I think that is a word that a lot us we will be saying for a few days after our opening meeting for 2018 yesterday in Sunderland UK, for Chronic / Invisible & Rare illness.
FibroFlutters always post a thankyou to the folks that attend out meet ups because we know that the illnesses we all endure daily make it difficult to do. We endure a couple of hours of discomfort to sit in the company of like-minded and like-bodied people where we share our woes, joys, failures and successes. “What is different about that?”, I can hear people ask. Nothing. The fact is that we are one of many groups in the NorthEast that offers support to people with chronic illness, but FibroFlutters is where you can talk about them all, to others who also live with multiple conditions with high levels of comorbidity.
The reason for this is because as Founding Five Members between us we have a very long list of health conditions ranging from varying (RMD’s) Rheumatological and/or Musculoskeletal Disorders, Connective-Tissue/Collagen/Zebra conditions, heart, lungs, bowel, varying gynae & gut/digestive…. you all get the gist! Plus, we need the support too!!
When 1pm arrived I couldn’t believe the turnout with new faces from Tee-side and Sunderland and friends from Sunderland Fibromyalgia Support Group and the local ME/CFS Support Group along with a few FibroFlutters.
We also welcomed Steve Hansom the local Labour Ward Candidate for St Michaels Ward in Sunderland who very kindly popped in to meet us after I invited him along. I was very pleased that he came and got see the hectic chaos of chronic illness warriors telling their war stories and how they’ve been combatting them. People sharing and caring, networking, learning and genuinely chattering… a lot 😀 Of course, he was also very kind, observant, helpful and offered his hand of support out to the group showing his commitment to helping those who may be in need.
When I shared the event across our social media network I said that there a special guest coming. As it happened due to Steve popping along we technically had 2 special guests
A huge thankyou to Steve for taking time from his busy schedule to come along and see what I and FibroFlutters do
This year I’m asking the people who attend to sign in and say what illneeses they have… in brief! This will enable us to see exactly what our members/followers may require help with, for example there may be a health condition, ‘specific’, support group nearby that they may benefit from. The amount of differing conditions was pretty good and I know that there are a lot more that they could have put down, but I only gave them a small space to write in. This limited them, and was an error on my part because I designed and printed the form in a hurry. 😮
We did actually have a good ole chinwag between us all whilst introducing each other and saying why we were there, where we’d come from and what support networks we had.
Apart from all that we also made new connections with each other which was the important point of it all. I know that I am looking forward to our projects this year, and got the impression that so did the others. It will be interesting next month too see if the list of conditions changes 🙂
- Lesson one: Alter the sign in form
My deepest regret yesterday was not getting any photographs, but it didn’t even enter my head because everyone was very excited to meet new people and see old friends after our Winter break for Hibernation. Lot’s of conversations and stories being shared.
- Lesson two: Remember to get photos.
At every first meet up of the year I announce our campaign and yesterday was no different. There were a number of things to announce so I had to try and squeeze them in amongst our conversations.
- Of course the main discussion topic to begin with was our recent change towards providing proper support for our zebra members, including myself and Vicky. I’m talking about our decision to choose to become a Volunteers for Ehlers Danlos Support UK (EDS UK).
- As ‘Volunteer Area Coordinators’, for EDS UK, Sunderland and surrounding areas, we can now begin to offer legitimate quarterly meetings for anyone with EDS, or, Hypermobility Spectrum Disorders, Hypermobility associated problems.
- The EDS UK NORTH EAST Facebook support group and our quarterly meetings are only available for members so signing up for their free membership with EDS UK via this link is important >>>>
www.ehlers-danlos.org | FREE membership sign up
Our Main Aims & raising awareness / advocacy
- Up the ante and start working harder on our patient and research advocacy work.
- Start connecting with the other support groups and asking if they wish to join a network where we can all interact within the NorthEast UK.
- There are many groups some of which are for rare diseases so there is only one of them. It is useful to know that they exist so that as a networked community we can all work together to support those of us that need it.
- We have posters and leaflets for EDS UK to help with advocacy work where we will hopefully be able to ask our GP surgeries and hospitals, libraries, university & college etc, if they can display them.
- Basically, developing a database of all of the groups within the NorthEast UK. Being newly diagnosed we never know where to look for support but in the NorthEast UK there are many of us out there!
- We will be continuing to give our support to our sister group ‘Sunderland Fibromyalgia Support Group’ who celebrated their 24th birthday 2 weeks ago. Amazing group too!
- Include our Mother Hosts FMAUK and Sunderland Mind more and reconnect where required. We will now be officially volunteering/advocating for EDS UK too.
Our Annual Campaign to raise awareness into Fibromyalgia and to raise some pennies for Fibromyalgia Action FMAUK is always based around a fluffie little character and this year will be no different.
However, I’m not telling you the general public what it is because it is far too early! 😉
May 12th is also our birthday and this year we will turn 4 years young.
Patient and Research Advocacy >>>
- National Institute of Health & Research Patient Research Ambassador Inititive (NIHR PRAI) who FibroFlutters will be working closely with this year, designing a collaberative project for the Summer. We are already working with our local CRN Lead Nurse | CRN: North East and North Cumbria | NIHR Clinical Research Network (CRN) regarding meeting the Patient engagement Team.
- Barcelona eyeforpharma Conference 2018 where myself and fellow Founding Five Member Sonia Hawkins are going to moderate roundables as Patient & Research Advocates for the first time. It is a huge experience for us as we are keen to broaden our connections across all industries connected to medical health care, specially those putting, ‘us’, the patients at the heart of their agendas. In the world of ‘Pharma’ things are changing and we like their ideas. Of course I have a great personal interest as a #researchambassador and we are honoured to take NIHR and PRAI with us on our educational journey too.
We can’t wait to come back and share our experiences with them, and you.
16th ANNUAL eyeforpharma Barcelona & AWARDS | 13th – 15th March 2018 | Where Pharma Becomes the Solution
We are going to Barcelona representing patient voice, not for FibroFlutters, but rather as the voices of the ‘patients’ who are members and followers of us across our social media network. We have never viewed the work we did as being ‘patient advocacy‘, I suppose because we don’t like to remind ourselves that we’re patients, so this is a relatively new concept to us just as much as our knowledge of ‘modern-day‘ pharma. We are going to learn from them, not just take our patient voices, and are very fortunate to have been given the opportunity to do that by eyeforpharma.
We have always been research advocates and find ourselves in a very unique position going to this conference because it will educate us about the pharmaceutical side of the R&D for medical health. Something that we never thought we’d ever get the chance to do.
A great start to 2018 regarding our efforts as patient and research advocates!
Conversations didn’t stop all afternoon until our special guest arrived when suddenly, everyone pulled their chairs closer and avidly listened.
Of course! Our Special Guest was Kevin Short my local CRN Lead Nurse | CRN: North East and North Cumbria | NIHR Clinical Research Network (CRN).
Or as I call him, ‘my PRAI dude‘, then folks know who I’m talking about!
Kevin was great at expaining who he was and why he was there which was to discuss the upcoming project in the Summer, but to also explain that there are many ways to get involved with research. Many folks believe the only way to get involved is through taking part in a clinical trial, when in fact there are a lot things that people can do.
For instance, I recently registered with PRAI, and also Devices for Dignity who are also a part of the NIHR. Even just signing for newlsetters and sharing important posts is playing an important role as a research advocate.
- To see what things you can do please follow this link >>>
- Lesson three: I should have taken some info leaflets/printouts for them to take home
It was fantastic to see everyone enthused by the conversation regarding the Summer project and happy to say that it has left us all eagerly waiting for the next conversation with Kevin and our local Patient-Engagement Team when hopefully those who couldn’t make it on 20th will get to meet them.
A massive thankyou to Kevin for taking time from his busy schedule to come along and talk with us.
It is safe to say that I think most of us took something great away with us on 20 Feb, but for the newer members they didn’t really get the attention required. However, I did say that at the start of the afternoon, that at the next meeting there wouldn’t be as much stuff to announce and easier for me to get round people. We kind of took over the bar a little which leaves me to our final thankyou to the General Manager and his fabulous staff who were very attentive, at
THE COOPER ROSE
It is a great spacious space for a bunch of disabled people to meet, especially when some of us arrive in wheelchairs, it also has a disabled loo that is easy to find. The space is big enough that even when busy you can still hear each other but must admit my ears go crackers when too many conversations are going on at once.
Their prices are reasonble and the menu is good and varied catering for different dietry requirements so a perfect place for us to get together once a month and connect.
Facebook: The Cooper Rose @thecooperrose
March 13th -15th
16th ANNUAL | eyeforpharma Barcelona & AWARDS 2018
Where Pharma Becomes the Solution
This year myself and fellow FibroFlutter Sonia are off to this superb pharma conference as
We’re both looking forward to being involved, having a #patientvoice, and are very grateful for the opportunity.
See us amongst the fabulous line-up of other fantastic speakers from the World of Pharma that are attending the event
Carole and Sonia listed under PATIENT VOICE
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