Alok Sharma MP (Reading West) introduced a Westminster Hall debate on fibromyalgia on 1st July 2015 initiated through contact with the Reading fibromyalgia support group.
The debate was attended by only 7 MPs and a junior minister from the Department for Business, Innovation and Skills George Freeman MP. We are pleased that there were representatives from all over the UK. There were 4 members of the public attending, including two representatives from Fibromyalgia Action UK. The relatively low attendance was in part due to the relative lack of notice that was given for the meeting but we hope that a future event will allow us to increase the attendance
However we know from social media activity that there was a good interest from the fibro community across the country with many people watching the debate on Parliament TV live and afterwards as well. The debate lasted 30 minutes, started by the debate organiser, Alok Sharma MP, who gave a 10 minute opening speech.
Katie Matthews has shaven head together with her little son to raise awareness and funds for FMA’s UK work.
Katie told us: ‘’If you have or know someone with fibromyalgia you'll understand just how nasty the illness is. Unfortunately it's not always agreed with. I have seen a GP only two weeks ago who insisted I couldn't possibly hurt so much..... Let me tell you, this is not a life anyone would choose. I'm 30 next month and feel three times that. I use a crutch and have now got a wheelchair so I can manage days out with my boys.
I don't have a life anymore I'm purely existing fibrosucks’’.
To support Katie’s fundraising efforts please go to:
Pam Stewart the chair of FMA UK has always loved walking as a way of keeping fit and getting out and about. Having done a few events in the past its no surprise that she considered doing this event.
Pam said: Well, I thought walking a marathon can’t be that difficult! The entrance money went towards helping street children and I could raise sponsorship for FMA UK. It would be a lovely day out walking along the Thames from Windsor to Cookham with a lunch provided. A new challenge for me.
I did a trial walk last month of about 20 miles and that showed me where the blisters were going to be. I bought some new heel inserts for my boots and had plasters and Vaseline ready (and some pain killers just in case.)
There was a group of 30 at my start time....
From Lindsey Middlemiss, Co-Founder and former Chair of FibroAction
‘’I developed Fibro in 2002, when I was 21, following a whiplash injury, infection and period of stress. It took me some years to get diagnosed and then longer to get any decent treatment, during which time I became disabled and stopped working. Eventually, following private treatment with a physiotherapist, a myofascial release massage therapist and medications from the late Prof John Davies, I got my Fibro under control.
I had been running a local support group and then got involved in supporting the PolkaDotGals Campaign, through which I got to know another young support group leader, Emma Levick. At that time, there seemed to be little focus in the UK on easy access to evidence based information about Fibro - with many sources of online information, including the NHS, being outdated - or on having a positive attitude that treatments could make a difference, both of which became key principles for FibroAction.
The European Patients Forum are interested if a lack of integrated care for patients may be impacting of the quality of their care therefore affecting quality of life.
It states 'Fragmentation in the health and social care system is constantly identified by patients with chronic diseases as a major obstacle in the way of good quality care and quality of life. (EPF paper on chronic diseases, 2012) The result of fragmentation is that patients need to actively “fight the system” just to get the services they are entitled to'
Do you have any opinions you would like to share, if so please see this link: https://www.surveymonkey.com/r/CYYLR3L
The deadline for this survey is the 14th August 2015. ThanK you for reading