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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."