MAY 12 – WORLDWIDE FMS AWARENESS DAY

by Jeanne Hambleton Copyright 2009

 May this 12 May blossom into a wonderful year

Somehow I just could not let today pass without making some effort to celebrate International  Fibromyalgia Awareness Day together with others who suffer chronic pain and long term illnesses.

We constantly strive to raise awareness about this chronic condition  but my thanks must go to Tom Hennessy who lives in the States and is now bedridden, for  launching this annual event. Hopefully around the country in the UK and possibly worldwide people with fibromyalgia will be doing their darnest to bring the invisible disability to the attention of the public.  Fibromyalgia has been described as more common that rheumatoid arthritis and often more painful.

While in the States, who proclaim a worldwide epidemic of FMS  is upon us,  there are something like 6 to 7 million folk suffering with fibromyalgia – here in the UK it is said 2.7 million people have  this condition. Has the epidemic started here at home  I wonder? Considering the vast different in the population  our number is very high –  I am told one in 50 people. 

Regardless of this high number let me reassure those who  are feeling down and full of despair, that there is light at the end of the tunnel. A huge army of volunteers are fighting daily battles to raise awareness, shame our government into giving  us funds for research to find a cure and the cause and FMA UK  are spreading the word on a regular basis. 

We are trying hard to move mountains – maybe with a bit more help we might be moving them a bit quicker. 

But we should remember this  May 12 as being a few days after the first ever  historic debate about fibromyalgia  in the House of Commons. There were some fine words spoken by  a few MPs who made the effort  to  be in the House at 9.30am to  back Rob Wilson MP (chairman of the All Party Parliamentary Group for Fibromyalgia) who  had secured a debate to consider support for the people who have fibromyalgia.

Rob Wilson’s opening speech was very detailed and covered many issues relating to  this rotten condition. Anne Milton MP, Shadow Minister, Health, and Norman Lamb MP, a member of the APPG for FMS,  provided great support for the call for to help those with fibromyalgia. They had done their homework and certainly knew quite a bit about our condition. 

In spite of the magnificent  backing from a small group of MPs, the Minister, Ann Keen,Parliamentary Under-Secretary (Health Services), Department of Health, gave no firm assurances that she could give her full support the plea for help. She did however point out where information on FMS was available on NHS websites although it was reported earlier that NICE has declined to consider providing guidelines on fibromyalgia finally after almost two years wait. This is the time it took for NICE to reply to a request from FMA UK. 

Although Ann Keen described herself as a  health professional (a former  community nurse) it appeared her hands were tied. On a positive note she did suggest, “Everyone of us wants the best for those suffering from that chronic, distressing, uncomfortable and painful condition,” but she made no commitments. She stated  the debate could be the start of important dialogue with the two  APPGs for FMS and Chronic Pain.

Hansard reported the Minister suggested that  ”…setting NHS must-dos is not easy…The Department of Health must be sparing in setting those priorities centrally because of the criticism that we often receive when we attempt to do so. I know that everyone in this Chamber is here in good heart, but it is important to put it on the record that if we were to keep giving the NHS priorities, my list, let alone those of the rest of the ministerial team, would be long.”

To read a comprehensive report of the debate  log on  http://fmsglobalnews.wordpress.com/2009/05/09/mps-call-for-fibromyalgia-education-for-doctors-in-first-ever-fms-debate-in-uk-parliament/

and listen to the debate (75 minutes approx.)  log on to

http://www.fibromyalgia-associationuk.org/content/view/385/1/

You may already know that in March the Chief Medical Officer of the Department of Health, Sir Liam Donaldson, in his annual report for 2008 highlighted the problems surrounding chronic pain. 

 He pointed out, “Every single day, millions of lives are ruined by long term pain. Chronic pain is common and is getting commoner. People of all ages are affected, from children to older people. Pain left untreated can eventually become untreatable.”

He added,”Chronic pain is devastating for sufferers and their families. Children with pain do worse at school. They have more mental health problems. Half the adults with chronic pain struggle to walk, drive or even sleep. A quarter will lose their jobs. Quite simply, pain ruins lives.  The costs to our economy are enormous. Over half a billion pounds is spent annually by the NHS on pain medication alone.

 ”Pain is too big a problem to ignore. Yet it seems we have not been paying it enough attention. Patients say they are rarely asked about their pain by doctors or nurses. When they are asked, the treatment they receive is often inadequate. Many patients with pain are not getting any medical help whatsoever. Modern pain treatment can allow people with chronic pain to get their lives back. Medication is an important part of this. Other treatments such as electrical stimulation, acupuncture and psychological methods can be important as well. Patients can learn from professionals, and from other patients, how to recover. These services and more should come together in a modern multi-professional pain service. This has been shown to make a big difference to patients’ lives.

“Unfortunately, services are variable around the country – both in primary and hospital care. Only 14% of sufferers have seen a pain specialist. In fact, there is only one full-time pain specialist for every 32, 000 people with pain. Improving the quality and availability of services would benefit the lives of millions of people. In this chapter, I recommend changes to the way we deliver pain services in this country. We must start to routinely ask patients about their pain, record the information, and use it to improve services further.

 ”Wherever pain services have already been reformed, it has made life better for thousands of people. Change on a national scale can make life better for millions.”

I recently heard that   Ann Begg MP,  the lady who fought so valiantly in the House, but sadly unsuccessfully,  to stop  the co-proxamol withdrawal is the chairman of the All Party Parliamentary Group for Chronic Pain. I wish her much success.  Let us hope  this APPG might be influential in changing  the listing of co-proxamol to a controlled drug like morphine. Then  GPs could  prescribe  this wonder pain killer that so many of us have relied upon for pain relief,  to named patients without fear of litigation. Let us hope  that talks between the two Groups  might prove beneficial to  all of those who suffer chronic pain including the fibromites. 

Perhaps I should remind you  of the words of Pam Stewart, chairman of the trustees of FMA UK and vice president of the European Networks of Fibromyalgia Association, “We have a fight on our hands.”  So yes there is still work to be done. Keep up the pressure on your MP. The MP is vunerable  right now and should be listening to your requests for support as he will thinking it could win him votes.  Press your MP for funding for research and maybe  May 12 as Fibromyalgia Awareness Flag Day. 

Do remember  when  writing to your MP or sending a reader’s letter to your local newspaper, that  Fibromyalgia IS REAL, it is not a murky illness.  It does relate to our quality of life and it is a huge financial burden on the family. There are 2.7 million people  with FMS in the UK, mainly women and stress is a primary trigger.   With a worldwide epidemic looming, this number could increase dramatically. Action is needed now- not when it is too late.  Take care and think positively – we must have hope. Jeanne

 

Sources include Hansard and theyworkforyou.com