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Last Updated: Friday, 21 July 2006, 19:06 GMT 20:06 UK
A growing scandal: Will changes work?
Panorama reporter Vivian White
By Vivian White
Panorama reporter

The long-awaited National Framework for NHS Continuing Healthcare and NHS funded Nursing Care in England has been published as a consultation document.

The consultation ends on September 22.

It comes from the Department of Health following criticism of the existing criteria for fully-funded NHS care from strategic health authorities. Three other documents accompany it.

I have read all of this and here I try to answer some of the questions you might have about the framework.

You can also read it for yourself, of course, and find out how to get involved. And you can read analysis by charities and a law lecturer by following the links below.

An end to the postcode lottery?
In the government's view the big improvement is that the framework should remove any significant local differences in criteria. The health minister Ivan Lewis told us: "The simplification of the system, moving away from the postcode lottery which has undoubtedly annoyed people over many, many years, to a national rate for the funding of funded nursing car will ultimately improve the system for people."

But the lawyer in the Coughlan case, Nicola Mackintosh denies that. She points out that this is just a new draft framework for the professionals to apply the rules on the ground: "In order for it to be applied properly you would have to have local eligibility criteria which brings us back to the same postcode lottery as we've had all these years."

Will the new system be lawful?
And will the system now respect the Coughlan test, the case in the Court of Appeal in 1999 which defined where the line between free, NHS care, and means-tested local authority 'social care' is meant to be drawn?

Yes, says the Government and the consultation document states: "If an individual's primary need is a health need, they should qualify for NHS Continuing Healthcare, in which case the NHS would be responsible for providing all of their care."

But in the next paragraph it says that assessment if whether there is a primary health need "will make reference to four key indicators - nature, complexity, intensity and unpredictability of need."

The system's critics says these terms are in practice used not as a tool for assessing whether there is a primary health need but a substitute for it, a way of posing a different question instead.

Nicola Mackintosh says: "I think they're becoming the test itself."

She contends that "the legal line, I think is drawn in the wrong place. It would mean that people whose primary need is for health care are still going to be excluded."

Under new proposals there will only be one band for what's called a Registered Nursing Care Contribution (RNCC) instead of three at present. This is the system under which the NHS, having said that a nursing home resident is NOT entitled to free care and defined their care as 'social care', then makes a contribution towards that part of the time that they are cared for by a registered nurse.

Only one of the 41 residents at Wren Hall Nursing Home in Nottinghamshire gets free, fully funded, care.

The rest are defined as only needing social care, with a RNCC. The health minister Ivan Lewis, defending the system, tells Panorama: "There's always been a means tested element to social care and frankly no government could afford, in my view, if you look at the demographics of this country, to create a system where social care was exclusively free. What we've introduced for the first time as a government is free nursing care that was never available in this country previously."

No change?
Overall, the consultation document frankly states that "The National Framework will not change the extent of services that can be provided free of charge, nor will it alter the underlying policy on continuing care."

Nicola Mackintosh says that as result people will go on unlawfully being denied free care to which they are entitled and go on being forced to sell their homes to pay for it. She tells Panorama: "It is a missed opportunity. Instead of all the doctors, all the nurses, all the social workers, the relatives, carers and residents being put forward put through the agony of continuing injustice it would be much better if that money which was spent on resolving disputes, doing assessments, was actually spent on health care."

And she says: "I think we need to have a full and frank debate about what the NHS is going to pay for and what it's not going to pay for, and that has to result in new legislation, because if we are saying that vulnerable people who are in nursing homes are no longer in need of healthcare which is effectively the consequence of this, it's redefining health care as social care, then we need to have a full debate about this in parliament."

What the charities think of the framework

Panorama approached Age Concern, The Alzheimer's Society, Help the Aged and The Royal College of Nursing for their views on the new framework.

Panorama approached representatives from Age Concern, The Alzheimer's Society, Help the Aged and The Royal College of Nursing to give us their views on the new framework.

Age Concern logo
Age Concern
Gordon Lishman the director general of Age Concern said: "Continuing care is broken and the proposals in this consultation will not fix it.

"We welcome the proposals to simplify the system from three bands to one, however the rate set at 97- is simply not high enough to cover all the costs of nursing care in care homes. Older people and their families will be forced to cover this shortfall to pay for their own nursing care.

"This proposal will leave in place many of the main inconsistencies and unfairness in continuing care. It has already been outlined by the courts that many who should have received NHS care have not, and this will continue under these proposals.

"The government has revealed that 'only' one in five of those who should have got continuing care have not got the money they should. This amount of people negatively affected is an abomination and, unfortunately, these figures are just the tip of the iceberg.

"These new criteria will not succeed unless there is an attitude shift within the NHS to recognise that people who need long-term care may still be the responsibility of the NHS and so must be funded accordingly."

Alzheimer's Society logo
The Alzheimer's Society

  • The current consultation on continuing care criteria is long overdue. For years people with complex conditions such as dementia and those who care for them have battled to get the care which they need and deserve funded. Some have succeeded as Panorama has shown. But often only after a fight. The challenge for policy-makers is to reform a system which is discriminatory in both its design and practice.

  • Historical accident explains who gets care from doctors and nurses (which is free on the NHS), and who gets care from care assistants employed by social services (which is subject to the means test). The current system of NHS continuing care is the awkward compromise in between the two which tries to explain when someone's 'health' needs become so great that their care becomes the responsibility of the NHS. For people with dementia who get much of their care from social services' care assistants this accountant's trick means they are often excluded from receiving continuing care and they end up having to pay for care which is the direct result of their medical condition.

  • When people reach the later stages of dementia they will be bed bound, incontinent, unable to recognise their family and friends or eat or wash without help. Despite this the current continuing care guidelines mean that people in the later stages of dementia are being told that they cannot have fully funded continuing care because their needs are "stable and predictable". This is unacceptable. We hear many cases of people being taken off continuing care when they reach the later stages of dementia, often when their dependence is at it's height.

  • The latest consultation says that if someone's overall care needs show that your primary need is a health need you will get continuing care. This is something which has always been said about the current regime so we are concerned about whether the new regime will deliver better solutions for people with dementia.

  • We are evaluating the current guidance to see whether it will mean that more people with dementia have access to the fully funded care.

  • We welcome the commitment to a national set of criteria which will aid transparency. However, we are concerned that the amount available to pay for nursing care is proposed to fall. Care homes should be able to explain how much is spent on nursing care for each person in their care and then the NHS should just reimburse it, whatever the amount.

  • At a time when the government is increasingly talking about strengthening the links between health and social care can we cannot go on with a system which says that people who get NHS care get it free and people who rely on social services are means tested. Rather than continuing to mess around with continuing care criteria - which will always by their nature remain discriminatory, we need to have a wider public debate about the balance between the individual and the state on the question of who pays for health and social care.

    Help the Aged logo

    Help the Aged
    The Continuing Care Framework must deliver, or more older people will bear the brunt of unfair care costs, warns Help the Aged.

    As the Framework for Continuing Care is launched for consultation, Help the Aged is urging the Government to think about people and not money.

    Jonathan Ellis, policy manager at Help the Aged said: "The new proposed framework should help to bring welcome relief to thousands of older people put through the complexities of the current NHS funding system for long term care, but the Government has some way to go before it can fully redeem itself.

    "The current system for long term care has seen thousands of older, vulnerable people short changed when, by rights, they may be eligible for fully funded NHS care.

    "Time and again, the existing local criteria used by the NHS to decide who is eligible for fully funded care has been criticised, challenged and even overturned, and there is a strong onus upon the Government to provide clarity. Help the Aged will be studying these new proposals in detail to make sure that they are fair and equitable.

    "Even in the midst of the current NHS budget crisis, the new framework must tackle the unfairness that older people have in securing their right to fully funded NHS care . It should not be used to control costs by toughening eligibility criteria instead."

    Royal College of Nursing logo
    Royal College of Nursing

    Responding to the Framework for Continuing Care, Pauline Ford, Royal College of Nursing advisor for older people, said: "Whilst the proposals launched today may be a first step in overcoming the postcode lottery of continuing care, there is still a long way to go if patients and nurses are to have confidence in the system.

    "At the moment continuing care remains unavailable or unaffordable for many people because eligibility guidelines are applied inconsistently across the country. Too often this leads to people having to sell their homes to pay for care which should be funded by the NHS.

    "The RCN has long called for one single band of funded nursing to replace the existing three bands and whilst we are obviously delighted that this has been taken on board, we are dismayed that the maximum amount now available for nursing care has been set at just 97 per week.

    "This would buy just seven and a half hours of registered nursing per week and in no way reflects the real costs of nursing people with long-term, complex health needs.

    "While we hope that the new system proposed today will provide greater transparency about funding decisions, it remains to be seen whether this will result in greater numbers of people accessing funded health care.

    "Crucially, the definition and assessment of funded care will remain central to the process and the RCN will be looking in detail at the implications for patients and the nurses who care for them."

    The RCN is calling on nurses and members of the public to engage fully in the consultation and will be announcing arrangements for its members to participate shortly.

    Law lecturer Luke Clements
    The legal expert

    Luke Clements is a reader in Law at Cardiff Law School and solicitor at Scott-Moncrieff Harbour & Sinclair in London. He has evaluated the framework in detail for the Panorama web site. Here is the summary or you can

    Luke writes: "The consultation document fails The Coughlan Test, in that Miss Coughlan would not qualify for NHS Continuing Care Funding under the new regime.

    "The proposed National Framework Document fails to address almost all the problems that have been identified with the current NHS Continuing Care arrangements. It seeks to patch up a system that has been roundly condemned by persisting with criteria that are not Coughlan-compliant and have been rejected as opaque, unfair, inaccessible and at times incomprehensible.

    "The new scheme is unlikely to result in many more people being identified or supported by the NHS to seek Continuing Care Funding

    "The new scheme contains no concrete measures to address the severe delays that commonly occur in assessing those potentially entitled to Continuing Care Funding.

    "The creation of a single national criteria for NHS Continuing Care is welcome, but the devolution of responsibility for the process to PCTs is in practice likely to worsen the local variations in entitlement to Continuing Care support.

    "The absence in the new scheme of a quick, independent and robust review process (available for both patients and social services) is a major failing.

    "The assessment process detailed in the draft Decision-Support Tool sets the bar for eligibility to NHS Continuing Care Funding at unlawfully high level.

    "The proposed scheme makes no satisfactory arrangements to address the 'entrenched mentality of ineligibility' prevalent amongst NHS and social services staff.

    "The Consultation document fails to address the continuing organisational reality for PCTs - namely that there are no organisational benefits for them to be gained by increasing the number of patients eligible for NHS Continuing Care Funding."



  • SEE ALSO
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    05 Mar 06 |  Programmes

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