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
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access to evidence based information about Fibro - with many sources of online information, including the NHS, being outdated - or on having a positive attitude that treatments could make a difference, both of which became key principles for FibroAction.
We are delighted to announce that this year’s conference, in aid of World Scleroderma Day, will be a joint event held by The Scleroderma Society and the RSA on Saturday 20th June, in Manchester.
This year’s theme, UNVEILED, aims to reveal treatments and topics to help those with the conditions, share information, hear about the latest news and research into the conditions, learn some self management tips and techniques and experience some treatments whilst enjoying yourselves by catching up with old friends …and making new ones.