Survey on services in the home supporting independent living/care for people with long-lasting illnesses/conditions
The European Survey about the use of technology in the home to aid people with long term conditions needs as much input as possible. Please take a little time to complete it
The European Commission—through its unit supporting research and innovation in technologies for ageing and integrated care—is undertaking a short survey. It aims to find out how people who are living with long-lasting illnesses or conditions think that services in the home (like mobile phones, the internet, or personal health monitors) which communicate with the doctor, nurse or other care professional could help enhance independent living and care. The views of patients and carers have been often overlooked in this subject area. This survey is your opportunity to make your voice heard.
Due to the arrival of Lindsay’s beautiful baby boy, the Dulwich Group has had a break. Please see the link to details of their (Re)opening meeting. Awareness Poster
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.
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.
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.
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.
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
- Carers UK - State of Caring Survey
- Fibromyalgia & Pregnancy Study - more volunteers needed
- 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