Update on Work of the NHS Leeds Fatigue Clinic.

By Richard Hawkins, as reported in the Kirklees M.E. Group newsletter October 2001

Although I have had no personal experience of the Chronic Fatigue Clinic' in Leeds I have heard mixed reports from fellow ME sufferers. I therefore grasped the opportunity afforded by the Leeds & District M.E. Group to go to one of their meetings for a talk by two Occupational Therapists from the NHS Leeds Fatigue Service about their work with ME/CFS.

The talk was led by Miranda Thew who, with four years experience in the Service, had recently been appointed to the new position of Clinical Leader. She told us that the Service takes patients from a wide area, with 50 % outside the Leeds postal area from as far afield as Huddersfield, Hull, Teeside, the Midlands and even Cornwall. This success has however, led to a 'massive waiting list'. The current waiting list has 150 patients who have to wait typically 58 to 60 weeks to see the Consultant Dr. Stanley who, if he confirms the diagnosis, places patients on a further waiting list of up to 26 weeks before they start receiving therapy.

The Service has successfully campaigned to obtain more money to develop their service in the aim of reducing the waiting list and improving what they can offer patients. All referrals, which must come from the patient's GP, are now assessed by the new 0.T. Triage who only refer patients to Dr. Stanley or the Psychiatrist if deemed necessary or specifically requested by their GP. Otherwise, patients go direct (after a short wait) to therapy.

Most patients take the 'Group' therapy option which consists of eight weekly hour sessions for up to 8 people. It consists of an introduction and discussion of ME symptoms, the analysis and measuring of activity, diet, quality sleep and meaningful exercise, stress reduction and relaxation, dealing with emotions, combating loss of memory and concentration, relationships and reacting to other peoples' perception of the sufferer's condition. This is usually followed by a follow up group session after three months and the option of up to two' top-up, sessions per year.

As an alternative to Group therapy, patients may have individual therapy tailor made to their own specific needs, or less severe cases may have short-term ' one-off advice '. The Service also provides an in-patient service for severely debilitated sufferers in the Leeds General Infirmary and St. James Hospital with the option of home visits after release.

In addition to occupational therapists, the Service also has specialist options including a physiotherapist to provide education on posture, pain management and muscle development, a CBT (cognitive behaviour) therapist and a social worker to provide help with benefits and employment situation.

The Service aims to improve the quality of life for ME sufferers largely by steering patients to a balance between over-activity and non-activity . Whilst Miranda demonstrated that she and her colleagues clearly understand the condition and what sufferers are going through, I nevertheless felt that they may be pushing some patients too quickly into activity. However, having waited up to 1 years from GP referral to receiving therapy, perhaps their patients have already by default had the all-important rest during the early stages of the illness. By reducing the waiting time to a few months I cannot help wondering whether this may put a different perspective on their therapy program.

Miranda openly admitted that there is an unacceptable confusion, especially amongst GPs, between 'graded exercise' and 'graded activity'. This led onto the inevitable debate about GP's ignorance of the condition in which she urged patients to take up the fight to educate their doctors, both about the condition and the facilities available at the Leeds Fatigue Service.

As from October 2001, the Service will be operating out of a new specially converted ward at Seacroft Hospital offering a more congenial environment, ramp access and easier car parking.

The Service is hoping to develop even further with a dietician and flexibility for patients, e.g. appointment times. They also hope to carry out research into the condition from their past patient database. Their initial aim however, is to reduce that massive waiting list.