In August 2015 we wrote to over 500 CCG’s and GP’s and sent them the ‘Fibromyalgia is Real’ booklet’. We asked the CCG’s if they could encourage their GP’s to request the booklet to be used as a discussion tool among colleagues to assist in becoming more knowledgeable regarding this chronic condition.
We asked the GP’s if they could discuss the subject with their colleagues and leave information in their waiting rooms.
We e-mailed over 200 mayors asking them to help raise awareness by joining the worldwide 'Light up the Night' events on May 12th by lighting council and local landmark buildings in purple/blue/green to show support of Fibromyalgia, Myalgic Encephalomyelitis and Chronic Fatigue. This year we are delighted to have 12 confirmed such events taking place. Later in the year we will be contacting all the deputy mayors ready for the awareness day in May 2017 to see if they can help us by lighting more buildings up.
In May 2015 we held our first balloon release at an event at Enfield Cricket Club, Accrington. Following this success we held our 2nd annual balloon release at the Country Kickback event again at Enfield Cricket Club, Accrington on Sunday 22nd May 2016.
Individual members of the group have also been delivering the ‘Fibromyalgia is Real’ booklet to chemists, dentists, libraries etc in their local area.
We have many challenges ahead and we need more members who are willing to join and help as much as able ( new ideas, help with research, compiling spreadsheets, writing letters etc) to ensure we receive the understanding and treatments we need to help us achieve a better quality of life.
The awareness group was started in July 2015. We work throughout the year as a separate group from the magazine and support groups. At present we have 86 members. If you would like to be more proactive in raising awareness then come and take a look at all we are doing on our Facebook page: https://www.facebook.com/groups/ffawareness/
Our group is currently led by a team of just 2 but we are looking to increase that with a further 4-6 team leaders working with small groups to plan and work towards raising the profile of these chronic conditions and their impact on daily lives not only for patients but their families and friendships. It is important that more awareness is given to fibromyalgia. Very few people had heard of fibromyalgia prior to being diagnosed. In the waiting rooms of GP’s and Rheumatology clinics there is no information either on notice boards or on tables.
Some examples of what we have done so far in 2015/16
In August we wrote to MP’s following a debate in Parliament on Wednesday 1st July 2015 led by Alok Sharma who raised the issue of fibromyalgia and the future treatment and protocols for patients.
In March 2016 we wrote again asking for help and support to help us fight for better treatment across the UK and for parity with other chronic conditions and to have specialist clinics put in place. Having discovered what some of our European counterparts have committed to in helping those with chronic conditions we are determined we, in the UK, deserve no less … better treatments and acceptance instead of derision and acknowledgement of the WHO’s classification of these diseases, as well as more funding for research. One example of the support and systems put in place is the Tarragona Initiative which can be found via this link –
Hopefully, later in the year we will be writing to arrange to meet up with the MP’s who have been happy to help us. This will enable us to get a voice in Parliament.