It’s in the definition

Who pays for continuing care is a problem. But it should not be.
In 1999, Pamela Coughlan (see Care Guidance, below) took a case to
the Court of Appeal seeking to resolve the longstanding confusion
about who pays for continuing care and under what
circumstances.

The Appeal Court ruled that if a person’s primary need is for
health care, then the NHS is responsible for paying for everything
– nursing care, personal care and accommodation – as if they were
in hospital.

It went on to say that there would be circumstances in which social
services would be responsible – if the nursing care was “merely
ancillary or incidental to the provision of the
accommodation”.

The judgement applies to England and Wales – Scotland now has free
nursing and personal care. But it appears that Department of Health
guidance issued after the ruling telling health authorities to
ensure that they were compliant has not been followed. The legality
of health authorities’ continuing care criteria was examined by the
Royal College of Nursing in 2000. It found that 90 per cent of
eligibility criteria were unlawful. In some cases, eligibility
criteria are set so high that only those close to death or who have
high dependency on medical interventions receive free care under
the NHS.

A recent report from health service ombudsman Ann Abraham found
that health authorities may have continued to ignore or
misinterpret the Coughlan case.¹ She investigated four
complaints – sent to her by Paul Burstow, Liberal Democrat
spokesperson for older people – about the way in which health
authorities set and applied their eligibility criteria for NHS
funding for the continuing care of older and disabled people. She
found them wanting.

“It appears to me that some health authorities were reluctant to
accept their responsibilities with regard to such patients and were
not being pressed by the Department of Health to do so,” she
says.

The fact that the Coughlan judgement is being ignored is the
“biggest abdication of legal responsibility in the history of the
welfare state”, says Coughlan’s solicitor, Nicola Mackintosh.

Whether an individual’s nursing care is “merely ancillary or
incidental” has become health’s get-out clause, says Mackintosh. It
is not about who provides it -Êbe it nurse, social worker or
care assistant -Êit is about what type of care is
provided.

She says it is decided by assessing the level of care -Êthe
quantity test. Also considered is whether nursing care is of the
type that a social services agency could provide, such as whether
it falls within services provided under section 21 of the National
Assistance Act 1948 -Êwhich is the quality test.

As an example, in the Coughlan case, the health authority argued
that bladder washouts, artificial feeding – including peg feeding –
catheter care, wound care and administering medication were tasks
that should be carried out by social services. The Appeal Court
disagreed.

Another distinction being drawn by health authorities to avoid
paying is one between specialist and general nursing. But this is a
“total bluff”, says Mackintosh. “If you only need general nursing,
health authorities say you are social services’ responsibility. But
the court said there was no agreed definition of the two and that
this type of distinction was unlawful.”

Abraham has resurrected a debate that should have been put to rest
with the Appeal Court ruling. “The DoH and health authorities
should have been obliged to comply with the law like anyone else,”
says Mackintosh. “At the end of the day, the buck stops with the
secretary of state. It’s his responsibility to ensure they provide
the services lawfully.”

But Abraham notes: “The Department provided little real
encouragement to authorities to review their criteria, and
eligibility of patients, actively.”

Up to 10 new cases are referred to Mackintosh each week. Most
clients have higher needs than Coughlan, but have still been
refused fully funded NHS continuing care.

The number this applies to is unknown, says Jonathan Ellis, health
policy officer for Help the Aged. “There is a relatively small
number of people receiving fully funded NHS care. Probably at least
as many councils will have been paying unnecessarily for care as
individuals,” he says.

In a recent report, Burstow says: “The costs of long-term health
care are, in the main, met inappropriately and often unlawfully by
social services charges.”²

David Behan, president of the Association of Directors of Social
Services, says: “What we know about how to meet the needs of older
people is that no one agency can do that by itself. The best work
locally is going to be where it’s taken forward in a multi-agency
and disciplinary way. We shouldn’t lose sight of what our
accountabilities and responsibilities are within that joint
work.”

However, Pauline Thompson, policy officer for community care
finance at Age Concern England, is quick to highlight another
problem that might befall social services. Unless the continuing
care issue is resolved before the Community Care (Delayed
Discharges) Bill is implemented, local authorities may find that as
well as wrongly taking responsibility for people who should be
funded by health, they may be fined if there is a delay in
providing those services.

As for the future, Abraham wants all strategic health authorities
(SHAs) and primary care trusts to review the criteria in use since
1996. She also wants the DoH to review national guidance on
eligibility and issue new guidance making it clear when the NHS
must provide funding. But will anyone act on this? The DoH merely
says it “will reiterate to SHAs their responsibility to review
continuing care criteria, and agree with local councils one set of
criteria within their area”. It adds that guidance on the delayed
discharges bill will “make clear that the first decision following
assessment of a patient’s needs prior to discharge is whether or
not they require NHS continuing care”.

Ellis says: “It’s extremely important that health authorities
fulfil their responsibilities and for the DoH to settle this
question once and for all.”

There is an opportunity for this to be settled quickly. The 2001
guidance is due for review in June. Help the Aged and others are
hoping that the DoH will not waste this opportunity.

Mackintosh says: “The reason people are in nursing homes is because
they are really ill otherwise they would be in a residential home.
If they don’t need nursing care they shouldn’t be there. That
doesn’t mean that they are all entitled to fully funded NHS care,
but the majority are.”

It is time the NHS and the government accepted this.

¹ A Abraham, NHS Funding for Long Term
Care, The Stationery Office, 2003

² P Burstow, Who Cares Who Pays?
2002

Care guidance  

• 1995: After a health ombudsman judgement that the NHS had
  retreated too far from providing long-term care, the government
  issued guidance setting out a national framework within which
  health authorities were to develop eligibility criteria. 
• March 1999: The Royal Commission on Long Term Care reported. A
  main recommendation was for free personal care. In its response in
  July 2000, the government rejected this, but accepted an
  alternative proposal to make nursing care in nursing homes
  free. 
• July 1999: The Court of Appeal in the case of Pamela Coughlan v
  North and East Devon Health Authority found that, although the law
  allowed social services departments to take responsibility for some
  nursing care when a person was in a care home, it depended on
  whether it was “merely incidental or ancillary to the provision of
  the accommodation which the local authority is under a duty to
  provide”. It said just because “a resident at a nursing home does
  not require in-patient treatment in a hospital does not mean that
  his or her care should not be the responsibility of the NHS”. 
• August 1999: The DoH issued interim guidance saying health
  authorities should be satisfied that their continuing and community
  care policies and eligibility criteria were in line with Coughlan.
  It said it would issue revised guidance later that year. 
• March 2001: The National Service Framework for Older People was
  issued, which brought in free nursing care in nursing homes by a
  registered nurse, but did not include guidance on NHS funding for
  the full costs of continuing care. 
• June 2001: Nearly two years after the 1999 guidance the DoH
  issued new guidance on continuing care. It listed issues that
  health authorities had to consider when establishing eligibility
  criteria but included little on how these issues affected
  eligibility.    

‘It’s difficult fighting the big people’

Monica Perrott’s mother, Daphne Grainger, 72, was admitted to
hospital in Gloucester in November 1999 after a major stroke. It
left her paralysed on the right-hand side of her body and unable to
speak. Grainger already had heart disease, only one functioning
kidney and was an insulin-dependent diabetic. She stayed in
hospital for seven months and was peg fed.  

In April 2000, Perrott’s two sisters attended a financial
assessment meeting with the hospital in preparation for their
mother’s hospital discharge. They were told her care would be
NHS-funded provided the peg remained. But days later the family was
told that the peg would be removed and so funding was
unlikely. 

“We were never told there were eligibility criteria and we could
challenge them. We just thought that was the law and we had to pay
for it,” says Perrott.  Although the peg was removed before
Grainger was discharged into a nursing home, the health authority
paid 10 per cent of the funding for the first 18 months. The home’s
bills were £1,700 a month, paid for by selling Grainger’s
house.  

Perrott started a law course and realised that she could
challenge the funding decision. She told the health authority that
she was aware of the Coughlan judgement. Grainger had a second
assessment in April 2001. The health authority realised the peg was
no longer in place and withdrew funding, says Perrott.  

She adds: “We were told that although she had significant needs,
she didn’t meet their criteria for NHS funding. I think my mother’s
needs were far greater than Coughlan’s – with no disrespect to
her.” 

Perrott requested an independent review, which reported in
November 2001 that her mother should be referred to a diabetic
specialist to stabilise her condition, but agreed with the health
authority’s decision not to fund her care. Grainger died a couple
of weeks after their decision.  

Avon, Gloucestershire and Wiltshire Strategic Health Authority
says it has reviewed its eligibility policy, taking account of the
Coughlan judgement. West Gloucestershire Primary Care Trust is
collecting information about anybody that has raised a query about
their own position or that of relatives and will pass this on to
the health authority. 

Grainger’s case is one of several that health service ombudsman
Ann Abraham is investigating. Perrott says: “It’s very difficult
fighting big people like the NHS, but I just know I’m right.”