About Us – Raising Awareness

Raising Awareness

FibroFlutters info flier TOP HALF CROPPED

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.

  1. 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!
  2. 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.
  3. 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 patientcentric.
  4. 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.
  5. 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.
  6. We endeavour to promote the idea of a multidisciplinary approach to medicine in other words we aim to become a true-patientcentric, 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. 

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!


Here’s a look into our world

Raising Awareness:

if fibro invisible edit 26 may 2015
Fluffmeisters first Fibro Awareness Day poster raising awareness for FibroAction 2015

FF general postcard MOTTO with fmauk info


The aim is to support the fundraising efforts of charities if we can and to help educate where needed and provide literary material to those who’d like it. Alongside that of course is our wish to encourage present and future research into Fibro, Me/CFS, EDS/HMS, & other illnesses, including #rare, in the hope that one day a group of scientists will say ‘I’ve cracked it all we need to do is…..’

We do this in a variety of ways.  Through sharing e-postcards/posters across our social media network; handing out our illness literature with other patients, doctors, consultants and whoever shows an interest; helping our sister group when they run their fibromyalgia awareness drives; supporting local charities and organisations when possible and by pointing people in the right directions for where to find information.


 


 

RAFFLE 2016

 

 

Shopper bags printed with quotes written by FibroFlutters members and raffled to raise money for Fibromyalgia Action UK for Fibromyalgia Awareness Day 2016


 

Each bag when sent out to winners contained a selection of goodies, literature and FibroFlutters printed postcards.


 

EVENTS With Sunderland Fibromyalgia Support Group

 

The top photos show us with our Special edition t-shirts (see poster above) on whilst helping out, all profits from our t-shirts were added to the shopper bag raffle and fundraiser to raise £250 towards educational literature for FMAUK 2017

Our sister Fibromyalgia Support Group in Sunderland hold many events and they do a lot of fundraising for ‘FMAUK’, aswell as for themselves.  They are a lovely bunch of people who hold a regular meeting for Fibromyalgia and chronic pain patients and their support system is very good.  They regularly have guest speakers and enjoy other activities such as crafting for fundraising.  A great way to make new friends and find people who relate to you and your chronic illness.

FibroFlutters also offer extra support for Fibromyalgia and chronic pain disorders but we also offer the opportunity for you to have an informal meet ups to discuss all things related to your chronicillnesses including Fibromyalgia, EDS, JHS, ME, CFS, Depression, Anxiety for a few popular examples.

This way we can work in tandem with our sister group as a social media support system for information and advice about fibromyalgia but also other illnesses that they may have.  We do meet but our work is predominently online with our social media network so between us we provide quite a good support system for people with Fibromyalgia and many other chronic, and even rare illnesses.

FibroFlutters campaign using social media channels, whereas our sister group holds raffles and events that we can help out at, and then both groups raise awareness by handing out posters and fliers where needed as well, such as doctors surgeries, hospital waiting rooms and even libraries.

Our sister group hold their meetings at The MillView Social Club, Fulwell every first Monday of the month unless it’s a Bank Holiday when the meeting date will be announced.

For more information please contact Sarah via:  fibrosunderland@outlook.com

FibroFlutters hold their meet ups every third Wednesday of the month informally at The Cooper Rose Bar, near the Park Lane Interchange, Park Lane Metro and there’s also a couple of Blue Badge Parking spaces and a couple of car parks nearby.

For more information please contact Carole Sian via: fibroflutters@gmail.com


 

What Is Fibromyalgia?

‘Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.’

This article has been extracted from the free Information bookletthat FMA UK provides. To have this information presented in a professional A5 booklet, as well as the other articles please request one fromthe office.

This link takes you to the FMA UK website www.fmauk.org

FMAUK – What is Fibromyalgia?


fmauk-support-group-logo-workingwith-200_1001


FibroFlutters is a support group working with FMA UK

 

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