9 October 2015
 
Dr Alastair Miller stands down
Prof Julia Newton and Dr Gregor Purdie have been appointed to the shared role of AfME’s Medical Adviser

Action for ME website - Action for M.E. appoints new joint medical adviser
www.actionforme.org.uk/NR/exeres/C2FE317C-2D5E-4D80-BBF6-A4858CE365CC
9 October 2015
Action for M.E. is delighted to announce that Prof Julia Newton and Dr Gregor Purdie have been appointed to the shared role of our Medical Adviser.
Prof Newton and Dr Purdie have taken over from Dr Alastair Miller, who has been Action for M.E.’s Medical Adviser since 2010.
Prof Newton, Clinical Professor of Ageing and Medicine and Dean of Clinical Medicine at Newcastle University, has published a considerable body of research relating to M.E. and other chronic diseases associated with fatigue.
Dr Purdie, who has been working with people affected by M.E. since he was a junior doctor in 1979, was Clinical Lead for M.E. for NHS Dumfries and Galloway until he retired last year, and is already a Trustee of Action for M.E.
Both have been working closely with Action for M.E. for a number of years, contributing to the charity’s ongoing programme of UK-wide events and resources for patients and professionals.
Prof Newton’s 2013-2015 study into muscle dysfunction and M.E. was funded by Action for M.E., while Dr Purdie worked with the charity on a series of educational webinars for GPs who, according to UK-wide research (2013, Aviva Health of the Nation Index) find M.E. one of the most challenging conditions to diagnose and refer.
Sonya Chowdhury, CEO, Action for M.E., says, “Bringing together considerable research experience and significant clinical expertise, Prof Newton and Dr Purdie are something of a dream team for us. I know their extensive knowledge, shared with Action for M.E. staff and Trustees, and in turn with those whom we support, will help improve the lives of those affected by this terrible condition.”
Alan Cook, Chair of Board of Trustees at Action for M.E., said: “We are enormously grateful to Dr Miller for the time, expertise and support he has freely gave to Action for M.E."
 
Dr Miller was the lead Clinician for the Herefordshire & Worcestershire CFS/ME Service, until he moved to Liverpool in 2005.  His position was - Consultant Physician in Infectious Disease and General Internal Medicine–Worcestershire Acute Hospitals NHS Trust.

13 October 2015
 
NHS Services for Neurological Conditions (excluding M.E./CFS) - Report from Meeting
 
On Tuesday, 15 September, patients, carers and professionals were asked for their views. 
Worcestershire’s three Clinical Commissioning Groups (CCG) have asked support agency NHiS Commissioning Excellence [NHiS is a Wilmington Plc Company] to review neurological services and determine whether they are meeting patients’ needs.

Caroline has since reported to the Group. 

Jill and I went along to the meeting in Droitwich last month and (see below) we were both glad that we did, as we were able to make some useful contributions and raise awareness.

The attendees were split into groups according to their neurological condition, e.g. Motor Neurone Disease, Parkinsons, ME, epilepsy, etc. each with their own table and materials with which to discuss the "pathway" of their condition, from diagnosis through treatment to support etc.   They had an illustration of the basic care pathway and were given post-it notes on which to write improvements they would like to see in their service, what changes would be helpful, etc.

There was no such group for ME, so Jill and I asked if we could make our own, as we felt this would be the most effective way of getting across the difficulties ME/CFS patients face and the deficiencies in the service.  The organisers were very accommodating and extremely helpful.  One, Simon, sat with us for some time and clearly learnt a lot while we explained the care pathway to him, as we understand it.  He knew very little about either the condition or the service and was clearly surprised at what he heard from us.
Having drawn and explained the pathway we then set about the post-it notes.  Our points included:
    1.  Better GP training and understanding needed, so they understand it is a serious, long-term condition and that it is a neurological not psychological condition;
    2.  Occupational Therapist should be available at first appointment with the ME/CFS Consultant to aid with information and suitable treatment decisions;
    3.  Joined-up services - better communication between GP and specialist when the ME patient is referred to a specialist consultant for a condition, so the "whole person" is treated, not each condition in isolation.
  In particular in relation to the above, there is a need for understanding and recognition by all who see and treat the patient that ME is a neurological condition that affects many of the body's systems, e.g. digestive system, nervous system etc. and including the immune system;
    4.  Remove the concept of "discharging" the ME patient at the end of the "course" of "therapy" meetings.  Patients are left feeling alone and unsupported, plus this can affect patients' work and/or benefit situations;
    5.  There should be a professional available for on-going care and who can be contacted in times of difficulty, crashes, etc.  (Simon was surprised that so much that was offered to patients was delivered through group situations, rather than on an individual basis and appreciated the limitations of this system and the problems this causes);
    6.  The Management Lifestyles Group programme, (MLG) one-to-one sessions with an Occupational Therapist or Psychologist and RAD (Recovery After Discharge) meetings, should be offered in more locations, so patients don't have to travel so far;
    7.  RAD groups should be available to all Worcestershire people with ME/CFS, not just those who have recently attended the MLG programme recently.
At the end of the meeting each group, including ours, gave a verbal feedback to the rest of the attendees, so we were well positioned to make our presence felt.  It was interesting to hear that some of our points overlapped.

Overall, we felt it was a positive experience, although, as always, we are sceptical as to how much can be achieved, given the funding difficulties, but at least we were able to make our mark.  Jill and I were very aware that between us there was a limit to how many comments we could make and are sure that there is a lot more that needs to be said, particularly for people with severe ME who are not able to attend appointments/meetings.
At the September meeting we were just discussing the care pathways and we were just adding comments to that.  We have since written to Simon, giving him links to information on our website, including patients' experiences within our group newsletter and reports: http://worcsmegroup.weebly.com/about-me.html#6aWorcs-CFS-ME-LMDT

We have been assured that incorporated into their planned rolling programme of meetings, there will be one dedicated to ME/CFS sufferers, so watch this space.  They have promised to let us know when and where it will be held and we will pass on this information when we have it.
It would be really helpful if more patients with ME, and/or their relatives, carers could attend, so that we can broaden the range of feedback we provide and better influence the decisions taken about the future of the service.