Fibromyalgia from a Carer's Perspective
This is not your usual post about fibromyalgia for the simple reason, I don’t have it but that doesn’t mean I’m not aware of it or that I don’t care about it, I do. The reason for this post is that my partner suffers from fibromyalgia and I would like to give you a medical definition of this illness but if truth be told I don’t have one. Yes I’ve read about it on various web sites and I’ve seen the list of symptoms but I want to tell you what I know about the illness because I see it every day.
National Voice Guide to Care & Support Planning
Earlier this month National Voice launched their Guide to Care and Support Planning.
It is a fantastic guide designed for and by people who use services, and carers, with National Voices members and partners.
Why do we need care and support planning?
You live with your condition and/or disability every day and make decisions about how to manage it. Over time, you learn what works best for you, what information, care and support you need and how it fits into your life.
The professional or supporter you work with has skills and knowledge to help you understand their condition or disability and the choices for monitoring, treatment and available support.
Care and support planning makes the best use of you and your professional or supporter's expertise and the time you spend together.
Campaign Blog from Chair, Royal College of General Practitioners
Please see below, recent blog from the Royal College of General Practitioners
We have been actively gaining support and raising awareness of the Put patients first: Back general practice campaign on social media, within the health community and with our politicians.
Our first campaign Twitter chat
I recently hosted my first Twitter chat for this campaign. Thanks to everyone who got involved – you asked some great questions and sent hundreds of tweets. This enabled us to reach nearly two million twitter accounts in the week alone with #putpatientsfirst. I would particularly like to thank David Nicholson for getting involved, it is wonderful that our campaign message is getting through to NHS England. The media also picked up on it – GP Online wrote about it beforehand and joined in the discussion, and we had support from the Guardian Health Network. If you missed out on the Twitter chat, you can watch it on our Storify.
Arthritis Watch England survey launched!
Please see the message below from Arthritis Research
People with arthritis have been telling Arthritis Care that services are being cut, waiting times are going up and they are finding it harder to access services. We think it is vital to find out how widespread these problems are.
Arthritis Watch is our new project to gather evidence from people across England of arthritis services in their localities, (i.e. their local Clinical Commissioning Group areas). This will be collated to build up a national picture of the state of arthritis services, including shortfalls in provision and examples of good practice.
Carers UK - State of Caring Survey
Each year Carers UK carry out our State of Caring survey to show just what it is like to be carer. You can help us expose how hard it can be to care and what needs to change to make carers’ lives better.
You can fill the survey in here. We’ve shortened it compared to previous years and focused on how caring affects finances, health and the ability to live your own life.
Prescription charges to go up by 20p
David Barker, Leader of the Prescription Charges Coalition of organisations and Chief Executive of Crohn’s and Colitis UK said today:
“Millions of people with long-term conditions will be bitterly disappointed by the Government’s short-sighted decision to put up the cost of their essential medicines by 40p over the next two years.
“Already, over one third of people in work with a long-term condition find it hard to pay for their prescriptions and are rationing or stopping taking their medicines, compromising their health. These unfair, outdated and inequitable charges are forcing more people with long term heath conditions into medicine poverty and we continue to call for the government to follow the strong example set by the other UK countries and abolish prescription charges for people with long term chronic health conditions”.
Prescription charges to rise 20p. Sign our petition bit.ly/1kgbHyF
Fibromyalgia & Pregnancy Study - more volunteers needed
“This study has not yet attracted enough participants from its original advertisement so the criteria has been changed in the hope that more eligible people can be recruited. Please support this study if you can as each step forward in understanding how fibromyalgia affects people helps.”
- are approaching your third trimester of pregnancy, are new mums or mums with young children,
- have been diagnosed with fibromyalgia prior to the onset of your pregnancy,
- speak English fluently,
- Petition to end prescription charges in England for people with Long Term Conditions
- Mendip Fibromyalgia Support donate books to local Library service
- Fibromyalgia Awareness Dates 2014
- Effects of Music Therapy on Fibromyalgia
- Online fibromyalgia learning package
- Charity Night in Aid of FMA UK & Bury Hospice