the removal of NHS facilities
for patients with continuing care needs. Harding, Meredith and
Wistow refer to the 30 per cent (17,000) reduction in the number of
long-term geriatric and psychogeriatric NHS beds between 1983 and
1993.³ During this period the average length of stay in
a geriatric bed fell from 8.6 days to 5.7 days.⁴ We
therefore have an accelerating game of musical chairs, whereby the
chairs (or beds in this case) are removed with ever greater speed
and the players (patients) have fewer pauses.

The effect of these administrative changes has been that today
there are approximately 25,000 people at any one time paying for
places in nursing homes who 20 years ago would have received these
services free from the NHS.

The first major challenge to this state of affairs originated as an
NHS ombudsman’s complaint. This concerned a patient who had
suffered several strokes and was discharged from the Leeds General
Infirmary, forcing his wife to pay for a private nursing home. The
NHS ombudsman considered that even though the patient’s “condition
had reached the stage where active treatment was no longer
required… he was still in need of substantial nursing care, which
could not be provided at home and which would continue to be needed
for the rest of his life”. He considered that the failure of the
health authority to fund such a patient was classic
maladministration.

In response to this highly publicised report, the government issued
guidance, indicating: “If in the light of the guidance, some health
authorities are found to have reduced their capacity to secure
continuing care too far – as clearly happened in the case dealt
with by the NHS ombudsman – then they will have to take action to
close the gap.”

In October 1994 the DoH consulted and issued draft guidance which
was to become the subject of intense criticism on the basis that it
seemed to compound rather than address the situation described by
the NHS ombudsman. For instance, it comprised less than three pages
and yet managed to mention “available resources” five times. To its
credit, however, the DoH consulted on the draft and the final 1995
guidance was much better than the draft – not that this is saying a
great deal.

The Coughlan judgement
In 1999 the Court of Appeal handed down its judgement in Coughlan –
a judgement of enormous importance. It reinforced the finding of
the ombudsman in the Leeds complaint: that unless the nursing care
someone needed was of a low level – in terms of quality and
quantity – they were entitled to NHS continuing care support.
Following the judgement the DoH issued “interim guidance” that did
little more than ask health and local authorities to “satisfy
themselves” that their continuing care policies were in line with
the judgement. However, importantly, it gave a clear indication
that further guidance would be issued “later this year”.
Inevitably, the expectation of this led to inaction.

The DoH’s subsequent performance has been lamentable. Contrary to
its assertion, it in fact took two years to issue the follow-up
guidance. This guidance was issued without any consultation and
slipped out without any fanfare, and without any exhortations to
health authorities to undertake fundamental reviews.

The guidance suggests that the Coughlan judgement merely confirmed
the status quo. In this respect the DoH should be ashamed of itself
– a view with which the ombudsman appears to have some sympathy.
There must be strong grounds for believing that a maladministration
complaint against the DoH – for the content of the guidance and the
manner in which it was prepared and issued – would succeed. It is
guidance that has been roundly criticised by the court and
ombudsman, and its defects have, in the ombudsman’s opinion, caused
“injustice and hardship” to those who have wrongly been compelled
to pay for nursing care.

The Coughlan judgement called for fundamental reappraisal. As the
Royal College of Nursing showed in its 1999 report, Rationing
by Stealth, the continuing care policies of more than 90 per
cent of health authorities were as deficient as those of the health
authority in the Coughlan case.

Free nursing care guidance
It is not only in respect of its guidance on continuing care that
one can perceive a DoH agenda to erode the rights of older people
to long-term NHS support. The guidance on free nursing care also
undermines this fundamental care entitlement.

As is well known, the government felt unable to accept the full
recommendations of the 1999 Royal Commission report on long-term
care, With Respect to Old Age, opting instead to fund only
the registered nursing care costs of residents in nursing homes. In
England, primary care trusts were charged with responsibility for
deciding the extent of this obligation, and the DoH issued guidance
to explain how this should be achieved.

The guidance created an entirely arbitrary measure known as the
Registered Nursing Care Contribution (RNCC) assessment tool. The
RNCC is the creation of the DoH, not parliament, and the three
bands (high, medium and low) are arbitrary to the extent that the
DoH had an almost entirely free hand in determining the eligibility
criteria for each band of support.

In my view the DoH set the high level of support (the “high” band)
well above the level defined by the Court of Appeal as the point at
which a person could expect full continuing care funding. By so
doing it caused confusion among health authorities and trusts. If
the “high band” only triggered a PCT contribution liability of
£120 a week how could someone with a lesser health care need
be entitled to full continuing care funding? The guidance describes
the “high band” as follows: “[the patient] will have complex needs
that require frequent mechanical, technical and/or therapeutic
interventions. They will need frequent intervention and
re-assessment by a registered nurse throughout a 24-hour period,
and their physical/mental health state will be unstable and/or
unpredictable.”

The patient who was the subject of the Leeds NHS ombudsman
complaint does not meet these criteria. Neither does Pamela
Coughlan. Indeed the high band accurately describes the condition
of the nursing home resident considered in the most recent NHS
ombudsman’s report who, as a result of several strokes, had no
speech or comprehension, was unable to swallow and required feeding
by tube. The ombudsman had no doubt about her entitlement to
continuing NHS funding.

It is likely that some patients assessed as falling within the
medium band will also be entitled to continuing care. The guidance
states that patients in the medium band “may have multiple care
needsÉor will require the intervention of a registered nurse
on at least a daily basis, and may need access to a nurse at any
time”. Both Coughlan and the patient subject of the Leeds complaint
would have had difficulty qualifying for this band.

It is inevitable that the existence of the registered nursing care
contribution will be used as a pretext for abolishing the concept
of continuing care support for residents in care homes. Indeed many
health authorities are already acting as if this were the
case.

What is all too often forgotten in this debate is the plight of
individuals. The DoH’s connivance in the erosion of the NHS’s
continuing care responsibilities has placed enormous strains on
social services. However, they have the opportunity of defraying
some (or all) of their liability by charging nursing home residents
for the service they receive.

The losers are, of course, the residents themselves. They are
forced to pay for care using all their income (with the exception
of £17.50 a week) and in many cases their home and the vast
bulk of their savings.

Continuing care statements should…

• Start with definitions (of what key phrases mean).
• Be based on an understanding that: it is unlawful for social
  services to fund the nursing home fees of patients whose nursing
  care needs are more than “low level” (in terms of quality or
  quantity); continuing health care can be provided in a range of
  settings, from a hospital, to a nursing home or residential home,
  and people’s own homes; the setting of the care should not be the
  sole or main determinant of eligibility; criteria that emphasise
  the needs of a patient for specialist medical supervision in should
  be avoided; criteria requiring patients to need “specialist
  nursing” are effectively meaningless (“idiosyncratic” and
  “elusive”).
• Contain in an appendix descriptions of the care needs of the
  patients that the court and ombudsman have concluded are entitled
  to continuing health care funding (for example, the Leeds patient,
  Coughlan and patients in the recent ombudsman’s report).

Luke Clements is a solicitor and principal research
fellow at the University of Warwick. Contact him at
e-mail:L.Clements@warwick.ac.uk

References

¹ Department of Health,
Second Report for Session 2002-2003 NHS Funding for Long Term
Care, Stationery Office, HC 399, 2003

² R Means, H Morbey, R
Smith, From Community Care to Market Care? Policy Press,
2002

³ T Harding, B Meredith, G
Wistow (eds), Options for Long Term Care, HMSO, page
eight, 1996

⁴ DoH, Hospital
Discharge Workbook, page 12, 1994