A national scandal?

Current elderly care arrangements have been criticised

For over a decade the system for funding long-term nursing care has been in disarray.

The current arrangement has been criticised by both the Health Service Ombudsman and a House of Commons Select Committee as "impossible to administer" and "beset with complexities".

"Some of our most vulnerable populations," according to the select committee, have been "unjustly denied continuing care" resulting in "suboptimal care and financial hardship".

Indeed, there can be little doubt from these separate reports that for many years the struggle to establish who should fund care has sometimes eclipsed the more important question of the patient's actual needs.

Health Service Ombudsman: NHS Funding for Long Term Care. HC399, February 2003

Following a series of complaints and subsequent investigations, in February 2003 the ombudsman decided that it was in the public interest to publish its findings.

The NHS Funding for Long Term Care Report reviewed the legal and policy framework from 1994 onwards and acknowledged that problems in the system were likely to be widespread.

The ombudsman's principle conclusions were that:

• "The Department of Health's guidance...has not provided the secure foundation needed to enable a fair and transparent system of eligibility for funding for long term care to be operated across the country."

• "The effect has been to cause injustice and hardship to some people."

Accordingly, the report recommended that Strategic Health Authorities (SHA) and Primary Care Trusts (PCT) should "review their criteria taking into account the Coughlan judgement and Department of Health guidance."

Flawed criteria

Moreover, the ombudsman declared any consequent financial injustice to patients should be remedied, "where the criteria, or the way they were applied, were not clearly appropriate or fair".

At the end of February 2003, in response to the ombudsman's report, the Department of Health issued a reply requiring all SHAs to:

• Investigate whether continuing care criteria in use since 1996 were consistent with the Coughlan judgment.

• If criteria were not consistent with the judgement, determine when this was identified and what action was taken.

• Estimate the number of people who may have been wrongly assessed under criteria not consistent with the Coughlan judgment.

The review process associated with this statement took longer than originally anticipated and by March 2004 the NHS had completed only 57% of outstanding investigations.

Nevertheless, by this date, the NHS estimated the expected total pay out in partial and full restitution claims was likely to exceed £180m.

Health Service Ombudsman: NHS Funding for Long Term Care: Follow Up Report HC144, December 2004

In December 2004, the ombudsman issued a follow-up review prompted by the receipt of a further 4,000 complaints since the publication of the first report.

Inadequate improvements

Grievances with the system fell into two broad categories:

• There were those, mainly "frail, elderly people who have been trying unsuccessfully to obtain and understand the criteria for funding continuing care in their area."

• There were complainants who were dismayed at the unreasonable delays involved in receiving restitution for retrospective injustices.

In relation to this point, Dr Stephen Ladyman, Secretary of State for Community, in a written statement to the Commons, said that in total the NHS expected to pay around £180 million in restitution.

The scale of the problem was also acknowledged by the ombudsman who noted that claims for retrospective funding were far higher than initially expected.

Whilst recognising that progress had been made, the report stated that the procedural improvements were inadequate and "did not go far enough". As a consequence, it recommended the Department of Health needed to:

• "Establish clear, national, minimum eligibility criteria which are understandable to health professionals and patients and carers alike."

• "Develop a set of accredited assessment tools and good practice guidance to support the criteria."

• "Monitor the progress of retrospective reviews and use the lessons learned to inform the handling of continuing care assessments in the future."

The ombudsman has since issued checklists that show the way she and her staff investigate complaints with regard to retrospective continuing care funding and restitution.

Click here to see the checklists

"It is not for the ombudsman to issue guidance to those responsible for responding to requests for retrospective continuing care funding in cases.

"That is for the Department [of Heath]. However the checklists are consistent with existing good practice advice and the ombudsman hopes that these tools will be of assistance to SHAs and PCTs when planning and conducting continuing care assessments and reviews and communicating recommendations and decisions."

House of Commons Health Committee NHS Continuing Care: Sixth Report of Session 2004-2005 Volume I : Report, together with formal minutes, oral and written evidence

House of Commons Health Committee NHS Continuing Care: Sixth Report of Session 2004-2005 Volume II: oral and written evidence

Draconian

In April 2005, the Health Committee declared that "despite the considerable investment by government in recent years, we are no closer to a fair and transparent system that ensures security and dignity for people who need long term care, and which promotes their independence."

Health care has been redefined as social care without primary legislation or debate...This has resulted in many vulnerable people and their families being forced to pay for health care which should be the responsibility of the NHS and free at the point of delivery The Law Society

Evidence presented to the health committee came from a variety of sources. Mackintosh Duncan, the instructing solicitors in the Coughlan case, were unequivocal in declaring where blame for the present situation should lie:

"It has been caused by the refusal of the government to accept and implement the judgment of the Court of Appeal. Criteria applied now are more draconian than prior to the [Coughlan judgment] and shift responsibilities unlawfully onto social services."

The Law Society was equally scathing, concerned ultimately that:

"Health care has been redefined as social care without primary legislation or debate... This has resulted in many vulnerable people and their families being forced to pay for health care which should be the responsibility of the NHS and free at the point of delivery."

Recognising the evidence submitted to it contained "very serious charges which the government must answer", the health committee identified numerous shortcomings in the present system.

The most serious remains the absence of a unified health and social care structure:

"We are convinced that so long as there are two systems operating according to quite different principles, the highly controversial issue of which patients qualify for fully funded NHS care, and which have to contribute some or all of the costs of care, will remain."

It recommended that "the government remove... the wholly artificial distinction between a universal and free health care service operating alongside a means-tested and charged for system of social care."

Absurd situation

This problem has been further complicated by the debate around what should constitute "personal care" and "nursing care". This has led to the "absurd position where carers providing complex medical support for their loved ones are denied fully funded continuing care at home because they are not registered nurses".

We urge the government to put right this confusion and end unnecessary bureaucracy immediately House of Commons Health Committee

Another difficulty identified by the health committee was the existence of two separate systems for assessing eligibility for fully funded NHS continuing care contributions and for the NHS contribution to means-tested funding, the registered nursing care contributions (RNCC).

"Fundamentally both systems are doing the same thing, which is determining NHS funding of ongoing health care...We urge the government to put right this confusion and end unnecessary bureaucracy immediately."

Coughlan-compliance was also raised as an issue requiring urgent attention. It was suggested that eligibility criteria should ensure that "all people whose primary need is for health care will receive fully funded care."

Furthermore, the committee recommended the criteria should be applied nationally in order to remedy the current unfairness of the 'postcode lottery.'

"It is unacceptable that in one part of the country a person with a specific set of care needs would be assessed as qualifying for fully funded care, while a person with identical needs living in a different part of the country would be deemed ineligible."

'Perverse system'

A further concern for the committee was described as the way in which "current eligibility criteria are heavily weighted towards physical needs to the detriment of mental health and psychological needs".

The system was described as "perverse" in cases such as Alzheimer's Disease where:

"The further a person's illness progresses, the less likely they are to qualify for continuing care funding, even though they in fact need more intensive health care to maintain a good quality of life."

Finally, the committee believed it "shocking" that the current onus was wrongfully placed upon patients or their relatives to request an assessment for continuing care.

Rather, "all patients with continuing needs should be offered an assessment automatically, before they leave hospital".

Budgetary pressures

Overall it is difficult to avoid the conclusion, supported by the health committee and ombudsman, that decisions in this area of healthcare "are often driven by budgetary concerns rather than patient need".

Equally clear is that responsibility for funding long term care has in essence been shunted from the NHS to local authorities, individual patients and their families.

Bringing the continuing care system back totally within the remit of the NHS would cost, according to the government, £1.5 billion at today's prices. Such expenditure is likely to rise steeply in the future as a result of people living longer.

However, whilst Dr Ladyman believed such spending priorities were "unsustainable", the select committee disagreed: "We maintain that with political will, the resources could be found to fund free personal care.

"Moreover the costs of providing [care] need to be offset against the current administrative costs associated with policing the divide between health and social care," it said.