A survey of memory clinics in the british isles

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INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, VOL 10: 379-385 (1995) A SURVEY OF MEMORY CLINICS IN THE BRITISH ISLES NEIL WRIGHT* AND JAMES LINDESAY~ *Research Psychiatrist, f Professor of Psychiatry for the Elderly, Division of Psychiatry for the Etderly, Department of Psychiatry, University of Leicester, Leicester General Hospital, Leicester, UK SUMMARY This survey describes the characteristics and activities of 20 memory clinics currently operating in the United Kingdom and Eire. There was broad agreement with regard to aims, objectives and general operating characteristics, but the clinics varied considerably in the number of patients assessed over a given period and in the proportion of cases diagnosed with dementia (1 5-98%) and Alzheimer’s disease (9-80”h) in the year prior to the survey. KEY wom-memory clinic; dementia; Alzheimer’s disease The first memory clinics were set up in the United States in the mid-l970s, with the aim of providing an outpatient diagnostic, treatment and advice ser- vice for people with memory impairment, and to act as a focus of research into dementia. A particular purpose of these clinics with regard to dementia was to attract patients in the early stages of their dis- order, before it presented to conventional medical services. Since the establishment of the St Pancras Clinic in 1983, there has been a steady development of clinics with similar aims in the British Isles, but they have been criticized for being overly concerned with research and having a limited role in meeting the long-term needs of demented patients and their carers. In these cost-conscious times, the value for money provided by these clinics has also been questioned. There is no explicitly agreed model of memory clinic functioning. Existing clinics have been set up as local initiatives with particular purposes, and while reports from individual centres in the United Kingdom suggest that they are broadly similar in structure and function (Van der Cammen et al., 1987;Bayer et af., 1987;Philpot and Levy, 1987;Rai and Phonsathorn, 1990; Harrison and Jones, 1993; McMurdo et af., 1993), there has to date been no overall description of their operating characteristics and experience. The purpose of this survey was to provide a description of the characteristics, activi- Address for correspondence: Professor James Lindesay, Leices- ter General Hospital, Gwendolen Road, Leicester LES 4PW, UK. CCC 08854230/95/050379-07 0 1995 by John Wiley & Sons, Ltd. ties and research interests of memory clinics cur- rently operating in the United Kingdom and Eire and to relate this to their performance in terms of the diagnosis of dementia, specifically Alzheimer’s disease. METHODS The aim of this survey was to identify all memory clinics currently operating in the United Kingdom and Eire. No comprehensive list of these clinics exists, so it was necessary to construct one from personal and professional contacts. Pharmaceutical companies with an interest in evaluating potential antidementia drugs were valuable sources of infor- mation in this respect. By these means we identified 20 active memory clinics, all of which responded and were included in the survey (see Appendix). The survey was carried out in 1993. A structured questionnaire was sent to a named individual at each memory clinic, together with a covering letter outlining the purpose of the survey. Clinics that did not respond to the initial request for information were sent a second letter and questionnaire. The questionnaire included items in the following areas: Date of establishment and period of operation Frequency of clinics Number of staff and the professions involved in patient assessment Patient throughput and follow-up Referral sources and policies Received 6 July 1994 Accepted 2 September 1994

Transcript of A survey of memory clinics in the british isles

Page 1: A survey of memory clinics in the british isles

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, VOL 10: 379-385 (1995)

A SURVEY OF MEMORY CLINICS IN THE BRITISH ISLES

NEIL WRIGHT* AND JAMES LINDESAY~ *Research Psychiatrist, f Professor of Psychiatry for the Elderly, Division of Psychiatry for the Etderly, Department

of Psychiatry, University of Leicester, Leicester General Hospital, Leicester, U K

SUMMARY This survey describes the characteristics and activities of 20 memory clinics currently operating in the United Kingdom and Eire. There was broad agreement with regard to aims, objectives and general operating characteristics, but the clinics varied considerably in the number of patients assessed over a given period and in the proportion of cases diagnosed with dementia (1 5-98%) and Alzheimer’s disease (9-80”h) in the year prior to the survey.

KEY wom-memory clinic; dementia; Alzheimer’s disease

The first memory clinics were set up in the United States in the mid-l970s, with the aim of providing an outpatient diagnostic, treatment and advice ser- vice for people with memory impairment, and to act as a focus of research into dementia. A particular purpose of these clinics with regard to dementia was to attract patients in the early stages of their dis- order, before it presented to conventional medical services. Since the establishment of the St Pancras Clinic in 1983, there has been a steady development of clinics with similar aims in the British Isles, but they have been criticized for being overly concerned with research and having a limited role in meeting the long-term needs of demented patients and their carers. In these cost-conscious times, the value for money provided by these clinics has also been questioned.

There is no explicitly agreed model of memory clinic functioning. Existing clinics have been set up as local initiatives with particular purposes, and while reports from individual centres in the United Kingdom suggest that they are broadly similar in structure and function (Van der Cammen et al., 1987; Bayer et af., 1987; Philpot and Levy, 1987; Rai and Phonsathorn, 1990; Harrison and Jones, 1993; McMurdo et af., 1993), there has to date been no overall description of their operating characteristics and experience. The purpose of this survey was to provide a description of the characteristics, activi-

Address for correspondence: Professor James Lindesay, Leices- ter General Hospital, Gwendolen Road, Leicester LES 4PW, UK.

CCC 08854230/95/050379-07 0 1995 by John Wiley & Sons, Ltd.

ties and research interests of memory clinics cur- rently operating in the United Kingdom and Eire and to relate this to their performance in terms of the diagnosis of dementia, specifically Alzheimer’s disease.

METHODS

The aim of this survey was to identify all memory clinics currently operating in the United Kingdom and Eire. No comprehensive list of these clinics exists, so it was necessary to construct one from personal and professional contacts. Pharmaceutical companies with an interest in evaluating potential antidementia drugs were valuable sources of infor- mation in this respect. By these means we identified 20 active memory clinics, all of which responded and were included in the survey (see Appendix).

The survey was carried out in 1993. A structured questionnaire was sent to a named individual at each memory clinic, together with a covering letter outlining the purpose of the survey. Clinics that did not respond to the initial request for information were sent a second letter and questionnaire.

The questionnaire included items in the following areas:

Date of establishment and period of operation Frequency of clinics Number of staff and the professions involved in patient assessment Patient throughput and follow-up Referral sources and policies

Received 6 July 1994 Accepted 2 September 1994

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380 N. WRIGHT AND J. LINDESAY

Clinical and research activities Use of standardized diagnostic criteria Length of assessment Use of psychological tests, physical examination and investigations Proportion of patients receiving a diagnosis of dementia in the previous year Proportion of patients receiving a diagnosis of probable Alzheimer’s disease in the previous year Use of computer databases The questionnaire also gave respondents the op-

portuniiy to describe the; research activities and make any other relevant comments about the func- tion of their clinics. Several respondents included covering letters or literature about their clinic which were useful in interpreting the findings. The survey data were analysed using SPSS/PC+ (1986). Since the number of clinics surveyed by this study was small, and is likely to be closer to a complete popu- lation than a sample, conventional statistical testing of differences between subgroups has not been car- ried out.

RESULTS

Location, establishment and period of operation

Fourteen of the clinics surveyed were in England, two in Wales, three in Scotland and one in Eire (see Appendix). The length of time these clinics had been operating ranged from 2 months to 10 years (mean = 3.9 years). Twelve clinics (60%) had been set up within the last 3 years.

Frequency Most clinics (75%) operated on a weekly basis;

10% operated monthly or bimonthly and 15% held more than one clinic a week.

The number of individuals regularly working in the clinics ranged from 2 to 10 (mode = 3). All clinics provided multidisciplinary assessment of patients, with psychiatrists, geriatricians and psychologists being the health professionals most commonly in- volved (Table 1). Other professionals regularly working in the clinics included nurses, neurologists and speech therapists. In the four clinics without a psychologist, a nurse contributed to the initial patient assessment. In eight clinics without a ge- riatrician, medical input was provided by a psychia- trist (seven clinics) or a neurologist (one clinic).

Table 1. Staffing of memory clinics

Professional group Number of clinics/ frequency of involvement

Always Sometimes N (‘A)) N (X)

~~

Psychiatrist Geriatrician Neurologist Psychologist Nurse Speech therapist Occupational therapist Social worker Neurophysiologist

Patient throughput and follow-up The clinics reported seeing from one to six new

patients per clinic (mean = 2.4). Only three clinics regularly saw more than three new patients in a single clinic session. The level of staffing of the clinics was not significantly related to the number of patients seen per clinic ( r = 0.43). Following assess- ment, 78% of clinics reported that they referred patients on to the local psychogeriatric services. Regular follow-up of all assessed patients was pro- vided by 30% of clinics, with the others following up a proportion of cases only. Clinics operating a policy of regular follow-up assessed fewer new re- ferrals in the year prior to the survey (mean = 57) than did clinics with a policy of selective follow-up (mean = 94).

Referra! sources and policies Most patients were referred to the memory clinics

from general practitioners (100% of clinics), psychi- atrists (85%) and geriatricians (85%). Fifty per cent of clinics reported that they accepted referrals from other sources. Clinics were divided as to whether they accepted ‘all-comers’ (45%) or operated a system to screen out inappropriate referrals (%YO). Eighty per cent of clinics accepted referrals from outside their health district.

Clinical and research activities Dementia was a major interest of all the memory

clinics except one, which specialized in other causes of memory impairment such as organic amnestic syndromes, epilepsy and psychogenic amnesia. Most of the clinics reported that they had a wide

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Table 2. Functions performed by memory clinics

Functions of memory clinics Number of clinics performing

N (%I) ~~~~~~

Specialist assessmen tl’second

Provision of advice and information

Specialist advice on management Screening for non-pharmacological

Onward referral to health and

Screening for drug trials Initiating and monitoring treatment Education and training of

opinion’

to patients and relatives

research projects

social services

professional groups

20

19

18 16

16

15 12 11

range of functions (Table 2). All provided specialist advice on treatment, with 60% actually initiating and monitoring this. Other functions not explicitly asked about in the survey but mentioned by some respondents were detection of treatable causes and reassurance of the ‘worried well’. Overall, 80% were currently actively involved in research projects, and operated a diagnostic and screening service for these. The range of projects mentioned by the re- spondents is shown in Table 3.

Table 3. Research activities reported by memory clinics

Dementia Trials of drug treatment for Alzheimer’s disease

Neuropsychological studies of memory, language

Neuroimaging Genetic studies Epidemiological studies of prevalence and risk

Audit/evaluation of services for carers Functional (ADL) assessment Follow-up studies of diagnosis, progression Other

and vascular dementia

and visuospatial function

factors

Premorbid personality Anxiety and depression in dementia Driving EEG brain mapping Sense of smell in Alzheimer’s disease Computerized testing Insight in demented patients Subjective vs objective memory impairment

Other disorders Memory impairment in non-demented patients Amnestic syndromes: neuroimaging,

neuropsychology, forgetting rates Cognitive effects of pituitary adenomas and

hypophysectomy Forgetting rates in non-demented psychiatric

patients

12

7

6 4 4

3 2 2 1

1 1

1

1

The assessment process

There was a degree of variation in the assessment of patients carried out by the clinics (Table 4). In particular, the time taken to assess patients ranged from 1 to 6 hours (mean = 3.1 hours). However, a number of assessment procedures were carried out by most clinics; all carried out some form of mental state examination, including a wide range of stan- dardized tests of cognitive function and mood (Table 4). The Mini-Mental State Examination (MMSE) (Folstein et al., 1975) was performed in all but one of the clinics (95%); in nine it was carried out as part of CAMCOG (Roth et af . , 1988). In addition, 17 clinics reported the routine use of a wide range of neuropsychological tests. There was no uniformity between clinics with regard to screen- ing for depression; eight inventories or checklists were used, but none by more than two clinics.

A full physical examination was routinely per- formed in 17 (85%) of the clinics and most carried out the battery of laboratory blood tests currently considered useful in the investigation of dementia

(Table 4). By contrast, evaluation of autoantibody levels was performed by only a minority of clinics. Regular neuroradiological investigation is only pro- vided by a proportion of clinics, with 12 (60%) using CT scanning, two (10%) MRI and none SPET, although four clinics (20%) had access to the last for some patients, mainly for the purposes of research.

The proportion of cases with dementia

The proportion of the clinic populations in the year prior to the survey who were diagnosed as suffering from dementia ranged from 15 to 98% (mean = 74.9%) and the proportion diagnosed as having probable Alzheimer’s disease from 9 to 80% (mean = 46.8%). The clinic without a major interest in dementia had the lowest proportion of demented cases. Comparison between clinics in this respect is limited by the fact that not all clinics regularly employ operationalized criteria for the diagnosis of dementia such as NINCDS-ADRA (6O%), DSM-

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382 N. WRIGHT AND J. LINDESAY

Table 4. Routine features of memory clinic patient assessments

Table 5. Differences between clinics with a high and a low yield of probable Alzheimer’s disease ( N = 19)

Investigations Number of memory clinics

N (Oh) ~~ ~ ~ ~ ~ ~~~~

Mental testing Routine use of instruments to

measure cognitive function Routine use of instruments to

measure affective state Rourine p h y s i d investigations Full blood count 20 Thyroid function tests 20 Urea and electrolytes 20

19

9

Vitamin B1*/folate 19 Glucose 18 Liver function tests 17 Syphilis serology 14 Autoantibodies 4 Full physical examination 17 Neuroradiology (CT, MRI or SPET) 13

111-R (60%) and ICD-10 (25%). Only 4070 of clinics maintained a computerized database of their patient population.

Given that screening patients for trials of drug treatments for Alzheimer’s disease is currently a major activity for memory clinics, their perform- ance in this respect was examined further. After excluding the clinic with no declared clinical or research interest in dementia, the four clinics with the highest percentage yield of cases of Alzheimer’s disease (over 65% of all cases seen) were compared with the four with the lowest percentage yield (under 35% of all cases seen). The most substantial differences between them are listed in Table 5. While the high-yield and low-yield clinics were similar in many aspects of their organization and functioning, the high-yield clinics had a much lower throughput of patients and took rather longer to assess them. The professional orientation and staffing also dif- fered somewhat, with the low-yield clinics having more input from geriatricians and nurses.

DISCUSSION

The total number of memory clinics in the United Kingdom and Eire is unknown, but this survey has identified 20 active clinics, over twice as many as

‘High yield’ ‘Low yield’ Mean SD Mean SD

Years in operation New patientdclinic Patients assessed in

previous year How long to assess

patients (hr) Proportion of patients

not demented (“h) Staffing

Psychiatrist Psychologist Geriatrician Nurse

3.6 3.7 1.1 0.3

41.3 16.5

4.2 1.0

7.0 2.5

100% 100% 25% 0%

7.3 0.6 2.3 0.5

149.5 110.4

3.1 0.8

42.8 15.9

loo%, 75%)

100% 75%

another recent review (Harrison and Jones, 1993). Our use of pharmaceutical companies as a source of information may have led to overinclusion of re- search-oriented clinics with an interest in dementia and an underrepresentation of those providing a purely clinical service or with an interest in different causes of memory impairment. This should be borne in mind when interpreting the findings. We hope that this article will encourage any memory clinics not included in this survey to contact us and take part in future follow-ups.

Overall, there was a fair degree of uniformity in the aims and objectives of these clinics. Most appear to have modelled themselves on the original Ameri- can and British clinics, and provide a detailed multi- disciplinary hospital-based assessment service linked to a programme of research projects, notably drug trials for Alzheimer’s disease. Most rely on referral to the local psychogeriatric services for the long-term care of their patients; indeed, the findings of this survey suggest that the rate of assessment of new referrals may be prejudiced by a policy of regu- lar follow-up of all cases. The patient assessment procedure in these clinics differed between clinics in terms of length and content, reflecting differences in the number, professional background and particu- lar interests of the staff involved. However, most clinics shared a common core of tests and investi- gations: a full physical examination; the MMSE; full blood count; urea and electrolytes; thyroid function tests; vitamin B12 and folate; serum glu- cose; and liver function tests. The frequency of use of the MMSE as part of the cognitive function assessment may reflect the fact that this test forms

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part of the recommended minimum data collection in studies of Alzheimer’s disease (Wilcock et al., 1989). In most clinics the MMSE was supplemented by more detailed neuropsychological tests, which are necessary to detect mild impairment, particu- larly in more intelligent patients. A routine battery of laboratory investigations was usual; this may not be indicated clinically, in view of the low positive yield (Brodaty, 1990), but for clinics involved in research projects they are required for the positive exclusion of treatable causes of cognitive impair- ment. The use of neuroradiological investigations by the clinics was lower than expected, with only 65% performing CT or MRI scanning on a regular basis. This may be due to limited resources and restricted access in some centres, or alternatively some clinics may not regard these particular investi- gations as useful for their purposes.

The findings of this survey suggest that, despite their broad operational similarities, clinics have dif- ferent strategies for identifying patients with Alz- heimer’s disease. At one extreme there are ‘high throughput’ clinics, and at the other there are ‘low throughput’ clinics which investigate fewer patients in rather greater depth. In order to ensure an ad- equate number of patients with Alzheimer’s disease, clinics operating the latter strategy are presumably more selective in attracting and recruiting demented patients; the fact that these clinics have a high per- centage yield of Alzheimer’s disease and a low pro- portion of non-demented cases suggests that this is the case. Another factor contributing to the differ- ence between high-yield and low-yield clinics in this survey may be the fact that all of the low-yield clinics used the exacting NINCDSADRA criteria whereas only one of the high-yield clinics did so.

What role do memory clinics have in the future development of psychogeriatric, geriatric and neurological services? As antidementia drugs become licenced for clinical use, services will need to be able to identify, assess and manage those individ- uals in the early stages of their dementia who are likely to respond to them. In the absence of simple diagnostic tests to identify who is suffering from which disorder, this will require screening pro- grammes backed up by a range of intensive and sophisticated assessment and follow-up services. While the initial screening at the level of primary care may not be particularly onerous (Wilcock et al., 1994), the same cannot be said for the subsequent specialist evaluation of screen-positive cases that will be required. If memory clinics were to take on the task of assessing screen-positive individuals,

they would need to be considerably expanded to process the large numbers without unacceptable delays, an option that is probably not feasible in view of the cost. An alternative to the present memory clinic system would be assessment of the screen-positive patients by a single health pro- fessional trained in the use of an efficient battery of diagnostic tests. Experienced non-medical health professionals can be as accurate in their diagnoses of dementia and other psychiatric disorders in the elderly as are doctors (Collighan et al., 1993; Sey- mour et al., 1994). However, it remains to be shown that suitably trained non-doctors can efficiently di- agnose the various subtypes of dementia, as would be required by a service that is offering treatments.

Whatever changes occur in clinical practice, there will be a continuing need for a research focus on dementia to evaluate the impact of both existing and new treatments on course and outcome. There is a clear continuing role for a network of memory clin- ics in this respect and they will need to be organized to ensure that they are efficient in attracting and identifying the disorders of interest. The findings of this survey suggest that careful selection of patients into the clinic, and more detailed assessment at the cost of lower throughput, are currently important in ensuring a high proportion of cases of dementia and Alzheimer’s disease.

REFERENCES

Bayer, A., Pathy, J. and Twining, C. (1987) The memory clinic: A new approach to the detection of early de- mentia. Drugs 33 (Suppl.), 84-89.

Brodaty, H. (1990) Low diagnostic yield in a memory disorders clinic. Int. Psychogeriat. 2, 149-1 59.

Collighan, G., Macdonald, A., Herzberg, J., Philpot, M. and Lindesay, J. (1993) An evaluation of the multi- disciplinary approach to psychiatric diagnosis in elderly people. Brit. Med. J . 306, 821-824.

Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975) Mini-Mental State: A practical method for grading the cognitive state of patients for the clinician. J. Psychol. Res. 12, 189-198.

Harrison, M. and Jones, R. W. (1993) Don’t forget memory clinics. Geriatr. Med., March, 3942.

McMurdo, M. E. T., Grant, D. J., Gilchrist, J., Findlay, D., McLennan, J. and Lawrence, B. (1993) The Dundee Memory Clinic: The first 50 patients. Health Bull. 51,

Philpot, M. and Levy, R. (1987) A memory clinic for the early diagnosis of dementia. Int. J. Geriatr. Psychiat. 2, 195-200.

203-207.

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Rai, G. and Phonsathorn, V. (1990) Depression in patients with early dementia of Alzheimer type. Care Elderly 2, 371-372.

Roth, M., Huppert, F. A., Tym, E. and Mountjoy, C. (1988) CAMDEX The Cambridge Examination for Mental Disorders in the Elderly. Cambridge University Press, Cambridge.

Seymour, J., Saunders, P., Wattis, J. P. and Daly, L. (1994) Evaluation of early dementia by a trained nurse. Int. J. Geriatr. Psychiat. 9, 3742.

SPSS/PC+ (1986) Statistical Package for the Social Sci- ences, SPSS, Chicago.

Van der Cammen, T. J. M., Simpson, J. M., Fraser, R. M., Preker, A. S. and Exton-Smith, A. N. (1987) The memory clinic: A new approach to the detection of dementia. Brit. J. Psychiat. 150, 359-364.

Wilcock, G. K., Hope, R. A., Brooks, D. N. et al. (1989) Recommended minimum data to be collected in re- search studies on Alzheimer’s disease. J. Neurol. Neuro- surg. Psychiat. 52,693-700.

Wilcock, G. K., Ashworth, D. L., Langfield, J. A. and Smith, P. M. (1994) Detecting patients with Alzheim- er’s disease suitable for drug treatment: Comparison of three methods of assessment. Brit. J. Gen. Pract. 44, 30-33.

APPENDIX

Memory clinics participating in this survey

England Dr R. Jones, Research Institute for the Care of the Elderly, St Martin’s Hospital, Bath, Avon BA2 5RP. Prof. G. Wilcock, Dept of Care of the Elderly, Frenchay Hospital, Bristol BS16 ILE. Dr J. Hodges, Dept of Neurology, Addenbrooke’s Hospital, Hills Road, Cambridge CB2 2QQ. Prof. C. Katona, Princess Alexandra Hospital, Hamstel Road, Harlow, Essex CM20 1QX. Prof. J. Lindesay, Division of Psychiatry for the Elderly, Leicester General Hospital,

Gwendolen Rd, Leicester LE5 4PW. Dr K. Wilson, University Dept of Psychiatry, Royal Liverpool University Hospital, Liverpool L69 3BX. Dr M. Kopelman, Neuropsychiatry and Memory Disorders Clinic, St Thomas’s Hospital, London SE1 7EH. Prof. R. Levy, Section of Old Age Psychiatry, Institute of Psychiatry, London SE5 8AF. Prof. B. Pitt, Dept of Psychological Medicine, Hammersmith Hospital, Ducane Rd, London W 12 ONN. Dr G. Rai, Whittington Hospital, Archway, London N19 5NF. Dr M. Rossor, National Hospital for Neurology and Neurosurgery, Queen Sq., London WClN 3BG. Dr Dezoysa, East Surrey Hospital, Redhill, Surrey RHl 6RH.

Dr J. Seymour, Alexandra Day Unit, Nether Edge Hospital, Osborne Rd, Sheffield S11 9EL. Dr D. Wilkinson, Thornhill Research Unit, Moorgreen Hospital, Southampton SO3 3JB.

Wales Dr A. Bayer, University Dept of Geriatric Medicine, Cardiff Royal Infirmary (West Wing), Newport Rd, Cardiff CF2 1SZ.

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Prof. J. Pathy, Health Care Research Unit, St Woolos’ Hospital, Newport, Gwent NP9 4SZ.

Scotland Prof. L. Whalley, Dept of Mental Health, University Medical Buildings, Fosterhill, Aberdeen AB9 2ZD. Dr M. McMurdo, Ageing and Health,

Dept of Medicine, Ninewells Hospital and Medical School, Dundee DDl 9SY. Dr A. Stewart, Royal Victoria Memory Clinic, Royal Victoria Hospital, Edinburgh EH4 2DN.

Eire Dr B. Lawlor, MIRA, St James’s Hospital, James’s St, Dublin 8.