Paul Scully, MP for Sutton and Cheam, visited the group today. He spent time talking to our members about fibromyalgia and the problems that sufferes face. Thank you to Paul for spending the time with us – hopefully he will link up with Alok Sharma MP (Reading West), who held a debate on fibromyalgia in Westminster Hall.
We reported on her debate – click on link.
Anyone interested in the new ‘Duty of Candour’ can find out more from this link to the Nursing and Midwifery Council.
This is an important development and puts a duty on medical staff to be open and honest when things go wrong.
Thank you Chris for sending us this poem.
A medial condition,
One in twenty-five people suffer from it.
A friend of mine, Jakki, is suffering tension,
With this, and wanted it brought to general attention.
The symptoms are:-
Widespread muscle pain,
And more women are affected than men.
The pain is generally pain in the tissue of the muscle,
Which I imagine would cause a lot of hassle.
Also, headaches, and irritability.
Oh, and memory loss,
Now I remember, is what Jakki told me.
I understand that the pain runs deep.
And fibromyalgia also affects sleep.
I understand that there’s inflammation,
But I don’t have any more information.
FibroAction and Fibromyalgia Association UK (FMA UK) will be working together more closely in the future. The trustees of each charity decided it would be in the best interests of both the charities and the people they serve to combine their expertise, experiences and resources. The trustees are now in talks regarding how to proceed with this process, which may take some time.
Ella Vine, Chief Executive of FibroAction said: ‘This is a very exciting time for the charities and for all of us in the wider fibromyalgia field. This is a very positive step in the right direction. We are all delighted about it. The charities have a national scope, undertake very similar work, serve the same population, have the same group of supporters and the same aims. It will therefore be good to combine our resources to ensure that people affected by fibromyalgia in the UK receive the best possible support and that our voice is stronger and heard by policy makers. We are thrilled about it.”
Pam Stewart, Chair of FMA UK said: “The trustees of FMA UK are delighted for FibroAction to be joining with the trustees of FMA UK to be able to move forward together with their support for people with fibromyalgia. This should allow for an even more proactive role in ensuring the best treatment options for fibromyalgia.”
Thank you to those who attended the craft session, held in January.
It was an enjoyable session, social and something different to do. It was also felt that it was nice to be with a group who understood some of the challenges of the condition – more formal craft sessions go too quickly and it can be difficult to keep up.
Make sure you have the February date in your diary.
Jacqui has found the following website which she thought you might want to have a quick look at … Open Letters
A slightly belated, but nonetheless heartfelt, Happy New Year to all our followers and members.
Today we are meeting at SCILL to look at the programme for the coming months. Lots of good stuff going on. Don’t forget, you can pop down to SCILL in Robin Hood Lane between 10am and 2pm. There is a great cafe at SCILL, so you can pick up a nice lunch too.
On 1 October about 1pm, we will be at SCILL having tea and cake to celebrate National Older Persons Day. Do pop along and see us, join in and find out more about the club.
The fmcppopinclub is part of the Sutton Wellbeing Network. We attend the regular meetings.
If there are any issues you want us to take up on your behalf concerning fibromyalgia and chronic pain and the services (or lack of them) that you receive, please leave a comments and we will make sure it is raised.
We are currently working to get a Popin Club set up in Kingswood. This is hoped to start in January 2015 and will be located in the social club on the Brighton Road.
Get in touch with us for further information or to register your interest in joining.