- About Us – our aims and desires, missions and wants as a patient led group.
- Advocacy & raising awareness
- Advocacy & raising awareness (Continued from Page 2) – Including:
- Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton
- Is pharma being ‘responsible’ enough? Back to eyeforpharma Barcelona and I mean business this time!!
- Fatigue: My life, your research’ event
- Catalyst event, FindMeCure, NIHR PRA, PFMD
- (SPONSORED) Get the brochure and come and see me at:
- 16th Annual eyeforpharma / Patient Summit 15-16th October 2019:
- (SPONSORED) Register: for this #Publichealth event
- 7th annual Health & Justice Summit event in November 2019 at Bristol, UK | Convenzis Group | Carole Scrafton / FF – Social media sponsor #PublicHealthandJustice
- Health communications & Sharing information
- #chronicillnessVOICE, Nuzzel News, Paper.li’s, News-Medical newsletters
- Social media community platform link
- Where can you find us?
- FibroFlutters Super Highway >>> Our network links
- About Us –
- How we began
- A flashback to the beginning
- Giving support and being there for the community
- Artistic Works ~ Header images & posters
- How we began
FibroFlutters is an informal ‘patient-led’ support group based in Sunderland, North East, UK & we are there for people with Fibromyalgia, Me/CFS, Chronic illness, Chronic Pain, EDS/HMS, mental health, musculoskeletal disorders, hypermobility, & other debilitating #invisibleillness, including rare diseases.
We are a friendly bunch of people who get together, ‘informally’, once a month, every third Tuesday of the month, to share our stories, discuss health issues and current awareness campaigns and projects etc.
All are welcome to join us, it isn’t a formal event but we’re also not just a drop-in either, we do have information pamphlets for a whole variety of health conditions from the Musculoskeletal side of chronic illness, also EDS, ME+CFS and access to other information too. We also sometimes have guests join us for lunch when we meet. Remember! Not even we as founders can get to all of the meets… because of our health.
We have a sister group that runs their ‘Fibromyalgia’ meetings on the first Monday of the month at Millview Social Club, in Sunderland. If you’re local, and newly diagnosed, I can tell you that they will help you find answers to some of your questions. This group does require membership.
Together as groups we work, voluntarily, to help support the chronically ill in Sunderland, and for us across the NE UK and then Globally through our Social Media Network.
FibroFlutters is also a Global online advice and support network across many social media platforms with a presence in varying communities as well right across the globe.
We use this network that I have developed to do a lot of our advocacy work, but we also use it to network with other chronic lifers, and also people from within other areas of the medical healthcare industries. It all happened because of a communication problem that needed fixing and now we span the Globe with a fantastic presence from across the pond that matches that from here in the UK & Europe putting us in a rather unique position when it comes to #chronicillness health / research / patient and more recently also pharma advocacy.
Our illnesses aren’t different because we live thousands of miles apart, but how medication policies work are what make it all different depending on whereabouts in the World that you live. The treatments / medications are different from one country to the next. Drug pricing issues and the opioid crisis affecting patients and causing many to take their own lives, which just shouldn’t be happening. People being made homeless and going without pain medications , or other medications.
Here in the UK it is the post-code lottery as to whether some drugs are made available to you and patient’s across our country petition all the time for issues related to it.
Campaigning on a Global scale is quite a large mission, but we have done it for Fibromyalgia, MECFS, Lyme, and many more, to get the attention they need and deserve.
Campaigns are a fabulous way to help educate others, whether they are patients, or carer’s, family members… even health professionals! and now even pharma!
Education is just as important as campaigning, from all sides of the fence, and #notjustpatients should also be learning in order to keep a balanced progression if they wish to succeed in gaining our trust enough to work with them. Back to ‘old-school and the drawing board for some execs I think. Learning how to do what you already do, using a completely different method, must be particularly daunting, however it is necessary in order for everyone’s final desired incomes to be achieved. Even patients have to learn it too!
Of course this will be using digitalised processes and systems to make a streamlined job of their work and the hope is that the transition into the new World of Digital Health will be a relatively smooth one. It is already upon us all. Let’s face it, how many of you use health mapping apps, or apps that boost your mood and send you memes of positivity. No matter what making the move to utilise and multi channel FibroFlutters was a good one!
HCP’s and nurses have to learn new medical devices that are digital, robotic and general new pieces of med-tech.
One key problem that fits under the ‘education’ umbrella and one that often get’s said to me is that they don’t understand all the different jargon’s, and to be honest who can blame them. This isn’t just patients on meds with foggy brains either!
Time for a ‘new language’ that is versatile and usable by all stakeholders, universal, and can be used right across the globe. It should help reduce a lot of ‘mistakes’, and, ‘misinterpretations’ I would think, and possibly end up preventing so much by means of wasted resources and maybe even generate / drive more sales, patient interest and really does sound like a solution. However who will do it? How much to invest in it? big questions with no answers, yet.
Many don’t even seem to think a new language is necessary, well here at FibroFlutters we do!
It took me 2 months of researching to spot that all stakeholders were working on these patient centred processes and work models while I’d been designing a ‘Multidisciplinary Medical Centre’, which would be utilised by all stakeholders so that patients had access to them all and our data was kept in one place and accessible to all parties. Completely unawares.
I mean honestly, I was so involved in building the infrastructure of FibroFlutters so that we had a proper communications system across all the social media platforms. Not everybody was on Facebook, or twitter, in fact some didn’t even have e-mail access due to not affording a computer, or the internet bill.
Little did I know what was happening outside my work-window!
Naturally I have steered FibroFlutters into the middle of all the stakeholders as if to draw them in towards us, and it is working too.
Encouraging our members / followers /readers to view themselves as patients is proving difficult in fact and I am under the impression that we don’t like it very much. I know I don’t like it because I’m a patient 24/7 and don’t need titles to remind me of that fact. Everyone has a reason of sorts for these things, but the one to blame is that change scares people, the threat of change scares people, even though they shout for it.
Being connected to all stakeholders, and welcoming everyone to our network #notjustpatients is a way to show that we can communicate with each other. If it is possible share that then collaborative work should also be possible, which of course is all within our efforts to prove that a multidisciplinary approach to our healthcare is a viable and much-needed request from chronic patients with multiple conditions, and co-morbidities, or multi-morbidities.
One of our wishes is to give people the opportunity to share their experiences with others and know they are not alone, advice & share useful information & also to help raise awareness of our differing Chronic/Invisible Illnesses.
We also have many other groups/pages/profiles across social media that we use to achieve our aims of Patient, Health, Research and Pharma Advocacy and also gives us the ability to provide advice and offer a friendly hand of support across many social media platforms. It also provides us with a network for sharing information such as the latest research, news and events from a cross-section of areas within the medical healthcare industry.
These links can be found towards the end of this post
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
About Us – Mission – Our main AIMS / GOALS
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness patients can receive the type of care and treatments that they need.
- Sunderland in North East UK getting its own specialist centre where we get treated for our multiple conditions simultaneously by a team, instead of one by one. Having all of our data stored in a way we don’t have to keep repeating ourselves every time because we often miss key things which could be harmful. Digital Health should prevent that from happening. WE believe that our Multidisciplinary Medical Centres would help to reduce the cost of healthcare in the long-term, especially if the collaborative approach to medical healthcare actually works!
- There has been a lot of good interest in this idea from across a wide variety of people including, pharma, HCP’s, patients, carers and even digital & innovation, plus members of a political party that I am also a member of.
- A specialist centre could provide specialist programmes and education with integration of patients and medical professionals and involving patient-engagement. Being connected to the local hospital will also encourage teaching opportunities as Sunderland University has just began offering Medicine as a degree. Of course, this opens up a whole brand new avenue of opportunities that will help us become completely patient centric.
- The centre would also be a headquarters for information with a data hub storing information such as where support groups can be found, charities and organisations, speakers, and academics/educational/researchers/pharma can use the facility for meetings / speakers /education.
- In addition to storing geographical and contact data the hub would also store our medical data making it easier for each sector to research, find possible research candidates, network for collaborative studies / projects in order to help with PPI and patient-engagement, giving our region better access to information as a whole. It’s a distant wish.
- We endeavour to promote the idea of a multidisciplinary approach to medicine in other words we aim to become a true patient centric, patient-led, patient group, to help develop and increase #patientempowerment #patientvoice within the realms of research; healthcare providers; pharma, bridging the current gap regarding accessibility whilst building a communication avenue between patients, HCP’s and pharma, and all other stakeholders within the medical healthcare industry.
- To be as centric as the next guy!
Of course if something like were to work it would make sense to roll it out nationally, which of course is also a distant dream but one we will also fight for!
Read what activities and events I got involved with during 2019
Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
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