BIRMINGHAM NEC MAY 2007

Michael, Florrie and I travelled down to the NEC on May 9^th to set up our fibromyalgia stand for our fourth NEC convention. This was the largest stand that we have paid for with our stands slowly progressing in size as demand has dictated.

As usual we were on our stand at 8-30am and raring to go, engaging with the professionals has been a remarkable opportunity and experience that has grown year by year, respect and admiration for our professionals in their specific field in which they work and their remarkable honesty about the issues surrounding our condition has also grown year by year.

Our colleagues from the Burton-on-Trent group, Jan and Judith, joined us on Thursday, for which we would like to offer our sincere thanks to them, giving us a break and offering them the opportunity to experience the NEC for themselves and we would like to thank them for their kind offer of future support. Jan and Judith had many engaging conversations with the medical professionals including professionals from their locality.

Over 5,000 medical professionals attended the two day convention with more GP’s than we had seen at previous events, this is due to the ever growing number of specific conferences attached to this event.

Feed back, as ever, was engaging and interesting with many of the professionals saying that they are never given any information about fibromyalgia and certainly no opportunity of any training. GP feedback was that they feel reluctant to diagnose fibromyalgia for a couple of reasons:

Ø      We have conflicting accounts of what fibromyalgia is, physically debilitating or psychosomatic?

Ø      We feel that until evidence of fibromyalgia is presented to us that is indisputable as to what fibromyalgia is we prefer to refer to the Consultants for diagnosis.

This is the sad state of affairs that fibromyalgia patients will continue to encounter until we work together to get our information out there literally swamping the relevant departments and professionals. It is fair to say that even providing them with information we have no way of knowing if they read the information or if it even reaches their desks but by being where we know they  are, at such events as the NEC, they come to us, which is great, and they come  specifically for the purpose of obtaining fibromyalgia information. Feed back from  the professionals was:

Ø      How can we help the patient if we don’t know about the condition, we can only work from the information provided from referral.

Ø      “why is it expected of us that we can help fibromyalgia patients when we have no information and no training, we are as frustrated as the patient”.

Ø      We have a couple of hours training on fibromyalgia (trainee GP’s)  

The above feed back provides us with issues that require addressing including the training issue, yes it is good that they are receiving training about fibromyalgia, but two hours and what information are they being told about fibromyalgia? It would be great if any training days for health care professionals included patient participation so that the professionals obtain a clear picture of the whole syndrome and not just focus on the pain, sleep and fatigue part. 

 At the end of the first day there is always a drinks reception invitation for those who organize and book the stand for the event and a colleague (this is the part that I thoroughly enjoy, Florrie and I were off like lightening leaving poor old Michael to man the stand!) this is initially for feed back to the organizers and a useful opportunity to network if you haven’t had the time to go around the hall during the day. We had a guest visit to our stand from the exhibitor for the Bath Pain Management Unit stand and we exchanged information and were told the stand was great and what a surprise to see fibromyalgia being represented, this is a good opportunity to network with other long term condition exhibitors although we noticed there was only one further long term condition being represented this year where as in previous years there has been quite a few, at the NEC Nursing In Practice November 2006 there were 5 national organizations representing their cause.    

Friday we were by our selves and had an horrendous day, it was non stop from 9am to closing, professional after professional (it is encouraging when they see our stand number and group logo advertisement in the NEC brochure and they come and seek our stand out) with sometimes a group of professionals standing listening to the issues surrounding fibromyalgia and what we can do about it. We had a Power Point Presentation on the stand continuously running throughout both days, this attracted much interest from those sitting at the main café for refreshments and meals directly opposite to where our stand was sited. 

Once again those who had been to our stand the two previous years stopped to say hello and ask us how we are, many more professionals said that it was great that we were there, with comments such as, we have never ever seen anything or anyone relating to fibromyalgia at an event before, a couple of GP’s shook my hand and congratulated me, said it was great!

One wonderful comment since being at the NEC was related to us by a patient who had been to see a Consultant at the City Hospital and the Consultant had been at the NEC, he had recommended that she come to us as we could probably help her much more than he could, he had told her he was very impressed with our stand, information and hospitality, great feedback.

Again, quite a few professionals told us that they had fibromyalgia and hadn’t had any support from their employers or information upon diagnosis, they were simply struggling to stay in their jobs.      

Being in the position of experiencing the NEC’s at first hand has been enlightening and constructive, we have been able to gain feedback from the professionals that enables us to know the direction in which fibromyalgia awareness needs to be directed, we feel there is much to be done.

I produce an information sheet for the groups and help lines in the Midlands region and many were handed out and I also dealt with enquiries for groups around the UK as a Regional Co-ordinator, from being there many of the professionals are now aware that there is a fibromyalgia support structure of groups and help lines around the UK.

I would like to thank Florrie and Michael for their hard work and support for these events, funding forth coming, we will be hoping to attend two further event invitations for 2008. We were extremely tired at the end of the three days but feel absolutely positive and determined that this is the way to proceed if we are to make a difference for all fibromyalgia sufferers.

As always I will write to our MP’s and share with them the feedback from the NEC.

Christine, Chair of the group and Awareness Co-ordinator. June 2007