Health Authority criteria unlawfully leaves elderly paying for care until 'deaths door' - Burstow

Local MP and Liberal Democrat Spokesman on Older People, Paul Burstow used his speech to the Sutton Seniors Forum (Friday 28th Feb) to slam the old Merton Sutton and Wandsworth Health Authority and its successor the South West London Strategic Health Authority for writing care funding rules that made sure that frail and vulnerable local residents would have to be on 'deaths door' before the NHS would pay for their healthcare.

Last year Mr Burstow published a report, Who Cares, Who Pays? to draw attention to the way the NHS was denying funding for the continuing healthcare to people with chronic medical conditions. Mr Burstow asked the Health Service Ombudsman to investigate the matter and report to Parliament.

The Health Service Ombudsman made her report last month (Feb 20th) and said that there is evidence that the Department of Health's guidance has been 'misinterpreted and misapplied by some health authorities and trusts, leading to hardship and injustice for some individuals'. The Ombudsman recommended that Health Authorities should review their criteria and check back through past decisions to find people who were wrongfully denied NHS funded long term care.

Paul Burstow MP said:-

"Up and down the country the NHS has been refusing to take responsibility for the healthcare of elderly people and instead shunting them off to the social services. Local rules have been drawn-up by the NHS to decide who gets free healthcare and who does not. What the Ombudsman has confirmed is that far too many Health Authorities have been using unfair or even unlawful rules."

"Locally in order to qualify for NHS funded continuing care you have to be at deaths door. That's what the rules said in so many words until October last year. Now the new rule put it in black and white, to qualify a person must be in the final stages of a terminal illness and likely to die within 3 months! At best these local rule are misleading, at worst they break the law, either way they are a disgrace.

"It is very important that people who think they are their relatives have been wrongfully denied NHS funding over the last six years start checking now. The message is clear that they may have been forced to run-down their life savings."

"ENDS"

"Notes to editors:-"

"Copies of Mr Burstow's speech are available on request."

"Up until October 2002 Sutton a person could only qualify for funding from the NHS if he or she has at least 2 of the following:"

"• A need for mechanical ventilation"

"• Intravenous or gastrostomy feeding requiring daily specialist nursing supervision"

"• Double incontinence which cannot be controlled/managed by the use of drugs, toileting regimes, catheterisation, or incontinence pads/sheaths, and which contributes to a very high risk of skin breakdown because of daily, widespread contact of skin with urine and faeces"

"• Total immobility, because of total or sub-total loss of muscle power and/or tone such that the patient cannot assist in any way, or because of gross obesity: two or more people required to change position: need for specialist equipment to prevent pressure sores developing or deteriorating further"

"• Multiple drug therapy requiring administration by Level 1 registered nurse for prolonged period: drug regime requires consultant review more often than once a month"

"• Unconscious; persistent vegetative state; major impairment of ability to communicate because of cognitive deficit or sensory impairment."

These criteria were replaced last October with the following:

1/ is in the final stages of a terminal illness and is likely to die within 3 months;

or

2/ is in permanent vegetative state, where the diagnosis has been confirmed by an appropriate specialist;

or

3/is in need of ongoing treatment under the terms of the Mental Health Act 1983 (Section 3);

or

4/ has a very high level of socially disturbed or disinhibited behaviour, e.g. wandering, persistent shouting or verbal aggression, violence towards others, self injury, inappropriate incontinence or sexual behaviour, or refusal to eat or drink, which places self or others at substantial risk or harm and/or is extremely difficult to manage outside a specialist environment;

or

5/ has at least three of the following characteristics:

a) an inability to maintain own airway;

b) parenteral or gastrostomy feeding requiring daily intervention by a registered nurse;

c) double incontinence that cannot be controlled/managed by the use of drugs, toileting regimes, catheterization or pads and which contributes to a very high risk of skin breakdown because of frequent and widespread contact of the skin with urine or faeces;

d) totally bedbound, requiring more than 2 people and/or the use of lifting and handling equipment to change position;

e) multiple drug therapy requiring administration by a registered nurse prolonged period and frequent consultant review

f) a major inability to communicate needs and wants because of cognitive or dual sensory impairment

g) a need for ongoing and frequent direct intervention from qualified health care professionals other than registered nurses, in order to prevent avoidable deterioration in health

h) a need for specialist equipment for which registered nurses need to be immediately available to ensure its safe and appropriate use

i) a need for prompt access to an appropriate multi-disciplinary team in order to manage a deteriorating condition

Anne Abrahams, the NHS Ombudsman, last week published a report "NHS funding for long term nursing care" recommending that many former Health Authorities should be refunding nursing home residents who have been illegally forced to fund their own care. The report states (text in bold is our emphasis):

'22. It was nearly two years from the time of the Coughlan judgment before further substantive guidance was issued, and in some health authorities little progress seems to have been made in reviewing their eligibility criteria during that period. There is a significant group of patients whose nursing care cannot be regarded as merely incidental or ancillary to the provision of accommodation which a local authority is under a duty to provide, or of a nature which a social services authority could be expected to provide. 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.

23. Since October 2001 the Coughlan judgement has rather less significance as regards eligibility for NHS-funded continuing care (for people who otherwise had to pay the cost of care - including nursing care - in a care home themselves) because care provided by registered nurses is now funded by the NHS. But the impact of the judgement reaches back some way: the judgement elucidated the law as it was, it did not introduce a change in

1999. Even before then it was contrary to the law for health authorities to operate criteria which were out of line with the law, as explained in the judgement. I would not regard their choice of criteria as maladministrative between 1996 and 1999 if the criteria were in line with national guidance. However, I take the view that health authorities still have a responsibility, in the light of the Coughlan judgement, to remedy injustice to patients flowing from any criteria which are now known to have been unlawful. I therefore think it only right for health authorities who have used criteria out of line with the judgement at any point since April 1996 (when it first became mandatory to have written criteria), to attempt to identify any patients who may wrongly have been made to pay for their care in a home and to make appropriate recompense to them or their estates.

24. It is impossible for me to estimate how many people might be affected and the potential total cost of making such payments: but I recognise that significant numbers of people and sums of money are likely to be involved. I also recognise that the responsibilities of the health authorities involved transferred to new strategic health authorities in October 2002. Furthermore the relevant budget will now be held by primary care trusts, not the new authorities. I can see that none of this will be easy to resolve: but that is not a reason for me to refrain from expecting a remedy for those who have suffered an injustice.

31. I do not underestimate the difficulty of setting fair, comprehensive and easily comprehensible criteria. The criteria have to be applied to people of all ages, with a wide range of physical, psychological and other difficulties. There are no obvious, simple, objective criteria that can be used. But that is all the more reason for the Department to take a strong lead in the matter: developing a very clear, well-defined national framework. One might have hoped that the comments made in the Coughlan case would have prompted the Department to tackle this issue. However efforts since then seem to have focused mainly on policy about free nursing care. Authorities were left to take their own legal advice about their obligations to provide continuing NHS health care in the light of the Coughlan judgement. I have seen some of the advice provided, which was, perhaps inevitably, quite defensive in nature. The long awaited further guidance in June 2001 (see paragraph 11 and Annex) gives no clearer definition than previously of when continuing NHS health care should be provided: if anything it is weaker, since it simply lists factors authorities should 'bear in mind' and details to which they should 'pay attention' without saying how they should be taken into account. I have criticised some Authorities for having criteria which were out of line with previous guidance: except in extreme cases I fear I would find it even harder now to judge whether criteria were out of line with current guidance. Such an opaque system cannot be fair.

Her recommendations include:

• Review the criteria used by their predecessor bodies, and the way those criteria were applied, since 1996. They will need to take into account the Coughlan judgement, guidance issued by the Department of Health and my findings;

• Make efforts to remedy any consequent financial injustice to patients, where the criteria, or the way they were applied, were not clearly appropriate or fair. This will include attempting to identify any patients in their area who may wrongly have been made to pay for their care in a home and making appropriate recompense to them or their estates.

• Consider how they can support and monitor the performance of authorities and primary care trusts in this work. That might involve the Department assessing whether, from 1996 to date, criteria being used were in line with the law and guidance. Where they were not, the Department might need to co-ordinate effort to remedy any financial injustice to patients affected;

• Review the national guidance on eligibility for continuing NHS health care, making it much clearer in new guidance the situations when the NHS must provide funding and those where it is left to the discretion of NHS bodies locally. This guidance may need to include detailed definitions of terms used and case examples of patterns of need likely to mean NHS funding should be provided;

• Consider being more proactive in checking that criteria used in the future follow that guidance;

• Consider how to link assessment of eligibility for continuing NHS health care into the single assessment process and whether the Department should provide further support to the development of reliable assessment methods."

"Background"

" "

"• Since the 1990 NHS and Community Care Act more and more frail, vulnerable and disabled older people have been forced to pay for their own care. This process has been directed by Government guidance. In 2000, a report commissioned by the clinical audit unit of the NHS found that one third of all people placed in nursing homes were inappropriately placed"

" "

"• The case of R v North and East Devon Health Authority (ex Parte Coughlan) C.A. (1999) 15th July made it clear that local authorities cannot legally provide nursing and related care unless it is ancillary to accommodation and social care, as this is an NHS responsibility."

" "

"• At the end of 1999, The Royal Commission on Long Term Care recommended that the way to close this growing gap between law and policy, would be to make all personal care the funding responsibility of the NHS."

" "

"• In May 2001 Paul Burstow published a report The scandal of long-term care under Labour A survey of the number of people forced to sell their home to pay for nursing or residential care which concluded that 63,000 people per year were forced to sell their home to pay for care. "

" "

"• In March 2002 Paul Burstow published an analysis of the Government's free Nursing Care Scheme 'Putting the Fee into 'Free' Nursing Care How 'free' nursing care became a zero sum gain for the elderly' explaining how the scheme falls short legal requirements. "

" "

"• A PQ answer (DH5579/2002) showed the Government only expected to increase the number of NHS funded patients in nursing homes by some 600 per year."

" "

"• Paul Burstow MP wrote to the Ombudsman in December 2002 requesting that an anonymised report on these cases be prepared for Parliament assessing their public policy implications. "

" "

" Who Pays? Who Cares?"

" "

"• In October 2002 Paul Burstow published 'Who Pays, Who Cares' a report containing his own analysis of local criteria which found a majority of local policies to be inconsistent with the Coughlan Judgement, it concluded: "

" "

"• The fundamental issue is the wording of R v ex parte Coughlan and the scope of NHS liability (as opposed to social services liability) for continuing care, regardless of the form of words used in local eligibility criteria."

"• Ministers and Health Authorities continue to fudge the wording to obscure total liability for NHS care in nursing homes where a person has 'health needs' (the Registered Nurse Contribution Scheme only contributes a proportion of nursing costs according to gradations of need) because it is in their interest do so. It means that there have been thousands of home and other asset sales forced through unlawfully by Social Services Departments for which public authorities are legally and financially liable."

"• The legal question of whether someone is entitled to free NHS case is really very simple but rarely applied - Do they have identifiable health needs? If so, the presumption in law is that the NHS must pay for their care. By definition, most Nursing Home Residents have 'health needs'; this is the case for those with Alzheimers, Dementia, Parkinsons, GBS, and other degenerative conditions prevalent amongst the oldest elderly. "

"• The plain wording used by Lord Woolf makes it very clear what duties are intended by the NHS Acts in contrast to the role of social services."

"• More recently issued criteria are not necessarily any more Coughlan compliant and have one overwhelming element in common with the old criteria; they attempt to limit liability for 'health needs' to the most serious conditions. For effective compliance, criteria must follow the wording of the judgement itself, rather than substituting other words in an attempt to limit what may be understood as 'health needs' and thereby evade legal responsibility."

"THE NUMBERS"

"• Professor Hamnett's London University 1995 study found that 40,000 homes were sold to pay for care in 1995. "

"• A survey of local authorities by Paul Burstow MP showed that 70,000 homes had been sold to pay for care in 2001. "

"• Using a stable increment of 5,000 homes sold per year to pay for care, the following estimate can be made:"

"Year No. of homes sold"

"1995 40,000"

"1996 45,000"

"1997 50,000"

"1998 55.000"

"1999 60,000"

"2000 65,000"

"2001 70,000"

"2002 75,000 (10 months - 62,500)"

" "

"Mr Burstow is urging people to take the following steps if they think that they may have a case:-"

"There are several different levels of complaint; you can, off course, pursue them simultaneously:"

"1. Assessment: It may be that you/your relative have never been assessed for continuing care needs. You are entitled to ask for an assessment of your continuing care needs as part of a "comprehensive single assessment''. Your GP or hospital doctor should be able to arrange this.

2. Review Panel: Ask for a review of your case. By law the relevant authority must establish an review panel, if requested to do so, to check that the proper procedures have been followed in reaching decisions about the need for continuing care and to ensure that the health authority's eligibility criteria are applied properly and consistently. The panel should be independent; that is to say not involving staff, mangers or specialists party to the original assessment, and chaired by independently recruited chair (not on the staff or management of either the Social Services or Health Authority).

3. Official Complaint: If you are think that the health authority's eligibility criteria are overly restrictive, or that the type and location of the NHS continuing care services are inappropriate, you should make an official complaint. All NHS authorities have a formal complaint procedure, so you should DEMAND a copy of the 'Complaints Procedure.' Mark your letters 'Official Complaint' and address them to the Complaints Manager. If rejected, asked for an 'External Enquiry' or 'Independent Review' of the Complaint

4. Investigation by the NHS Ombudsman: The Ombudsman is an independent public body established by Parliament to investigate reported cases of mal-administration; its recommendations are not binding on health authorities but are usually followed. The Ombudsman does not have to investigate every complaint put to him, but will normally do so if there is evidence of hardship or injustice. (020 7217 4051 http://www.ombudsman.org.uk/hse/index.html)

5. Starting legal proceedings: Although it is possible to commence legal proceedings as an unrepresented 'litigant in person' you should not consider this step without at least consulting a solicitor, who will probably instruct a barrister if you want to proceed with your case. Legal proceedings can be a very costly and time-consuming business. However, if you have a well- grounded case, starting legal proceedings may force the Health Authority to offer you a settlement. There are two types of proceedings:-

• Judicial Review - To challenge the validity of decisions taken under unlawful eligibility criteria - in effect you are challenging the criteria themselves. This type of action must be commenced within six months of the unlawful decision.

• Civil Action - To challenge the Health Authority for breach of statutory and duty of care. These cases are very hard to establish in the context of continuing care, and should be brought within three years.