Special report on continuing care

The NHS continuing care system is a perennial subject of controversy.

In the last three years it has been the subject of two highly critical reports from the health ombudsman and one from the health select committee.

Last month, a High Court judge made a stinging criticism of government guidance for the system and the “fatally flawed” criteria used by Bexley Care Trust to determine eligibility, in denying Maureen Grogan full funding.

And it has now emerged that around the country, people whose relatives have been denied continuing care are refusing to pay the social care charges they have been landed with as a result – and none has been sued. This is part of a co-ordinated campaign which contends that NHS bodies are using unlawful criteria to deny people continuing care, on cost grounds.

Explosive issue
It is not hard to see why continuing care is such an explosive issue: it concerns some of society’s most vulnerable people – those in need of ongoing care – and the financial implications of non-eligibility are huge.

Those who are deemed eligible for continuing care have their accommodation, living expenses, personal and health care expenses paid for by the NHS.

In 2004-5 this amounted to £526 per week on average for a private nursing home place for an older person.Those who are not given continuing care can receive up to £129 per week from the NHS if they are deemed to require nursing care, through the registered nursing care contribution (RNCC). But they must find the rest of the costs themselves or receive means-tested help from their local authority, up to the full cost of care. People denied continuing care typically become the responsibility of social services.

Jeff Jerome, co-chair of the Association of Directors of Social Services disability committee, says: “I suspect a number of strategic health authorities are interpreting criteria according to cash limits, which of course they shouldn’t be doing, and my local authority colleagues should not be letting them do it.” 

He wants councils to challenge more NHS decisions, given the financial responsibilities they acquire to provide social care to people denied full funding.

Costs to councils
The costs to councils are all the greater given the emergence of protestors unwilling to pay social care fees.

Given the stakes for NHS and local government budgets and for users and relatives’ finances, the clarity, transparency and enforceability of eligibility criteria are crucial.

But these are sorely lacking, according to judges, the ombudsman, the health committee and many people on the receiving end of continuing care decisions.

In the Grogan case, Mr Justice Charles stated the law on continuing care stipulated that anyone whose primary need for long-term care is a health condition is eligible. This flowed from the 1999 Coughlan judgement, in which the Court of Appeal ruled that a group of disabled people, led by Pamela Coughlan, had been wrongly denied full funding.

The implementation of continuing care is through local criteria, set by the 28 strategic health authorities, applied by the 303 primary care trusts.

Such criteria should be in accordance with Department of Health guidance, last updated in 2001.

The DH is currently working on a  national framework for continuing care, due to be published for consultation in April – though the Grogan case may push this back.

Consistency in decision-making
Its aim is to improve consistency in decision-making across the country. In evidence to the select committee last year, then social care minister Stephen Ladyman said he envisaged a single national set of eligibility criteria.

Mr Justice Charles, echoing criticisms from the ombudsman, said the current national DH guidance is “far from being as clear as it might have been”.

This stems from two problems.

Firstly, the guidance only states what local health bodies “should pay attention to”, without stipulating how these factors should be taken into account.

Secondly, there is significant overlap between the wording of the guidance and that of parallel guidelines on the high band of the RNCC, worth just £129 per week.

The RNCC guidance says the high band should be reserved for people with “complex needs” and “unstable and/or unpredictable” physical or mental health, requiring “frequent intervention and re-assessment by a registered nurse throughout a 24-hour period”.

Among the factors that health bodies should “pay attention to” in the continuing care guidance is whether the individual has a “rapidly deteriorating or unpredictable medical, physical or mental health condition and requires regular supervision” by an NHS professional.

In a letter to the DH last year, the ombudsman, Ann Abraham, said that a “person properly assessed for nursing needs and in receipt of high band RNCC, would qualify for NHS continuing care funding”.

Care costs
However, people who receive high band RNCC must find the majority of their care costs themselves or seek local authority help, according to their means.

The combination of this confusion, locally set criteria and the clear financial incentives NHS bodies face to restrict continuing care has predictably led to many people being wrongly denied full funding.

Following the ombudsman’s highly critical 2003 report, which said health authorities were using overly restrictive criteria, the DH estimated that the resulting retrospective reviews of those denied continuing care would cost the NHS £180m.

But there is evidence that the problem is far from being solved.

Campaigners claim that around the country criteria are in operation which are not compliant with the Coughlan judgement – that is to say Pamela Coughlan would be denied continuing care under them.

John Mercer, whose brother Colin was denied continuing care by Liverpool PCT, says he has come across a number of cases of people with lesser needs receiving full funding, simply because of where they live, including Coughlan.

He says: “Colin is paralysed from the neck down. He has associated lung and colon problems. He has problems breathing. If he doesn’t require it, who does really?”

Jo Webber, deputy policy director of the NHS Confederation, says: “While social care charges for services and health care does not, there will always be issues.”

Eligibility thresholds
But the crucial question is where the threshold will be set for eligibility.

Derek Cole, legal adviser to the anti-charges campaigners, says: “We are saying that the new framework should comply with the Coughlan test – that is to say that if the framework were applied to the five people involved in the Coughlan case they would be judged eligible.”

However, Cole also claims that the costs of Coughlan compliance across the country will be huge, running into tens of billions of pounds, if it were applied retrospectively.

He adds: “It would wreck the public sector borrowing requirement.”

That being the case, and given sizeable deficits in the NHS and the prospect of a tight comprehensive spending review next year, will this be a cost the government is willing to pay?

As Webber says: “We are not in a system that is open-ended in terms of costs.”