Research Letter |
NHS continuing care: reliable decisions?
SIR—Decisions denying free National Health Service (NHS) continuing health care have been reversed by the Health Service Ombudsman from 1994 [1]. From 1996, health authorities published their individual criteria governing eligibility for continuing NHS health care [2]. Concern that criteria were too restrictive led to further guidance [3]. The ‘Coughlan case’ [4] and others reviewed by the Ombudsman [5] revealed people who had been wrongly denied NHS care. Restitution followed, reimbursing individuals or their estates if care had been wrongly denied.Currently, Primary Care Trusts (PCTs) convene panels of senior staff (doctor, nurse, therapist, social worker) to determine eligibility using their Strategic Health Authority (StHA) criteria. Rejected applicants can appeal and another panel may reverse the decision.
The appeals system, however, does not indicate the level of inconsistency amongst panels. To our knowledge, this point had not been explored previously by presenting the same case to panels applying identical criteria. Here we describe a small audit undertaken during 2004 with the support of the Continuing Care Steering Group of the Norfolk, Suffolk and Cambridgeshire StHA.
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Audit standard
The standard was that StHA panels should reach consistent decisions when determining eligibility for continuing NHS health care.
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Method |
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The authors and the StHA designated officer for continuing care examined 110 completed restitution cases and selected 10 to reflect the range of conditions frequently giving rise to applications. The conditions were chronic and usually progressive. The individuals were likely to need frequent attention because of unpredictable health need, or management of challenging behaviour, characteristics often demanded by the eligibility criteria. The aetiologies were dementia, stroke and neurodegenerative diseases. Four panels considered the audit cases alongside other routine ones. Members knew the cases were for audit but were unaware of the previous decisions and had not assessed them before.
Case vignettes
Case 1
Female, 82, Alzheimer’s disease since 1999 with increased wandering day and night and multiple falls, was admitted to an elderly mentally infirm (EMI) care home. She remained intermittently agitated, and verbally and physically aggressive. She required close supervision for her own and others’ safety. She was doubly incontinent, at high risk of pressure sores and required analgesia for arthritis.
Case 2
Male, 73, Parkinson’s disease since 1993 under specialist review, cortical Lewy body dementia and partial seizures in 1998; in 2001 he developed persistent visual hallucinations. He transferred with two people and was prone to falls, wandering at night, with episodes of aggression and difficult behaviour, and was doubly incontinent.
Case 3
Female, 93, dementia and previous stroke, sustained a fractured neck of femur in February 1998, became increasingly dependent requiring hoisting, was doubly incontinent, had episodes of aggression, agitation, low mood, and pain requiring medical and nursing intervention. Three pressure areas required daily dressings. She had occasional chest infections.
Case 4
Female, 84, dementia, poor visual acuity, prone to falling, wandering and was occasionally aggressive towards staff and residents in her care home. She was doubly incontinent.
Case 5
Female, 58, with established multiple sclerosis, became bed-bound over the previous 2 years. She was unable to speak or swallow, had a supra-pubic catheter checked weekly by district nurses who provided complex bowel care. She had a percutaneous endoscopic gastrostomy (PEG) since 2001, monitored by the nutrition team. She developed epilepsy in 2001 with fits every month or so which were normally treated at home and once in hospital in August 2003. Her chest and urine infections were treated at home. A tissue viability nurse supervised skin care. Two periods of respite care in a nursing home resulted in pressure sores which did not recur during later NHS community hospital respite care.
Case 6
Female, 82, declining mobility, falls, dysphagia and dysarthria, was hospitalised in May 2003 and motor neurone disease diagnosed. She wanted to be at home and was discharged with 24 h care. The disease progressed rapidly, she became bed-bound, needing oxygen and had severe pain. She required regular review for her poor swallow and communication needs. She refused a PEG. She had regular general practitioner (GP) visits for her analgesia management, and district nurses monitored her till she died in July 2003.
Case 7
Female, 83, sustained a left hemiplegia abroad, was hospitalised and repatriated directly to a nursing home in August 1996. She required full care, was unable to communicate, had a naso-gastric tube for feeding until October 1996, a urinary catheter, and needed pressure area care. Between August 1996 and her death in January 1998, her GP visited 18 times for urinary tract infections, nausea, vomiting, diarrhoea, mood swings and transient ischaemic attacks. Swallowing problems persisted. She had occasional episodes of restlessness and agitation, and seizures in May, June and September 1997 treated in the nursing home.
Case 8
Female, 88, Alzheimer’s disease since 1997, previous hip replacement, entered a nursing home in March 1998 with increased confusion, wandering and frequent falls which continued; she then sustained recurrent dislocations of her hip between June and December 2000 needing five hospital admissions. She had 12 GP visits from October 2000 until December 2000 for severe pain and dislocations. Oral intake declined. She had a hip brace fitted and still required constant supervision to prevent further hip dislocations. The skin beneath the brace was at risk. She deteriorated in December 2000 and became bed-bound, and died in January 2001.
Case 9
Female, 52, was admitted to hospital in March 1995 with seizures associated with intracranial haemorrhages and cortical atrophy. The history included alcohol abuse and a recent bereavement. She developed behavioural problems, with confusion, severe disorientation, global dysphasia, attention difficulties, lack of initiation, and poor insight and judgement. She was discharged home with a trial of 24 h care failing after 6 days due to her agitated and demanding behaviour. She transferred to a specialised brain injury unit.
Case 10
Female, 81, had multi-infarct dementia and previous stroke. In May 2000, she fractured her left neck of femur, became immobile and entered a nursing home. Between August 2000 and December 2001, she had several falls which were attended by her GP. In May 2002, she developed multiple skin breaks that required tissue viability specialist nurse input. In June, she fractured her right femur and developed pressure sores on her right foot and left heel. She was doubly incontinent and catheterised. In July, she had two seizures, managed in the nursing home. Her GP visited eight times for pain control, seizures and a transient ischaemic attack from September till her death in November 2002.
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Results |
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The four participating panels did not consider all the audit cases, citing pressure of work. Table 1 shows which PCTs were able or unable to complete the audit.
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Agreement
The panels that reviewed cases 1, 2, 3 and 4 agreed that they did not meet the eligibility criteria. All of these individuals had a combination of cognitive impairment, falls, faecal and urinary incontinence, and episodes of behavioural disturbance with periods of aggression and agitation. Panels felt that these needs could be met through the registered nurse care contribution [6].
In cases 5 and 6, the two panels agreed that the eligibility criteria were met over the same time span.
Disagreement
In four cases the decisions differed (see Table 2).
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In case 7, three panels differed. In case 8, two panels decided that the eligibility criteria were not met and two panels would have funded NHS continuing care for 4 and 5 months. In case 9, two panels agreed eligibility for very different time periods.
In case 10, two panels agreed on the extent of NHS continuing care funding and one deemed the case ineligible.
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Discssion |
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This audit demonstrates some inconsistency. In the absence of central guidance, panels have evolved their own interpretation of the eligibility criteria, and processes.
In two panels, every member receives all of the documentation prior to the meeting and they all consider the information against the criteria. In another, each member is allocated a different case(s), receiving the documentation some days prior to the meeting at which they present the case to the rest of the review panel. Members then discuss the case.
This audit was presented to the Continuing Care Steering Group members who wish to improve consistent outcomes for individuals. Regular audit of decision making could be introduced using specific cases from outside the StHA. Another option could be a regular seminar for all StHA panels to discuss cases. These measures could reduce the variability and improve fairness.
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Key points |
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- People can be wrongly denied NHS continuing care
- Panels applying the same criteria can reach very different conclusions on the same cases
- Methods to improve decision making are suggested
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Conflicts of interest |
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The study was unfunded. T.L. chairs the Cambridge and South Cambridgeshire PCTs Continuing Care Professional Review Panel and is a member of the Norfolk, Suffolk and Cambridgeshire Continuing Care Steering Group.
1 Box 135, Cambridge University Hospital Foundation Trust, Cambridge CB1 2QQ, UK Tel: (+ 44) 1223 245151 Fax: (+ 44) 1223 217783
2 Davison House, Brookfields Hospital, 351 Mill Road, Cambridge CB1 3DF, UK Email: madhavi.vindlacheruvu{at}addenbrookes.nhs.uk
* To whom correspondence should be addressed.
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Acknowledgements |
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We are grateful to participating panel members and the StHA Continuing Care Steering Group for their support.
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References |
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- Health Service Commissioner. Second Report for Session 1993–94. Failure to Provide Long-term NHS Care for a Brain Damaged Patient. London: HMSO, 1994.
- NHS Executive. NHS Responsibilities for Meeting Continuing Health Care Needs. HSG(95)8/LAC(95)5. London: Department of Health, 1995.
- Department of Health. NHS Responsibilities for Meeting Continuing Health Care Needs–Current Progress and Future Priorities. Department of Health Circular EL (96) 8. London: Department of Health, 1996.
- The Court of Appeal. Judgment ex parte Coughlan QB COF 99/0110/CMS4. http://www.bailii.org/ew/cases/EWHC/ Admin/1998/1134.html
- Health Service Ombudsman. 2nd Report Session 2002–2003. NHS Funding for Long Term Care. London: The Stationery Office, 2003.
- Department of Health Guidance on NHS Funded Nursing Care. Department of Health Circular HSC 2003/006. London: Department of Health.
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