Continuing Care

NHS continuing care is a term that refers to care that is fully funded (that is, to which the service user or patient makes no financial contribution). Continuing care is for people who do not need to be cared for in an acute hospital but who have a high level of health care needs. Typically such care is provided in a care home or hospital, but it can be provided in any setting including the patient’s own home. Whether or not people receive continuing care is determined by reference to ‘eligibility criteria’ that were introduced in 1995. Over time there has been a significant change in the nature and location of continuing care provision. The closure of many long-stay hospital wards and community hospitals has been paralleled by the development of considerable provision of private and voluntary sector residential and nursing home care. It is widely believed that many people who in the past would have been cared for in continuing care beds in hospital are now more likely to be accommodated in care homes. However, while the former was free of charge, the latter is more likely to be viewed as ‘social care’ and to entail means testing and charges for the service user. This issue has been the focus of growing controversy for several years and was critical to the establishment of the Royal Commission on Long Term Care in 1997.The central recommendation that was rejected by the Government that all nursing care and personal care should be provided free has continued.

Continuing Care in Camden
Continuing Care for older people and younger disabled people is provided across the independent nursing home sector and this will increasingly be commissioned in preference to hospital-based care in the Mental Health and Social Care Trust (MHSCT) and Camden PCT provider beds. Patient preference is increasingly for care at home and cost considerations are now being taken into account in offering care packages.

NHS Blog Doctor

The government is now trading on your deepest, darkest emotions and fears. So many wish to buy into the Macmillan nurse myth to protect themselves from the horror of dying. You think the government is talking about better home care for cancer patients. I am all in favour of that, but that is not what this is about. The media has also been taken in. It too believes the government is talking about cancer care. See today’s spread in the Times. I warn you now that the government has a hidden agenda in announcing its recent policy statements about your “right” to die at home.
The real but hidden agenda is ominous. It is about cost cutting. About further reductions in NHS care. The government is marching fraudulently under the banner of cancer care. This is not about cancer care. This is about kicking granny out of hospital. It is about the large number of old, frail people with multiple medical diagnoses; a bit of prostate cancer; a bit of breast cancer; a bit of COPD; a bit of arthritis; a bit of heart failure; a bit of dementia; the residual weakness and slurred speech of an old stroke and so on and so forth. These people are all dying. They can be kept comfortable (if they are lucky) but they are beyond medical salvage. These people are “cluttering up” medical wards, surgical wards, and orthopaedic wards. Because they do not have precise single diagnoses like “bowel cancer” the hospices show little interest and even if they did, they do not have the beds. So instead, too ill to go home, too ill for a nursing home (even if there were a bed available) they are kept in hospital, always at the far end of the ward, as far as possible from the nursing station. If your relative is in hospital you can tell when the doctors and nurses have lost interest. Interest in a patient is proportional to the reciprocal of the distance of the bed from the nursing station. Hospital doctors call these patients “crumble”. They are all in God’s waiting room.
We used to call it “crumble” when I was a hospital doctor. “Crumble” is a derogatory word for a group of patients who have nothing acutely wrong with them, but not much right with them either. (source)
The government hates them. They are bed blockers. They are expensive. They are stopping the hospitals from hitting targets. We have an ageing population. With each day, their numbers grow larger. These are the people who are going to be given the “right” to die at home. Indeed, soon it will be their duty to die at home. The government is going to turf them out of hospital to free up medical beds. Doesn’t matter if they cannot walk and are faecally incontinent, they must have their “right” to die at home. These patients are “terminally ill” but not in the way the media understands. Too ill for nursing homes, these poor people still need round the clock nursing care, often for months on end. Nursing care that their elderly relatives cannot provide at home. Soon they will be sent home with a care “package” – a nursing auxiliary popping in for four hours a week.

You have been warned.

Older people with conditions not in QOF getting worse care 15 Aug 08
The quality of care for older patients is substantially poorer for conditions that are not incentivised by the Quality and Outcomes Framework, a new analysis reveals. Primary care academics have claimed unincentivised medical conditions associated with older age – including osteoarthritis and osteoporosis – are being crowded out by conditions for which GPs are paid financial rewards. Overall, 75% of people received the right treatment for conditions in the QOF, but only 58% of people were given the correct treatment for non-QOF conditions. For example, the treatment of 83% of patients with ischaemic heart disease was deemed to be appropriate by an independent medical panel, but just 29% of recommended care was given to patients with osteoarthritis. Similarly, osteoporosis (53%), urinary incontinence (51%) and falls management (44%) scored lower for quality of care. A higher quality of care was provided for general medical conditions (74%) than geriatric conditions (57%), including referral for cataracts and hearing problems.

The study of 8,688 people aged 50 and over assessed the quality of care of 13 different conditions using a composite measure based on 32 clinical and seven ‘patient centred’ quality indicators in 2005. The researchers, who publish their study in the BMJ today, concluded the standard of care for people aged over 50 with conditions associated with older age is poor, and urged the inclusion of more geriatric conditions in future versions of the GP contract. Dr Nick Steele, lead researcher and senior lecturer in primary care at the University of East Anglia told Pulse: ‘The quality of care of conditions associated with older age has suffered while other public health conditions have gotten a higher profile. ‘It may be that for incentivised conditions GPs operate almost on auto-pilot and are much more used to delivering the correct care. Whilst other conditions, that aren’t in the QOF, get neglected and are not so much a part of medical training – patients are much more reliant on an individual GP’s knowledge and ability.’ In an accompanying editorial, Professor Bruce Guthrie, professor of primary care medicine at the University of Dundee, wrote: ‘The quality of health care for older adults has important deficiencies. This applies particularly to “geriatric” conditions that cause high morbidity, like deafness and osteoarthritis, and that are currently excluded from routine measurement and incentivisation. This finding reinforces evidence that performance management of particular measures risks creating tunnel vision and crowding out improvement work for other care.’

Looking after patients with dementia

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II've an "idea about dementia" Lewis

The government has a protocol which determines how it responds to any new, or newly perceived, crisis in health care. Let us suppose that the latest crisis involves condition X. The protocol goes like this:

1) Announce a 'new' strategy

2) Criticise GPs for the lamentable way that they are currently treating X

3) Feed stories to the media about the poor way X is being treated

4) Commit the government to 'raising public awareness' of X

5) Pledge to investigate ways to improve the management of X

6) Pledge to instruct doctors how better to do their jobs

7) Introduce new clinics to improve the early diagnosis of X

8) Introduce and fund new “key workers” to deal with X

9) Say that X is a “huge problem and set some new targets for early diagnosis.

It has just happened with 'dementia'.

Have you noticed? The management of dementia has been a problem throughout my medical career. With an ageing population, the incidence is rapidly increasing and will accelerate. The lack of nurses, the lack of psychiatric services and the closure of many long stay mental hospitals has made the management of the condition ever more difficult.

Over the last eleven years the government has reacted to the problem by surreptitiously trying to rebrand dementia as a social problem rather than a medical problem. That way, sufferers have to pay for their own care

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Age Concern case study

The daughter of a care home resident made a formal complaint to the home after her mother had experienced delays in obtaining medical assistance for a respiratory infection. The daughter also complained to CSCI and to the local authority, which was funding the care home place. As a result of this complaint, the resident was given 28 days’ notice to leave the care home. The home relied on a clause in the contract stating that it could be terminated following ‘any circumstances or behaviour which the home feels may be seriously detrimental to the home or welfare of other service users.’

CSCI declined to deal with the complaint apart from during the course of their next planned routine inspection. The local authority also refused to investigate as it claimed that its complaints procedure only applied to block bookings of care home places, rather than individually purchased places. During the period of notice, the resident became ill and was admitted to hospital. The home refused to

allow her to return when she was ready for discharge – even though she was still within her notice period. The resident was subsequently moved to another home where she died two months later.

Subject: Continuing Care extracted From Health Service Journal

Health secretary Alan Johnson has called for a 'national debate' on how we will meet the needs and costs of an ageing population. Yet, less than a month after it was launched, his consultation is in danger of being sidetracked by a witless bureaucratic fix that misses the point and won't work. Officials working on the forthcoming social care green paper are exploring a proposal to shift control of £7bn of adult social care from councils to a Department for Work and Pensions agency, which would then hand out cash to individuals to manage as personal care budgets.

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Camden Care Homes report

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Legislation:

Local involvement networks: referrals of social care matters (1) Subsections (2) to (5) apply where a local involvement network refers a matter relating to social care services to an overview and scrutiny committee of a local authority.
(2) The committee must—
(a) acknowledge receipt of the referral; and
(b) keep the referrer informed of the

committee’s actions in relation to the matter.
(3) The committee must decide whether or not any of its powers is exercisable in relation to the matter referred.
(4) If the committee concludes that any of those powers is exercisable in relation to the matter,

the committee must decide whether or not to exercise that power in relation to the matter.
(5) The committee, in exercising any of those powers in relation to the matter, must take into account any relevant information provided by a local involvement network.
(6) The Secretary of State may by regulations make provision as respects determining the time by which a duty under subsection (2)(a) is to be performed.

It is interesting to note that the Act only

talks about referrals of social care provision but not healthcare. We have taken advice on this and have been told that there is nothing to stop the LINk referring healthcare provision concerns to the HSC.

Camden plan looks like strategy for elderly care on the cheap 10 July 2008
Councillor Martin Davies wrote to thank people for contributing to the consultation on who should run Camden's care homes (H&H letters July 3). This is part of what, back in 2004, was part of the Elderly Persons long-term care strategy.

On the surface, Camden appears to be going into a much improved caring regime. Nobody can argue that our sheltered housing and residential care homes need modernising. But is this part of an overall strategy or merely a further means of getting care on the cheap?

Since May 2006 the cost of community meals has gone up by 25 per cent. Home care, now means-tested, has been put up to £13.50 per hour, a price that many old people cannot afford. Luncheon clubs may be replaced by meals on wheels.

The plans are to sell off the four sites on which Camden's four care homes are sited and to provide two new care homes with 120 places. The question on whether these homes should be run directly by Camden or somebody else was consulted on earlier and the clear majority of respondents wanted this to be Camden.

To quote the current consultation document itself: ''Nearly half of those respondents wanted management to remain with Camden.... and over one third supported another organisation''. Obviously the present administration did not like the answer.

The council's preferred option is that they would give the construction, maintenance and running of the homes to an outside firm on the basis that this would offer ''a similar service more efficiently and cost effectively'' as ''the private sector does not have the same level of overhead costs that the local authority has''.

One suspects that this refers to wage levels and such things as training costs and pensions.

There is absolutely no documented evidence that handing over the construction and running of the homes to an external party would be more efficient and cost effective.

When I used the Freedom of Information Act to try to get more information the council hid behind the 'prejudicial to commercial interests' excuse.

What we do know is that the present Camden-run service is very highly independently-rated and valued by residents and carers alike.

We also know that the vast majority of cases where elderly abuse and appalling care conditions have been found, has been where homes have been run by organisations which are not local authorities.

I hope my understanding of this document is wrong as by the time the homes are built I may well be in need of a place in one of them!

Mick Farrant

Oak Village, NW5

“everyone who receives social care support, regardless of their level of need, in any setting, whether from statutory services, the third and community or private sector or by funding it themselves, will have choice and control over
how that support is delivered. It will mean that people are able to live their own lives as they wish, confident that services are of high quality, are safe and promote their own individual requirements for independence, well-being and dignity. “

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A National Framework for NHS funded long-term care
The Government is determined to establish a simpler, more consistent, system of assessment to determine eligibility for full NHS funding of long-term care. The main goal of the proposed National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care in England that comes into force with effect from 1 October 2007 is a common set of rules for Continuing Healthcare that will.......click he re

Care of the elderly: Britain counts the cost of rise in dementia. Major study shows how an ageing population will put a massive strain on resources Sunday, 25 May 2008

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The state of social care in England 2006/7 : Executive summary

"Report on what is happening to people seeking support who are not eligible for council-arranged care or who fund their own care. (this is essential background reading for the Camden Health Forums next meeting presentation regarding Continuing Care)" more ....

The trend towards tightly circumscribed council help with social care needs does not sit well with the personalisation agenda and with wider conceptions of health and well-being.

Increasingly using signposting as a way of diverting demand, but rarely know what happens to people signposted out of care-managed support.

Existing performance measures appear to reveal relatively little about how councils behave towards people who are judged to lie outside their criteria. This underlines the central importance of developing an outcomes-based framework for evaluating councils performance.

Tightening eligibility criteria does not curb demands for support. People with ostensibly eligible needs are not gaining access to services.

80% of people 'concerned' about elderly care

Eight in 10 people are "very concerned" about the quality of care they will receive when they get old, a new survey by Age Concern revealed today. The poll also showed that 40% of people are not even confident they will be treated with dignity or respect when they need assistance, despite a government campaign to address this.
Elderly people currently accessing care have told Age Concern that some carers offer very poor quality support. Examples include the wrong medicines being given and records of dosage not being kept. Some people have complained that carers were failing to turn up or falling asleep on the job. One carer recorded that an elderly woman was asleep upstairs at home, when she was away in hospital. Others have reported that carers were failing to meet basic hygiene rules and not wearing gloves when bathing clients.

One in five care homes and home care providers do not meet the minimum standards for residential care set by the Commission for Social Care Inspectorate, according to Age Concern. Around 400,000 older people live in a care homes. The Government launched its Dignity in Care campaign in November 2006. Its goal was "to eliminate tolerance of indignity in health and social care services".
Age Concern is launching a new campaign - the Big Q - to challenge politicians to take action to improve the standard of care for older people. The Government will launch a public consultation on the issue later this year.

The poll, of 2,006 adults, showed concern about the quality of care increases with age. Seven out of 10 (72%) of 18 to 35-year-olds said they were "very concerned" about the care they or a family member would receive but this rose to 87% of people aged over 75. Gordon Lishman, director general of Age Concern, said: "People are fed up with fighting to get the care they need in later life, either for themselves or for their loved ones. "The care system clearly isn't working, which is why radical reform is urgently needed. The Government urgently needs to set a timetable for change, so that people can be sure they are not being fobbed off." Mr Lishman warned that without increased funding, the standard of care was likely to get worse. He said: "Even if nothing changes in the way social care is provided, we will need to be spending an extra GBP14 billion per year on care by 2026 - taking the total spend up to GBP24 billion per year. "Without that cash, the quality of care is going to go down, and our expectations of what we will get will be even worse than it is now." Liberal Democrat health spokesman Norman Lamb said: "This Government has presided over a shocking collapse in services for the elderly. "Ministers have responded to the warnings of a looming crisis with criminal under-funding. "Councils simply aren't able to provide social services fairly under the current system of funding. The Government should stop dithering and start fundamental reform now. "Liberal Democrat proposals for a personal care payment would ensure a fair deal for all elderly people who need personal care and put an end to the criminal injustice of poor access to social care."
A Department of Health spokeswoman said: "Creating a new care system is a top Government priority. We want to give people more control over services and enhance their quality of life. "The Government has committed to a process of extensive public engagement on the long-term reform of the care and support system and leading to a Green Paper identifying key issues and options for reform. "We will be announcing the details very shortly." She added: "In December last year we announced an extra £500 million of ring fenced funding to support councils to radically transform services over the next three years. The extra £500 million will be given to councils as a 'Social Care Reform Grant' to help them redesign and reshape their systems. The social reform grant will help to fund the redesign of social service systems in every community."

Care that was previously provided in the NHS by doctors, nurses and others, and paid for from NHS funds, is increasingly being provided outside the NHS, whether in a nursing or residential home, or in people's own homes. The means of paying for this care, which was once simply automatically funded by the NHS free at the point of delivery, as any other NHS care would be, has now become infinitely more complex. If a patient is eligible for NHS continuing care, the entire costs will be met by the NHS. However if a patient is not deemed eligible for NHS continuing care but requires long-term residential care, the 'hotel' costs, for board and lodging, and 'personal care' costs, will be funded either by local authorities or by the resident themselves, or by a combination of the two.The application of fair access to care criteria is tightening so that only people with critical and substantial needs in some councils will receive any service at all. This is despite the counter-intuitive belief that prevention and early intervention result in increased independence and reduced long-term care costs.

In nearly every inquiry undertaken in recent years, the absence of a unified health and social care structure has been identified as a serious stumbling block to the effective provision of care. The problems relate to structure, financial accountability and, fundamentally, to the distinction between health care, which is mainly free at the point of delivery, and social care, which is means-tested and charged to the individual. The evidence we have received in this inquiry once again indicates that the artificial distinction between health and social care lies at the heart of most of the difficulties that have arisen concerning eligibility for continuing care funding. In evidence to a previous Health Committee, Frank Dobson MP, the then Secretary of State for Health, was asked to give a definition of the division between health and social care, and responded that he could not. Over six years on, representatives from SHAs and PCTs and Local Authorities, all senior officials working at the interface of health and social care on a daily basis, were similarly unable to supply a definition.

Continuing Care facts

WHAT THE HOMES DO

RESIDENTIAL CARE HOMES are staffed by helpers who aren't state registered nurses. They typically cost about £23,000 a year

NURSING HOMES are staffed by qualified nurses because the residents need round-the-clock nursing care. They are more expensive, costing an average £32,600 a year. Some homes offer both nursing and residential care.

WHETHER a person needs residential or nursing care depends on not how ill they are but how predictable their condition is. For example, they could have severe dementia but need only residential care rather than 24-hour-a-day nursing care.

ARITA SKEET'S mother, Dorothy Spicer, 98, has been in a nursing home in Congleton, Cheshire, for five years. Dorothy (pictured with Rita in 1946) went into the home in 2003 for a short while after becoming ill. After a brief stay in hospital, she decided to move into the home permanently. Rita, 69, her only child, sold her mother's home for £190,000 and used £32,800 to buy an immediate needs care plan with advice from Help The Aged to cover the shortfall between Mrs Spice's widow's pension and her state pension, in order to pay the fees, which are £1,873 a month. The plan with Partnership Assurance Increases by 5 pc a year and now pays £912 a month. Mrs Skeet says: 'It sounds a lot of money to pay, but I'm delighted we did it this way. I know it's a gamble, but it's given me peace of mind and we've definitely had our money's worth.'

WHERE TO GET HELP

Age Concern, 0800 009966
or www.ageconcern.org.uk

Carers Line, 0808 808 7777
or www.carersuk.org.uk

Counsel and Care, 0845 300 7585 or
www.counselandcare.org.uk

Help The Aged, 020 72781114 or www.helptheaged.org.uk

NHFA, 0800 998833

Saga Care Advice, 0800 056 8152

The Commission for Social Care Inspection,
www.csci.org.uk

The National Centre for Independent Living, 020 75871663 or www.nciLorg.uk

R v North and East Devon Health Authority ex p Coughlan
Miss Coughlan was grievously injured in a road traffic accident in 1971. She is tetraplegic; doubly incontinent, requiring regular catheterisation; partially paralysed in the respiratory tract, with consequent difficulty in breathing; and subject not only to the attendant problems of immobility but to recurrent headaches caused by an associated neurological condition (para 3 judgement).

The court concluded at para 3:
The secretary of state accepts that, where the primary need is a health need, then the responsibility is that of the NHS, even when the individual has been placed in a home by a local authority…Here the needs of Miss Coughlan…were primarily health needs for which the Health Authority is as a matter of law responsible.

Leeds Ombudsman Report Case No E62/93-94 January 1994
A man suffered a brain haemorrhage and was admitted to a neuro-surgical ward…He received surgery but did not fully recover. After 20 months in hospital he was in a stable condition but still required full time nursing care. His condition had reached the stage where active treatment was no longer required but that he was still in need of substantial nursing care, which could not be provided at home and which would continue to be needed for the rest of his life (para 22 of report).

The importance of this assessment was emphasised in NHS guidance EL(96)8 which (at para 16) criticised continuing care statements which placed an ‘over-reliance on the needs of a patient for a specialist medical supervision in determining eligibility for continuing in –patient care’ and specifically referred to the fact that this was not considered by the ombudsman in the Leeds case as an acceptable basis for withdrawing NHS support.

Wigan and Bolton Health Authority and Bolton Hospitals NHS Trust Case No E420/00-01106
Mrs N had suffered several strokes, as a result of which she had no speech or comprehension and was unable to swallow, requiring feeding by PEG tube (a tube which allows feeding directly into the stomach). Mrs N was being treated as an in-patient in the Trust’s stroke unit and was discharged to a nursing home (p24, para 1).

Health Services Commissioner concluded (at p32, para 30)
I cannot see that any authority could reasonably conclude that her need for nursing care was merely incidental or ancillary to the provision of accommodation or of a nature one could expect Social Services to provide (para 15). It seems to clear to me that she, like Miss Coughlan, needed services of a wholly different kind.

Dorset Health Authority and Dorset Health Care NHS Trust Case No E208/99-00107
Mr X suffered from Alzheimer’s disease and admitted to a nursing home (p11, para 1) and allegedly receiving services very similar to Miss Coughlan’s (p20, para 23).

Health Services Commissioner concluded (at p21, para 26)
I… recommend that the… Authority should, with colleague organisations, determine whether there were any patients (including Mr X senior) who were wrongly refused funding for continuing care, and make the necessary arrangements for reimbursing the costs they incurred unnecessarily…Mr X senior suffered a degenerative condition, so he was more likely to be eligible for funding as time went by.

Berkshire Health Authority Case No E814/00-01108
Mrs Z, a 90-year-old admitted to a hospital suffering with vascular dementia (p35, para 1) and in need of ‘all help with daily living, except feeding’ and resistant to help and needing supervision if she was to take the medication she needed (p38, para 12).

Health Services Commissioner concluded (at p46, para 39)
It is certainly very possible (but not entirely certain) that, if appropriate criteria had been applied, Mrs Z would have qualified for fully funded care.