Feature

posted 13 Apr 2004 in Volume 9 Issue 3

NHS-funded home care: The Cambridgeshire complaint

The important case of Malcolm Pointon

Many readers will be aware, through recent press coverage, of the successful outcome of a complaint made to the Health Service Ombudsman by Barbara Pointon, concerning the care of her husband Malcolm. In 1999 Barbara and Malcolm were the subject of an acclaimed television documentary called ‘Malcolm and Barbara – a love story’, which followed the couple for four years as they coped with Malcolm’s Alzheimer’s disease. Caroline Bielanska describes what happened next as Barbara repeatedly encountered and overcame obstacles for getting help. The complaint raises once again, the issue of respite for carers, flaws in the assessment process and of continuing NHS healthcare in one’s own home.

Malcolm Pointon was diagnosed with Alzheimer’s disease in 1991, aged 51. Until 1998, he was being cared for in his own home, after which he moved into a nursing home. He was initially offered a fully funded NHS bed, but as it was not suitable for his needs, Barbara moved him to another care home. The NHS would not agree funding to follow him to the new home and so social services and Barbara funded his care until March 2000, when he moved back home. As Malcolm needed two full-time carers, Barbara received direct payments to part fund one carer, while she acted as the second unpaid carer. Barbara met the shortfall in cost personally and so asked the health authority to assess Malcolm for continuing NHS healthcare in the hope they would recognise his needs and contribute towards the cost.

By the end of 2000, Malcolm’s mobility had gone; he was doubly incontinent, unable to feed himself and at times had problems swallowing. He had no speech and little comprehension. His visual perceptions were diminishing and at times he hallucinated and suffered panic attacks. He also had myoclonic jerks, fits and Parkinsonian rigidity.

In February 2001, following the request, Malcolm received a multi-disciplinary assessment of his care needs. The assessment was designed for people who had physical and acute problems and was not intended by the NHS to test Malcolm’s requirement for continuing NHS healthcare. There was only a half-inch section for people with mental-health problems, with no consideration given to the service user’s psychological needs. Barbara had prepared a list of her husband’s problems with the care and strategies needed to deal with them. A third of the list contained psychological problems and the balance physical problems, but it was ignored in the discussions. The conclusion was that Barbara could manage on her own with one other person attending for short periods in the morning, lunchtime, teatime and bedtime. As Malcolm did not require a registered nurse to provide this care, it was considered to be social care – a social services responsibility, which would be means tested. Malcolm’s healthcare needs were being met by the district nurse visiting him three times a week.

During 2000 until June 2001, Malcolm received respite care in a specialist NHS unit one week in five, but it stopped after his dementia became too severe for the staff to deal with. Barbara asked if the NHS would fund a person to replace her at home on the same basis.

In August 2001, a further assessment was undertaken (although later shown not to have been recorded), with a decision made in November. An extra carer was offered to replace Barbara for one hour in the morning, one at lunchtime, half an hour at tea time and one hour at bedtime for six days every five weeks. This, however, was to be social care. This was illogical as Malcolm’s care needs had increased, but the respite assessed as being needed was less than he had previously received.

In January 2002, a formal complaint was lodged with the Health Authority, as well as a request for a review of the November 2001 decision that he did not qualify for NHS-funded care in his own home and NHS-funded respite.

By March when nothing had happened, a complaint was lodged with the Ombudsman.

In April 2002, the newly-formed PCT wrote to request a further assessment of Malcolm. They wished for this to take place in hospital but Barbara stood her ground and he was assessed at home. The district nurse undertook the assessment but she asked few questions. The criteria only allowed for care to be provided in a hospital or a care-home setting. The resulting decision showed that large amounts of Malcolm’s care needs had been overlooked and that the PCT felt that his condition had not deteriorated to the point where his care needs were unpredictable or unstable, requiring frequent intervention or reassessment by a trained nurse during a 24-hour period. The test she applied to determine whether any given task was a nursing or a non-nursing one was whether it was necessary to replace a carer with a qualified nurse. The Ombudsman complaint was to be pursued.

In August 2002, the family obtained a report by an independent consultant in dementia, who concluded that Malcolm had terminal-stage dementia that could hardly be more severe and that he met the criteria for NHS-funded care, as his health condition was severe, complex and unpredictable. All care was related to health needs as they all arose directly from his brain disease. Importantly, it confirmed that if Malcolm was not being cared for at home he could only be cared for in an NHS continuing care ward. The level of care he was receiving in his own home was equal, if not superior to the care he could receive on a long-stay NHS dementia ward. His care included complete physical care, dealing with perplexing behaviour, fits, finding ways of communicating, giving frequent reassurance and providing 100-per-cent vigilance. This was confirmed by a subsequent report conducted for the PCT by a consultant geriatrician.

Eventually, by November 2002, the PCT conceded that Malcolm qualified for NHS-funded care but the cost implications meant that the PCT would only meet his need in a nursing-home setting. The NHS could only fund care in his own home, where community-based health services were inadequate, by paying an agency nurse, which is more expensive than direct provision in a hospital. As a consequence, Barbara maintained the status quo with social services means-tested funding. The health respite, however, was agreed by way of direct payments. How this was achieved is covered later in this article. In September 2003, during the period of the Ombudsman’s investigations, the Health Authority unexpectedly agreed to fund the whole £1,000 cost of care, which was equivalent to the cost of a hospital bed.

Ombudsman’s conclusions and recommendation

The multidisciplinary assessment in February 2001 should have been performed against the health authority’s criteria for continuing health care, in that medical input should have been included and it should have taken note of the Coughlan requirement to judge both the amount and the type of nursing care required. In a situation such as this, with a patient whose mental and physical condition was inevitably going to deteriorate, it was shortsighted not to explore both the physical and psychological problems, with a view to the kind of support that would be needed in the near future;
The policy and eligibility criteria for dementia, which were used to assess Malcolm’s needs, both for health respite and continuing health care, focused on the difficulties of behaviour, such as violence and risk, but did not provide for mood changes, delusions, hallucinatory experiences and visual/spatial difficulties, which are common problems with advancing dementia. The criteria for individuals with sensory and/or physical disabilities appeared to be based on their physical needs and the requirements of individuals with illnesses, which required palliative care, ventilation and medical intervention. The criteria, although Coughlan1 compliant did not fully comply with the relevant Department of Health guidance in that the assessment tools were focused towards acute care, and made no provision for the psychological needs of an individual with a mental-health problem;
The criteria appeared to offer little provision for caring for individuals in their own homes and mainly focused on acute care. This practice may not be compliant with the Department of Health guidance HSC 2001/015:LAC (2001) 18. Proper consideration was not given to Malcolm’s eligibility. In particular, they relied on inaccurate or inadequate information, failed to take account of relevant facts and took account of irrelevant factors in their assessment. They also failed to recognise that the standard of care provided by Barbara was equal to that which a nurse could provide and her preference to nurse him at home caused them to be penalised;
The decision to reduce respite from one week in five down to a few hours a day for six days every five weeks was taken without any regard to the health authority’s policy on short-term admission or respite and one must question why the respite care should drop so dramatically;
The PCT may need to take into consideration the needs of carers, in accordance with the Carers and Disabled Children Act 2000;
The PCT should review the eligibility criteria to ensure that the criteria for funding care at home, and the recognition of patients’ psychological as well as physical needs, are clearly defined.

The important implications of this case

A decision of the Ombudsman is not legally binding and as such creates no precedent, but most public bodies respect the decision and in the majority of cases will follow the recommendations. The case can be used as persuasive argument for future clients.

The quality of the assessment is vital

Even if the eligibility criteria are lawful, the key to success in obtaining funding is in the quality of the assessment. As in this case, if the assessor fails to take into account relevant factors or conversely takes into account irrelevant factors, the NHS body will not arrive at the correct decision.

Advisers need to obtain thorough details about the care needs of their client. This includes: which person undertakes each care task; how long it takes; and the skills required. Personal, physical, psychological, medical and nursing needs should be identified:

Personal needs include feeding, dressing, washing and toileting, and are usually undertaken by a care assistant or, as in the case of Barbara Pointon, a family member;

Physical care such as dealing with immobility is usually undertaken by a care assistant or informal carer;
The psychological needs can be met by a care assistant, an informal carer or a skilled nurse, such as dealing with mood swings and hallucinations;
The medical and nursing needs, such as prescribing and administering medication or using specialist medical equipment is usually provided by doctors and/or nurses, although the administering of medication is often managed by informal carers and care assistants.

As the responsibilities of each task vary, full details need to be obtained. Advisers need to have a good understanding of the nature of the illness and associated problems. The notion that the patient simply has Alzheimer’s is outdated, unhelpful and even irresponsible. It is a complex illness, with a variety of challenging symptoms. Understanding the illness enables the adviser to ask the right questions as to the health and care needs of the patient.

Quality of the assessment tool

If the assessment tool does not marry with the eligibility criteria, confusion occurs and an incorrect decision may be made. You can make a rough judgement of the quality

of the assessment tool by applying the Coughlan test. That is, if you applied the care needs of Pamela Coughlan to the assessment tool, would the same lawful decision be reached? Also, if the tool is more restrictive than the criteria, a wrong decision may be reached. For example, if the tool requires that the client needs consultant care to be eligible, this will not be Coughlan compliant, although the criteria itself may make no mention of this and be lawful. The tool should address all the care issues that the individual has, including the psychological needs.

The use of independent medical reports

If the assessment has been properly conducted, it will contain full and accurate details of the care needs. Until the adviser has seen the assessment and the basis on which a decision has been made, it is not necessary to obtain independent medical evidence. However, if a stalemate is reached between what the patient, family or carer feel the care needs are and what the PCT assessor thinks the needs are, the time is right to obtain a medical report. Getting a medical report earlier would only be appropriate if the client might die in the foreseeable future, without a record of their disabilities being properly documented. Photographs and videos may also be useful as evidence.

Ideally, the suitable doctor will be of consultant level and have an expertise in the healthcare needs of the individual’s illness or disability. They should be independent of the PCT. You will need to provide all medical evidence and assessments to date as well as the eligibility criteria and any tool used by the PCT in making their determination.

Continuing NHS health care and health respite can be provided in one’s own home

Coughlan established that the location of care should not be the sole or main determinant of eligibility, which has been incorporated into Department of Health guidance. Continuing NHS healthcare and respite healthcare may be provided in an NHS hospital, a nursing home, hospice or in the individual’s own home2.

Criteria may say little about the location of care, although some may provide that such care is limited to provision in a hospital or nursing-home setting. It is common for those who have continuing healthcare needs, who wish to live in their own home, to receive healthcare via community-health services, such as physiotherapists and district nurses. Informal carers often undertake the key nursing role until they can longer manage, which is when they make the difficult choice of moving the cared-for person into an institutional setting.

What this case makes clear is that carers do have real choice. This will become more realistic when local policy catches up with what people want. In a recent survey, just under 90 per cent of people want to receive palliative care in their own home. The research estimated that the cost to the NHS would be £100m but the savings to NHS hospitals would be in the region of £200m3. If these figures are accurate, then there is a financial incentive to promote the choice of NHS-funded home care.

Health respite should be considered even if they do not appear to qualify for social respite

Help from social services is dependent on the individual’s eligibility. The Census in 2001 identified that 9.5m people have disabilities that affect their activities of daily living and 5.2m provide care ranging from 19 to over 50 hours per week. The majority of carers get little or no help. In a survey week in September 2003, 581,000 households received home care arranged by social services4. The statistics are not broken down into how much of this was respite care, but one may assume that the majority of support will be given to those who have no one to help. Support from social services is not guaranteed and, as was highlighted in the Pointon case, the assessment of need for social respite was considered to be less than the need for health respite. All too often, carers fail to get sufficient or any respite on the basis that they do not qualify, but if one were to apply for health respite they might.

Practitioners need to be aware of the criteria for health respite and assist carers in getting this. This may be achieved by using PALS5, CABs, Carers, advocacy or outreach services, without any cost to the client. Every area varies as to the number and types of agencies that can assist and practitioners should become familiar with what is available in their locality and forge positive links.

Unpaid carers may provide skilled care on a par with registered nurses

Barbara was considered to be providing skills that were not only equal, but exceeded that given by a trained nurse, and the care was better than would have been provided on a continuing care ward. The assessor had used the wrong test in determining eligibility. It was not whether the carer needed to be replaced by a registered nurse to undertake the role but the Coughlan ‘quality and quantity test’, that is, an individual may qualify for NHS-funded care even though their care needs can be undertaken in the main by someone other than a registered nurse or medic. The problem with the incompatibility between the registered nursing care (RNC) and continuing NHS healthcare assessment is apparent, as partial funding for the former is dependent on the RNC input, but the RNC is not dependent for the full funding of the latter.

Delays in assessing, reviewing and handling of complaints should be challenged

In the Pointon case, Barbara experienced delays in the assessment and review of Malcolm and in the handling of the complaint. Advisers should not accept unreasonable and excessive delays. Cases should be reviewed within weeks, not months or, at worse, years. These types of cases demand a proactive attitude. Do not leave matters to informally drift by. Formalise the review and/or complaint. New directions6 provide that a review of the decision should occur within two weeks – hold the PCT to this.

Carers’ wishes should be taken on board

It is difficult to agree with the Ombudsman’s finding that the PCT may have to consider the needs of carers under the Carers and Disabled Children Act 2000 as this Act applies only to local authorities. Unlike social services, the NHS does not have a duty to undertake a carer’s assessment. However, under the single assessment process7, the best practice discharge guidance, the Delayed Discharges (Continuing Care) Directions 2003 and 2004, the NHS body should consult with any carer when assessing the patient.

The use of direct payments

Where the local authority has decided after assessment, under a section 47 of the NHS and Community Care Act 1990 or under section 2(1) of the Carers and Disabled

Children Act 2000, that it needs to provide the individual with community care services, subject to a number of safeguards, the local authority must offer direct payments8.

The payment can be made to the individual, his attorney or any one the local authority decides but cannot be made for services provided by relatives or a cohabittee living in the same household.

The NHS is not authorised to make direct payments, but they can transfer funds or pool budgets to or with social services to commission care9. Social services are then able to make direct payments to the service user who commissions the necessary service. Social service provision is subject to means-testing but they have a huge discretion for domiciliary care and can make no charge10. Direct payments create flexibility and choice for many, such as Barbara Pointon, but users also have to take on extra responsibilities when becoming an employer, such as entering into contracts, setting up tax records with the Inland Revenue and understanding employment rights. For many, the extra responsibilities outweigh the benefit, so they are used in the minority of cases.

The Pointon case highlights many inadequacies in the current system, which despite guidance, directions and best-practice policies, leaves not only service users, but also the NHS confused as to how they are to be implemented.

References:

R v North and East Devon Health Authority ex parte Pamela Coughlan [2000] 3 All ER 850
LAC (2001)18/ HSC (2001) 15
Marie Curie Cancer Care – March 2004
National Statistics 2003: Home Care Services – Department of Health, March 2004
Patient advice and liaison services are based in local hospitals
Part 4, The Continuing Care (National Health Service Responsibilities) Directions 2004
LAC (2002) 1/ HSC (2002)1
Community Care, Services for Carer’s and Children’s Services (Direct Payments) (England) Regulations 2003 [SI 2003/762]
S29-31 Health Act 1999
s17 Health and Social Security and Social Services Adjudication Act 1983

Caroline Bielanska is a solicitor, TEP, lecturer and freelance consultant. She is also co-chair of Solicitors for the Elderly, and can be contacted by telephone on: 0149 217 717 or by e-mail at: caroline.bielanska@ntlworld.com.