Spotlight on ME Clinics

We plan to make this a regular feature in forthcoming newsletters in order to highlight and report on the progress of how the clinics are being set up and run in your local area.

If you have a special interest in a clinic in your area and would like to highlight any issues, then please contact the Troon office with articles and experiences.

A brief information sheet (2 x A4) has been produced in order to give some facts and pointers about ME and your rights as a patient, especially in relation to the treatment programmes on offer. To purchase this sheet, send 2x2nd class stamps to the office in Troon.

Kent CFS/ME Clinic Representation - September 2005

Kent representatives of the 25% ME Group continue to meet with area CFS/ME clinic service providers.

Progress has been made in that some suggestions made by the representatives have been taken on board and may be implemented.

The recent diagnostic and referral information circulated to GP’s throughout Kent remains a concern. The criterion used ignores the neurological, cardiac, autonomic, endocrine, and to some extent, the immune and cognitive manifestations that the Canadian Criteria insists should be present to warrant a diagnosis of ME.

The ‘Kent’ standard describes a condition considerably removed from that experienced by the ME (as opposed to Chronic Fatigue) patient. It is therefore disingenuous to label the Kent facilities as a service to treat those with the intrusive and debilitating symptoms of ME, although those who experience psychological distress as a result of the condition may gain assistance. Domiciliary visits do not appear to be a priority and would be very limited delivering only ‘fatigue intervention’.

The CFS/ME clinics being set up nationwide are based on the recommendations of the Government’s 2002 Chief Medical Officer's Report. Nowhere in this report is ME recognised as a physical condition. It also fails to clarify the difference between Chronic Fatigue and Myalgic Encephalomyelitis. Strategies such as graded exercise, CBT and structured pacing are recommended & specialised testing is vetoed.

The crux of the difficulties experienced by ME sufferers regarding proper recognition, understanding, treatment and research into the physical causes of their condition remains with central government. It is they who have set the policies currently being implemented by the national clinics. Despite this, representatives opposing the current setup of the Kent Clinics will continue to liaise with and register the concerns of the ME patient community with the NHS professionals concerned.

The suggestion that a system of patient progress monitoring be put in place is being considered. This will enable observation of those who do not benefit from lifestyle management therapies, those who decline or are made worse by this sort of treatment & those who do not complete rehabilitation. The outcome of such a system is uncertain as the clinics are unlikely to attract those suffering from ME as defined by the Canadian Criteria.

We are pleased that the medical personnel on the committee have been receptive to our input and suggestions and we have been pleased to raise issues to the committee, especially relating to the severely affected

Those who wish to support the efforts of the patient representatives or voice their own concerns are invited to make contact via the 25% Group.

Representing ME North East and our 1200 members, and working with patient representatives around the region, I have made it my business to be actively involved and included in the planning, decision-making and implementation of CFS/ME Clinical Services in our area.

We have one Central Network Coordinating Centre (CNCC) based in Newcastle upon Tyne with Dr Gavin Spickett, Consultant Immunologist as Clinical Champion.

The CNCC supports Four Local Multi-Disciplinary Teams (LMDT’s); North of Tyne, South of Tyne, County Durham and Darlington and North Cumbria. The Tees/Cleveland area was unsuccessful in their bid for funds.

All teams have struggled to get services up and running. It has been a steep learning curve for everyone to shape a new service from scratch. Developing working partnerships with all the team players has proven a big challenge for some. Many managers involved in the Steering Groups knew little or nothing of ME – they certainly do now!!!

It is argued that the huge amount of time and effort involved does not reflect the financial investment, seen by some as minimal. (approx £550k in this region). However we are now finally at the stage where clinics are operating and seeing patients. Continued funding will be invested into the Primary Care Trusts baseline funds (or whatever new grouping/commissioning body emerges from the latest reforms).

I have now met all the therapists so far recruited in three LMDT’s. Arranged visits to our offices to “pick our brains” spoken to therapists at training sessions, and have facilitated meetings with patient groups and therapists to find out first hand what people want and how they can best work together. I am extremely encouraged that we have people in post who really do wish to make a difference to the lives of people with ME, and they want to learn from their experiences directly to get it right. We are working with all the teams to provide them with up to date relevant information for both therapists and patients. We will certainly be utilising the resources provided by other ME charities including the 25% Group.

I have undertaken a service level agreement with our CNCC to give one day a week maternity cover for the Clinical Coordinator (June 2005 to February 2006). This is proving very beneficial for both the CNCC in being able to share ME North East knowledge and expertise, but also enhances our role of representing patient needs and being closely involved in the development, implementation and shaping of services.

Successful monitoring and evaluation of service activity and outcomes is a pre-requisite for sustainability. Positive results and patient satisfaction must be proven to further develop a business case to expand and increase a much needed health service for people with ME. Patients will actively be the voice for change, and we will continue to work with and represent people with ME to enable this to happen.

Kent CFS/ME Clinic Representation - September 2005

Jennifer Elliott