Telling GPs the Truth about ME - the next phase
Involving people with ME in our campaign to put the known medical facts about this illness into the hands of GPs and so help dispel some of the prevailing medical myths and fantasies.
February 2014 - April 2014
Many GPs are uninformed about ME/CFS or still dismiss it as a non-existent illness or believe that it is a psychological illness that can be treated using psychological methods, which it is not. This continuing lack of knowledge and these misguided beliefs, and the use of psychological treatments which fail to restore the health of those affected, frequently result in a breakdown of trust between patients and their doctors and leave ME/CFS sufferers feeling very misunderstood.
The first phase was successfully completed in 2013 - with 3,500 copies of our clinical guidance booklet being mailed directly to GP surgeries round the UK. This time we want to involve patients, families and carers directly in the delivery of the guidance to their own doctors so we can get the booklet into many more surgeries.
Empowering people with ME/CFS to take greater control in the management of their illness.
Activities» Posting them our clinical guidance booklet and asking them to hand deliver it to their own doctor or surgery reception desk.
Through hearing from the patients themselves that they have found the energy and,, in many cases, the courage to deliver the booklet directly to their GP or surgery reception desk.
Getting the booklet into many more GP surgeries round the UK.
Activities» Using patients as the delivery channel, where patients are well enough to be involved. This was only partially achieved in the first phase of project.
By using the resource we know best – people with M.E., their families and carers – to deliver the booklet.
Getting doctors to read the booklet and not just bin it.
Activities» Having the booklet presented to them by their own patients will be the key that opens the booklet up to their closer scrutiny.
Discussion with patients about the booklet will focus doctors' mind. Many will want to demonstrate to their patients at the next appointment that they've at least dipped into it.
We expect this campaign to help reduce the psychologisation of this illness. The process started with phase 1.
Success will be measured by the feedback we receive from patients and the profession in the aftermath of the campaign.
The project will help build up the level of inquiries from doctors themselves – a development that existing systems are well able to handle. It will also widen interest shown in the work of the Association by both its members and other people with the illness.
The main risk is that practice managers and GPs will simply bin our booklet, or let it gather dust on a shelf. Involvement in the campaign by some of their more vocal patients when the booklet is being hand-delivered will reduce this risk.
Use of our quarterly magazine, website and social media – with letters and emails, as appropriate.
Budget - Project Cost: £4,000Loading graph....
Amount Heading Description £1,500 Printing Printing of additional copies £750 Databasing Hire of databasing worker £1,750 Distribution Mailing house services
UK-wide, with patients, families and carers being invited to nominate themselves to deliver the booklet. We expect there will be another 2,000 or more booklets available for free distribution. The project will be managed by existing staff.
– GPs, who will have access to clinical guidance written by two of the most experienced ME/CFS medical practitioners in the UK – Dr Charles Shepherd, medical adviser to the ME Association, and Dr Abhijit Chaudhuri, consultant neurologist at the Essex Neurosciences Centre. The booklet has already been used by the NHS as a source for the 'Scottish Good Practice Statement on ME/CFS'.
–Their patients, who will feel more confident their real medical needs are being addressed when they see their GPs
The ME Association, the country’s longest-established ME/CFS charity, is the only national M. E. Charity in the UK that had medical expertise and advice on tap almost every day of the year. We have systems in place that will enable us to handle the extra volume of work incurred by this project. We are already widely respected for our consistency in promoting the biomedical model of M. E. when funding research into the physical nature of the illness.
Read more about the Charity running this project.
Tony, our publicity manager, is an ex-journalist with over 20 years experience in the charity sector. He will be project manager.
Elaine, our fundraiser, will handle incoming inquiries during the Christmas Challenge donations phase in December.