Services in Glasgow

Development of a Facility for the Diagnosis and Early Management of Adults with Symptoms Suggestive of Chronic Fatigue Syndrome

The current situation in GGNHSB:

(1) The infectious disease clinic at the Brownlee Centre, Gartnavel General Hospital. Dermot Kennedy and colleagues see patients with CFS or possible CFS (generally GGHB residents only) on an informal basis at the end of a routine ID clinic once per week. About 6-8 people attend, two or three of whom are usually new patients. Patients attend the clinic on only one or two occasions. The waiting list for the clinic is about eight months. An OT who was a key therapist at this clinic has left and has not been replaced.

(2) An ME ‘research clinic’ at the Institute of Neurological Sciences, SGH. Dr Chaudhuri who runs this clinic is a University employee on a fixed term contract for five years. There is no service element in his job description. Neurologists do take referrals of patients with fatigue syndromes in order to exclude organic neurological disease. Once such disease is excluded the patient is discharged. About 10 new patients appear to attend this clinic each month (including non-GGHB residents). Dr Chaudhuri, supported by members of the CFS/ME Association, was very keen to develop a CFS service led by a consultant neurologist. However in the light of the evidence available this was not deemed appropriate.

(3) Homoeopathic Hospital. Specialists (mostly GPs trained as Homoeopathic Hospital Consultants) provide outpatient services in Glasgow Homoeopathic Hospital. The approach is whole-person, whole-picture – selecting a sequence of indivualised prescriptions to help general well-being and specific symptoms. A number of patients attending suffer from CFS. There is a very significant waiting list.

Difficulties with the current situation
(1) Dr Dermot Kennedy is reluctantly having to withdraw involvement of the Brownlee Institute with CFS patients because of reduced staff availability and because his colleagues feel that this group of patients does not fall within the remit of the Institute, since CFS is not an infectious disease. Dr Kennedy feels that it would not be appropriate to resist this view, since his colleagues would become faced with the problem again when he comes to retirement.

(2) The Brownlee and SGH ‘clinics’ are almost entirely diagnostic, with no therapeutic element (apart from advice on self-help).

Conclusions of the CFS Working Group

This group comprised Mr David Walker (from Nov 01), Mr David Leese (until Nov 01), Dr Abhijit Chaudhuri (resigned about May 2002), Dr David Reilly, Ms Roana Dickson, Ms Linda Dunn, Dr Dermot Kennedy, Dr George Barlow, Mr John McKnight and Dr John Womersley. It met on a number of occasions over a two year period, the last meeting being in July 2002. The general conclusions of the group were:

(1) That a small team of therapists should be established, providing mainly cognitive behavioural therapy (PCT) and graded exercise, with emphasis on self-help. CBT and graded exercise are, according to a number of reports, the interventions most likely to benefit patients with CFS.

(2) That the team should have a medical lead – mainly to establish credibility and to facilitate working relations with medical colleagues from a range of specialties.

(3) That the medical lead should be a ‘generalist’ (eg general practitioner, rehabilitation consultant or possibly homoeopathic doctor) rather than allied to one particular specialty such as neurology, psychiatry or infectious disease.

As part of the Local Health Plan process in 2001/02, the Board set aside fifty thousand pounds per annum to support the development of a service for people with CFS.

(4) That the principle focus of service be on those people where CFS can be identified early and who are motivated.

Events since July 2002
(1) An unsuccessful attempt was made to appoint a general practitioner, two sessions per week, as the medical lead. The post was externally advertised in local and professional press, but attracted no applications or register of interest.

(2) Negotiations took place with Dr Dermot Kennedy to secure his services as a medical lead, but these also failed – for reasons outlined above.

(3) Attempts were made to secure premises in Glasgow City Disability Resource Centres. Although space could be made available on a sessional basis, no dedicated space could be provided (eg for files, office and other equipment).

Revised proposal
To modify original model to providing primary care (therapy/treatment) under secondary care supervision but retaining medical generic lead.

(1) To extend the duties of one of the three consultants in rehabilitation medicine at Southern General Hospital to include clinical leadership of the CFS therapeutic team (two community sessions are presently underutilised). Rehabilitation Medicine is felt to be an entirely suitable locus for the service.

(2) To establish the CFS therapeutic team within the GGNHSB-wide Community Physical Disability Team (CPDT).

(3) To develop a protocol for use by GPs to advise on diagnosis and referral. Dr Kennedy and Dr Norrie Gaw (GP lead at PCT) to draft these.

The advantages of these proposals would be:

the support available to CFS team members from the other members of the CPDT. This would be particularly advantageous from the point of view of training and filling posts during periods of leave

one consultant in rehabilitation medicine already has the role of clinical lead with the CPDT, and it should be possible for him to assume responsibility for the CFS team without the need for additional sessional work

it should be easier to modify and develop the roles of the members of the CFS team if these members are part of a much larger unit than working in isolation.

Personnel required
2 sessions p.w. consultant in rehabilitation medicine

6 sessions p.w. lead therapist (Head III)

5 sessions p.w. senior 1 OT

2 sessions p.w. medical secretary (Grade 4)

1 session p.w. clinical psychologist

Implementation
The key implications are as follows:-

1.Mr Walker and Dr Womersley to liaise with SGH General Managers and clinicians on revised model.

2.Dr Kennedy to discuss clinical supervision with rehabilitation Consultant.

3.Dr Kennedy and Dr Gaw to develop GP protocol.

4.AHP and A/C posts to be advertised by PCT.

5.Location to be reviewed by PCT (either SGH, DRC or Clutha House).

The aim is that with these steps the service can be established by December 2003.

Evaluation
Evaluation is an essential component of the service – not only to determine what benefits accrue to patients but also to inform the future development of the service. There is no gold-standard or benchmark for a CFS service, and what is proposed now is based on the not-altogether-robust evidence which is available. It is most important that sufficient evidence is obtained from the new service to ensure that it can be modified and developed to achieve greatest possible benefit to patients. Dr Reilly has worked up a proposal for evaluation, which is attached. It describes new qualitative methodologies in addition to more conventional quantitative procedures and these could readily be adapted for evaluating services for people with other chronic diseases.