NURSES IN CARE NEC BIRMINGHAM NOVEMBER 2006

In June of 2006 I received a telephone call from the company who organize this major conference for Nurses In Care inviting us to raise awareness of fibromyalgia giving us the opportunity to hand out fibromyalgia information to 1,200 Nurses.

I put this invitation to the committee at the first available committee meeting and the committee voted to accept the invitation, there were some reservations as most of us were tired from previous awareness raising events but we feel very strongly about engaging with professionals and putting fibromyalgia information directly into their hands. These conferences require months of planning and preparing the information that we hand out and weeks of organization making certain that all the deadlines are met, we have to comply with Risk Assessment procedure and strict compliances are in place and have to be agreed, non compliance may be result in fines being levied! It is not just a matter of turning up on the day, Build Up Time Construction passes have to be issued for each person building/organizing the stand and we have to work within the time slot that we applied for, car park passes have to be issued and security passes for each person who will be attending the stand, all stands have to be ready the day before the conference and are checked by management, equally there are penalty clauses in place if you begin dismantling your stand before the permitted time, any security passes applied for after the deadline are not permitted, this means that we need to know who will be attending the stand months before the event takes place.

I immediately set about applying for grants to fund the event and Michael and Florrie began compiling and printing the information packs that were to go to the conference, boxes and boxes of info along with our resource and information stands and our fibromyalgia banners.

Michael, Florrie and I arrived the day before to set up our stand in readiness for the early start to the next day.

We have always said that professionals are not really interested in our condition and yet these events show time and time again that this really is not the case, all of them want to talk to you about our condition, many of them want to tell you about their patients (not by name) and the difficulties that they face in not being able to help them as they would like to, some share with us that they have fibromyalgia and are struggling to remain in their work. The personal contact works incredibly well, we take on board their frustrations with this condition and share with them of our plans/activities to get our information out there and hopefully change the perception of the condition and of the work done by many fibromyalgia groups not only around our region but throughout the UK, they realize that we are normal every day people who have, for various reasons, fallen prey to fibromyalgia, the majority of patients being workaholics and some times perfectionists with most of us believing this to have been our downfall, it is not a cop out condition as some seem to think!    

The three of us were up at the crack of dawn, the day was long and busy and we were shattered by the end of the day, busy handing out fibro information and talking with nursing professionals who were midwives, district nurses, hospital and practice nurses and a few physio’s and OT’. As the event was only one day we had to take our stand down at the end of this very long tiring day and by the time we arrived back at the hotel we were too tired to go down to the restaurant and we ordered room service.

We have already been invited to attend this conference again in November 2007, the committee are considering the invitation, we have also been approached to attend a conference that is for Long Term Conditions only with all areas of the NHS and Care Providers being present, again we are considering the invitation.

We are presently working flat out to be ready for the May 2007 two day medical convention at the Birmingham NEC. 

Our aims and objectives are to engage with the professionals and to be in a position to hand out information that reinforces the fibromyalgia syndrome including all the associated symptoms and to be seen as ordinary people who have had their lives disrupted by this condition and in many cases lost the life they had planned and hoped for but also to show them how positive we have remained and dedicated to raising awareness of fibromyalgia and advancing our cause to have our condition recognized by all medical professionals.

I would like to thank Michael and Florrie for their invaluable input, hard work and continuous full support.

Christine