Alzheimer’s ruling reignites debate on the provision of long-term care

Nearly a year after the health ombudsman sent shockwaves through
the NHS with her ground-breaking rulings against health authorities
that had been incorrectly charging individuals for their long-term
care in nursing homes, Ann Abraham has done it again.

Her latest ruling, made public last week by the wife of an
Alzheimer’s sufferer, has reopened the debate on the provision and
funding of long-term care, raising the potential for further
compensation and review.

The issue was supposed to have been laid to rest in 1999 by the
Royal Commission on Long Term Care and the Court of Appeal’s
“Coughlan ruling” on when it might be lawful to transfer
responsibility for a chronically ill patient’s nursing care to a
local authority.

But, five years on, Abraham proves the issue is still not
resolved.

The latest ruling, made in November 2003 but not due to be
officially published until later this year, comes in response to
Barbara Pointon’s four-year battle with the former Cambridgeshire
Health Authority and South Cambridgeshire Primary Care Trust for
free NHS care at home for her husband (see panel, facing
page).

Pointon complained that the former health authority and the PCT had
misapplied its local eligibility criteria and Department of Health
guidance by using assessment tools biased towards physical
conditions and against care at home.

She said that, in particular, the PCT “relied on inaccurate or
inadequate information, failed to take account of relevant facts in
their assessment and took account of irrelevant factors”.

Abraham upheld all Pointon’s complaints. In her findings, she says
the health authority’s policy and eligibility criteria for
NHS-funded continuing health care reflected the relevant DoH
guidance. But she adds: “The ambiguities within the criteria,
particularly those referring to dementia and sensory and/or
physical disabilities, caused staff to produce inappropriate
assessments that concentrated solely on Mr Pointon’s physical
needs.”

As for the PCT, Abraham says it “assessed Mr Pointon against the
wrong criteria, once again focusing on physical needs and also
failing to recognise that the standard of care provided by Mrs
Pointon was equal to that a nurse could provide”.

The DoH contends Abraham’s latest decision changes nothing. It
insists all the points raised by the ombudsman are covered by
existing DoH guidance, by the revised criteria strategic health
authorities had in place by the end of 2003 and by the review of
continuing NHS health care decisions due for completion by the end
of next month.

It seems unlikely, however, that Abraham would agree. Last year,
she said the DoH’s guidance and support had failed to provide “the
secure foundation needed to enable a fair and transparent system of
eligibility for funding long-term care to be operated”. She
recommended new national guidance on eligibility for continuing NHS
health care, with detailed definitions and case examples, to make
it much clearer when the NHS was obliged to provide funding and
when it was down to the discretion of NHS bodies locally.

That new guidance has not been forthcoming, and Abraham obviously
believes the problem of ambiguous eligibility criteria is still an
issue. She concludes her latest ruling with a call for all PCTs and
strategic health authorities to review their eligibility criteria
again “to ensure that the criteria for funding care at home and the
recognition of patients’ psychological as well as physical needs
are clearly defined”.

The Alzheimer’s Society believes the ruling and proposed review
could have significant implications.

Chief executive Neil Hunt says, given the focus in last year’s
ombudsman’s report on people living in care homes, it is likely
that PCTs and strategic health authorities have been limiting their
review of people refused continuing NHS health care to those in
care home settings. “I can’t imagine there’s been a whole-scale
review of people who have applied and been unsuccessful. We think
there will be implications for thousands of people.”

Stephen Lowe, community care policy officer at Age Concern, agrees.
He says the ruling could also lead to more people receiving
continuing care at home in the future and more transparent
assessment and decision-making processes in the NHS.

“The NHS may need to be more flexible in its response to social and
psychological needs in relation to how it tends to fund,” he says.
“Abraham has taken the line that the NHS could not refuse to
provide respite care at home on the grounds of cost if care at home
was necessary to meet the psychological needs of someone with
continuing care needs.”

Responses among strategic health authorities to the latest ruling
vary. Thames Valley, for example, states there is no need to alter
its eligibility criteria as a result of the Pointon case because
“it is certain Mr Pointon would have been eligible for NHS
continuing care in the area”.

At Avon, Gloucestershire and Wiltshire, retrospective review
project manager Jon Tomlinson describes the case as “a reminder to
do things properly” rather than a precedent.

He is confident the strategic health authority’s revised continuing
care policy is fully Coughlan-compliant and that its eligibility
criteria already reflects the latest judgement. But in response to
the ombudsman’s ruling that South Cambridgeshire PCT was wrong to
ignore the level of care provided by an unqualified carer when
calculating an individual’s nursing needs, Tomlinson admits it
would be difficult to recommend someone for continuing NHS health
care if they did not need regular NHS supervision.

A spokesperson for Birmingham and The Black Country Strategic
Health Authority says its new eligibility criteria are not affected
by the latest ruling but admits none of the continuing care cases
reviewed so far involve individuals living in their own
homes.

Liberal Democrat older people’s spokesperson Paul Burstow says the
ruling’s political and financial implications are far-reaching. He
believes the series of continuing care guidance produced so far has
“obscured who is responsible for what” and calls on ministers to
look again at the whole issue of long-term care, including
revisiting the royal commission’s recommendations.

But there are also several things to consider at a local level,
such as whether local authorities will be able to claim back the
cost of their share of means-tested services provided to people who
should have qualified for free continuing NHS health care, and
whether they have been – and could still be – breaking the law by
accepting responsibility for providing and charging for these
services. This could potentially lead to compensation claims from
individuals against social services departments, Burstow
warns.

After four years, the Pointons’ case is now resolved, with the PCT
providing fully-funded continuing NHS health care worth £1,000
a week via social services direct payments. After five years,
however, it would appear an end to the long-term care debate
remains rather more elusive.

Help at last

Malcolm Pointon was diagnosed with Alzheimer’s in 1991, aged 51,
and is now severely disabled and unable to do anything for himself.
His physical and mental health problems result from his condition
and he needs a high level of health care. His wife, Barbara, cares
for him full time in their home at Royston, Hertfordshire.

Between 2001 and 2003, Pointon was assessed three times to
determine whether he qualified for continuing NHS health care. The
first two assessments concluded that his needs were social, not
nursing, because he did not require frequent intervention by a
trained nurse. The third judged that he was eligible to fully
funded continuing health care – but only in a hospital or nursing
home.

In September 2003, after allegedly seeing a draft of the
ombudsman’s report, South Cambridgeshire PCT agreed to fully fund
Pointon’s care at home to the tune of £52,000 a year – the
same as a hospital bed. This covers the cost of a live-in carer, a
night nurse four nights a week and one-day’s respite a week for his
wife.