Edmesh Open Meeting 28Thmarch 2012 by Keith Anderson

edmesh Newsletter Issue 80 (Summer 2012)

The Nurse-led ME/CFS Service in NHS Fife

edmesh Open Meeting 28thMarch 2012 by Keith Anderson

edmesh members were pleased to welcome Keith back to give an update on his work in Fife.

What does Keith do?

The post was set up in 2004 to provide a nursing service for ME patients in Fife. Keith has now been in the job for seven years, has seen about 700 people with ME and made contact with over 200 GPs. He aims to explain that ME is a 'real disease' and helps people to manage the condition.

Making a Start

After initial contact with a patient, Keith makes a written summery of the consultation and sets up an individual management plan. He devises appropriate therapies based on energy conservation, activity management, relaxation techniques, sleep regulation, pain relief, lifting depression and anger, and goal setting. He uses some aspects of CBT in some cases. These therapies may be given individually or in groups, at home or in a specialist clinic.

The Stages of ME

Keith finds that MF has three stages:

Flrst stage: onset. This often follows an acute stress, physical, mental or emotional, e.g. an

Infection, bereavement, job loss or house move, though stress alone isn't a cause of ME.

Second stage: implementing a recovery plan and establishing a routine, with family support.
Third stage: an equilibrium where improvement has taken place in a greater or lesser extent though relapses followed by recovery are possible.

Liaison with other Organisations

Keith has links with the Social Work Department for the provision of useful equipment, respite care, home help, personal care etc. He can refer patients to home and community education services and to

disability advisers at university or college.

He also has contacts with the Department of Work and Pensions regarding benefits, welfare rights,jobcentres, occupational health, etc, and, importantly too, with paediatric and family support units,

which has led to the development of a care pathway for children and young adults in Fife

Keith provides information about local and national self-help groups such as Action for M.E., distributing their handbooks and advice material as well as offering information for carers, and about biomedical discoveries, e.g. by ME Research UK.

Keith asked audience members to write down questions and hand them to him — the following points emerged from the combined wisdom of Keith's experience and the "expert patients" in

the hall.

Diagnosis

Patients have often had their diagnosis made by more than one hospital consultant. Many doctors do their best, said Keith, and younger doctors are often more knowledgeable than older ones.He praised the guidance given in the Scottish Good Practice Statement for GPs on identifying ME. Specialists, however, are equipped to undertake the sometimes lengthy process of eliminating other medical conditions, which may affect up to 40% of people who present at GP clinics with ME-type symptoms. Keith explained that the average length of time between falling ill and being correctly diagnosed is 18

months to 2 years.

Those with an ME diagnosis tend to have been seen more than ten years ago, with Post-ViralFatigue becoming the commoner term used nowadays. Chronic Fatigue Syndrome is the name given when

there has been a gradual onset of symptoms.

Awareness of ME/PVS/CFS continues to grow: Keith himself takes medical students from St Andrews University round with him to show them what he does. If asked to do so, he can usually identify who has and does not have ME in an hour.

Causative Factors

Influences mentioned included sport and intensive training putting a strain on the immune system, as can the long-term use of antibiotics, and of the contraceptive pill.

Research

Keith explained that information on research was available from ME Research UK and from Google Alerts on ME/PVS/CFS. He mentioned that currently work is going on at Dundee University by Dr. Faisel Khan and Professor Jill Belch on the effects of vitamin D, which is easy to measure and to use, on cardiovascular disease risks such as reduced heart rate, blood pressure regulation problems and arterial stiffness in patients with ME/CFS. The team have also recently been analysing blood changes suggesting possible chronic inflammation in adults and children with ME.

Alternative Therapies

Keith feels that some complementary therapies can be very useful in ME, as a number of patients may be sensitive to light, noise etc., and these gentler approaches can ease symptoms successfully. Mindfulness meditation was mentioned as aiding relaxation and sleep. Keith said he had been an observer for The Lightning Process, but that though it could reduce pain, for example, it could not be relied on to cure ME. In addition, as the trainers do not permit clinical trials, it could not be offered on the NHS.

What has been achieved so far

Keith's work could provide an excellent model for any local authority wishing to set up a similar service. He is still the only ME nurse in Scotland, working and travelling around Fife on his own, all the time making and maintaining many professional contacts, and being an accomplished practitioner of networking! He has shown how access to various services needed by ME patients can be smoothly co-ordinated and centralised, saving them and their carers a huge amount of groping around for basic information, and of experiencing confusion and rebuffs. Keith also acts as a source of information for Scotland generally on ME, having given dozens of presentations in the last seven years, at workshops and awareness days, and attending meetings of the Cross Party Group at the Scottish Parliament

whenever possible.

I had a vision of him as a reincarnation of King Alexander III of Scotland, whose capital was at Dunfermline, riding back and forth on his horse (watch out at Kinghorn, Keith!) keeping an informed eye on his "Kingdom of Fife'. Or maybe of The Gudeman of Ballendreich, as King James IV was known when wandering around incognito among his people to find out what was really going on!

For further information: Keith Anderson, Ladybank Clinic, Commercial Road, LADYBANK, Fife,

KY15 7JS. Tel: 01337 832 123. Email:

MERUK

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Valerie Brotherton