The Nottingham & East Midlands Fibromyalgia Support Group.

AWARENESS 2005.

The chances are that if you are reading this programme you have joined us for the Nottingham Awareness, may I take this opportunity to thank you for giving of your time and welcome you to our group and hope that throughout the afternoon you realise how determined and dedicated we are to supporting all who have fibromyalgia and their carers.

The Nottingham group are presenting their third “Awareness”, the first one in 2003 was a success, even though things went horribly wrong when our sound system failed and I was reduced to keep shouting from the back of the hall “we cant hear you!!” I am quite certain that the Consultant that was speaking could have quite happily shouted back at me, never the less it was apparent from our first awareness that the need for raising awareness of this invisible condition was crucial and had to be followed through. We had not realised the thirst for information about fibromyalgia and had underestimated the lack of support for those diagnosed, from this point forward the group have endeavoured to bring about change.

Our Awareness grew further in 2004 and we invited more professionals than the previous year, the response was superb. Many MP’s, Dignitaries, Professionals and organisations attended and came to show support and hear about the associated difficulties of fibromyalgia. Our contact with MP’s became more frequent with many of our local MP’s offering to help the cause. The Fibromyalgia All Party Parliamentary Group (FAPPG) has been of prime importance in helping further fibromyalgia interest, to, which again, the Nottingham MP’s have played a huge part and our group would like to take this opportunity to say, thank you to all of you.

In May of this year we took the plunge and attended the Birmingham NEC two day Professional Medical Conference by invitation from the Birmingham Primary Care Trust, the first time that Fibromyalgia has had representation at such an event. This conference was an immense success with all areas of the NHS wanting information about fibromyalgia, over 900 enquiries over the two days. We have already booked for next year and are in the process of approaching our own professionals to produce information to hand out. The NEC 2006 is only one of planned Awareness raising events by the Nottingham group for the coming year.

                                                                                                           Dispelling the Myths.

What are the myths? Well how about “it is all in your mind” or “it doesn’t exist” or “you have to pull yourself together” or  “you are depressed” or “only women get fibromyalgia and around the age of 50” to name a few. I am pretty sure the men that I know who have fibromyalgia have some thing to say about that statement! There is overwhelming medical evidence to support the fact that fibromyalgia is a valid physically debilitating and very real condition, informed medical professionals are in no doubt as to this but still we have to deal with those who are uninformed and seem to be content to carry on in their failing to find out the facts. Those of us who have been diagnosed with fibromyalgia and have taken steps to research our condition and find out the facts are 100% certain of their condition and are in no doubt as to what is wrong with them, what fibromyalgia is and how it affects us, this does not make us medical professionals it certainly doesn’t mean that we know it all, it simply means that we have done our home work, what we need is for professionals who have us fibromites as their patients, to do the same. Of course we recognise the difficulty that we as patients present, what other condition has so many subsets within it?  We all have varying degrees of pain, fatigue and sleep problems and then to add to the confusion we have an array of different symptoms within the syndrome, it is enough to send anyone running for cover or cause some to scratch their heads, but as patients we place a fair degree of trust in our medical professionals, I for one would like to be reassured that this trust has foundation, they need to be knowledgeable about what they are treating, they need to put their feet in our shoes, perhaps think more like a patient? Awareness of our condition is some thing that we are all capable of delivering, we don’t have to be medically trained, rocket scientists or brain surgeons, just a willingness, and more than likely a great deal of patience, to make our family, friends, work colleagues and professionals aware of this invisible syndrome, we simply need to know about our own condition. It is our group aim to change the perception of fibromyalgia by presenting the facts.

As patients we would like to be able to sit in front of our medical care team and not have to explain to them about fibromyalgia, one sentence does not portray this syndrome, it requires the professionals who care for us to be informed, how do we do this? We raise Awareness, we send out information to every hospital department, to professionals, we become informed ourselves and we pass on the facts, we use media saturation to help us and we don’t accept half heartedness, our health is everything, we need to be control!!

This year we are privileged to have two superb speakers and a presentation by the Expert Patient Programme, this course has recently finished being trialled and is now main stream within the NHS. As there are few medications or treatments that specifically aid fibromyalgia it is important that we self manage as much as possible, this course is designed to help those living with a long term condition to achieve this.

I would like to thank our guest speakers, Dr.S.Z. Hussain, Consultant, Mr. Graham Broughton, Osteopath and to the Expert Patient Course presenters, without their involvement and interest this event would not be the success that it is.

I hope that you find the speakers exceptional and that this years Awareness is informative and interesting, our group hope that you have a thoroughly enjoyable afternoon and that the buffet is superb and the hospitality of our group is second to none, who says that learning has to be boring!

Thank you,

Christine Brown, Awareness Co-ordinator for the Nottingham Group