PLEASE NOTE: That myself and fellow FibroFlutters are patients leading a patient support group and a patient led social media network for our advocacy, networking and support services, we are not medical professionals.
FibroFlutters supporting eyeforpharma as #PatientAdvocates #PatientVoice
Look out for our report following our jaunt to the eyeforpharma Patient Summit next week 16-17th October to read all about the conferences and our experiences:
It is all getting nerve-wracking and exciting all at the same time now as I prepare everything I need to take to London next week. Even the packing of the suitcase is making me smile, however that could be because I haven’t actually left the NE UK, since going to Barcleona in March!
LOL, no really! I am not that lucky to get away very often because health, or lack of pennies, have their way of causing cancellations and re-scheduling, ask my friends…
Anyhoo! this is one trip that I shan’t be cancelling due to it’s importance in our World of ‘patient’, ‘health’ & ‘research’ advocacy in connection to pharma, and the medical healthcare industries.
Getting your valuable messages out to them is necessary, the things we have all discussed within our #chronicillness communities regarding patient support progarams (PSP’s) and patient-engagement programs within pharma and how they can help to incorporate us as patients into their supply chains in manners that benefit them, but also us as patients. Okay, it may seem a bit raw to say ‘supply-chains’ but in the world of business management and organisational structure that is exactly what it is! I won’t dress it up!!
We as patient’s are aware of this which is why these Patient Summits are so valuable, to both sides. The fact that pharma has softened a little and is beginning to make the changes so that patients are morehumanised within their supply-chains proves that efforts are being made.
Our trip to London will teach us to what extent they are doing this, but also what measures companies are willing to go to in order to win our trust back so that relationship building can begin. What type of relationship? well that will solely depend on the company. I don’t think there can be a universal decision made on that aspect of this due to the many different types of pharma / healthcare companies, it is down to the company as an individual component to assess themselves to find out which routes would suit them best.
Naturally this is only one aspect up for discussion, there are many more, equally as important as this.
Well I can tell you that my Fellow Founding Five Flutter Sonia and I are really looking forward to going, and to also meeting many fellow patient voices / advocates that we only know online, and also to meeting up with those that we met in Barcelona and I can imagine there will not be enough time for us all to tell each other what we’ve been up to because there has been a lot of work going on between us all right across the Globe.
Looking forward to telling you all about it when we get back
Wishing you all wellness ~ Carole
eyeforpharma Editorial Disclaimer
The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.
Our mission is to make pharma more open and valued
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.
Christine shared anEVENT she is co-hosting with Lupus Foundation of Northern California
Facebook LIVE ~ Lupus101: Essential Oils/Aromatherapy
Does aromatherapy really work?
Join the talk with Doterra Rep, Suzy Martyn, Who will be answering all of your questions about essential oil. Hosted by Christine Von Raesfeld & Lupus Foundation of Northern California
You can access this ‘Public’ Facebook LIVE event via following this link >>>
Fellow #patientleader & #healthadvocate #patientadvocate Daniel De Garza shared this awareness poster via the WEGO Health Patient Leader Connection for AIDS awareness day 13th October.
By Pamela Jessen a fellow #advocate #patientvoice. She focuses her writing on #chronicpain #chronicfatigue & invisible illness. In addition to her writing, she #volunteers with the Patient Volunteer Network in British Columbia
Also a member of WEGOHealth Patient Leader Connection
I USE OPIOIDS AND I’M NOT AN ADDICT |Ribbonrx| 9 October 2018
Shared via the Wego Health Patient Leader Connection on |Facebook by Laura Tietz | Website Coordinator, Editor-in-Chief, Contributing Writer at The Unchargeables
The goal of this blog is to give a voice to issues that are near and dear to my heart (meaning, issues I suffer from) that need a louder voice.
ribbonrx discusses their experiences with #opioids & #nonaddiction to highlight the fact that not all opioid users are addicts & it is wrong to discount it as an issue. I agree being an opioid user in the UK who isn’t up against the system in the #US
Read the blog post by ribbonrx via this link to her website >>>
Seasonal Flu can be a big risk to our RARE community and to those who work in health care. The World Health Organisation (WHO) advise that all health care workers and people who are most at risk of developing serious complications from influenza infection be vaccinated every year before the season begins. Conversely for some conditions having the vaccine is not recommended, and so protecting those around you may be the best protection. Your can read a wealth of informationHERE, to help you and your GP make an informed choice this winter.
Healthcare Unblocked2018 is the UK’s first flagship, must attend conference dedicated in advancing blockchain and Distributed Ledger Technology in healthcare.
This will be featured in the Autumn edition of Rare Revolution later in the year.
RARE News – Manchester Medics go RARE
Last weekend, MUMPS – The Manchester University Medics’ Paediatrics Society, were delighted to present their conference entitled “A Spotlight on Rare Diseases”.
The Manchester University Medics’ Paediatrics Society are proud to be the first University Society to arrange a rare disease conference that is outside London.
The conference gave students interested in the field of peadriactrics an opportunity to see a key element of their future practises as well as rare diseases and the impact that they have on the patients and their families / carers.
Rare Revolution were proud sponsors and supporters of the event and their review of this rarity will be available in the Autumn issue of the magazine which comes out later in the year.
Our mailing address is: Westfield, Cushnie, Aberdeenshire, AB33 8LP
#chronicpain
Our Neglect of Chronic Pain Has Left Many Without an Identity |Scott McKinney Ph.D| National Pain Report| 11 October 2018
Opening lines:
Imagine if, as a society, we had the inability to be good parents. The resulting context would be one where a greater need existed for individuals and groups that provided a solution to the problem.
Welcome to the Samaritans Monthly Newsletter | Samaritans | 5 October 2018
World Mental Health Day |Wednesday 10 October
let’s try to remember to campaign for better mental healthcare the best ways that we can ~ Carole aka fibrofly73
Creating better listeners at work To coincide with World Mental Health Day, we’re highlighting our Wellbeing in the City e-learning tool >>>Sign up for Wellbeing in the City
Take part in our Christmas Raffle! |Samaritans Christmas Raffle 2018 is now open
Read all the above via this link to their newsletter, please opt-in to recieve it if you like what you read >>>
Brew Monday 2019 is coming so get ready to make it bigger and better than ever before!
Get together with your friends, family or workmates on Monday 21 January, have a cuppa, raise vital funds for Samaritans and beat the January blues.
You’ll be able tosign up for afree fundraising packfrom October 15th – so keep an eye on Twitter for more information. Keep up to date by following us on Twitter >>>
ARMA Newletter | Arthritis & Musculoskeletal Alliance |October 2018
Harnessing a collective focus to transform MSK services
In this issue
CEO update
Harnessing a collective focus to transform MSK services
“MSK – Not a challenge anyone can solve alone”
Excerpt:
“ARMA is all about collaboration, seeing the value of working together, the power of combining the perspectives of patients alongside a range of professionals. We hope that the NHS ten-year plan will also recognise both MSK, and the importance of a multidisciplinary pathway approach to supporting people with MSK conditions.”
Restrictions on access to care – the impact of waiting for surgery
Guest blogby Justine Clarke, Chief Operating Officer, British Orthopaedic Association
We need you to support ARMA during Bone and Joint Week 2018
12-20 October 2018
12-20 October is a time of important collective campaign activity for ARMA members, with Bone and Joint Week.
The theme of campaign is:
“Musculoskeletal conditions: The elephant in the room?”
During #BoneJointWeek ARMA will be releasing a variety of infographics shariing important messages which the professionals within ARMA’s policy and Communications team have designed and created.
They ask us to share / retweet from @WeAreARMAand to also keep our eyes peeled for vlogs from the event too
When retweeing or sharing on other social media channels can you please use the following hashtag#BoneJointWeek
12-20 October – Bone and Joint Week:
12 October: World Arthritis Day
16 October: World Spine Day
19 October: World Paediatric Bone & Joint Day
20 October: World Osteoporosis Day
Bone and Joint Week 2018 is part of an international campaign to improve musculoskeletal health.
Webinar – Commissioning for Quality:
Community-based Rheumatology Service | 19 October 2018 – 12.30 – 1.30
Who should attend? Commissioners, GPs, clinicians working in rheumatology services.
Presenter: Erica Gould, Nurse Consultant at Community Rheumatology Service Modality Partnership
Webinar – The British Society for Rheumatology’sChoosing Wisely UK Recommendations 1 November 2018 12.30 – 1.30
Who should join? Everyone interested in optimising care for people with musculoskeletal problems, including patients, carers, clinicians from primary and secondary care, allied health professionals and commissioners.
Presenters:Charlotte Sharp, Rheumatology Specialist Trainee, HEE(NW) and Clinical Academic Fellow, NIHR Collaboration for Leadership in Applied Health Research and Care Greater ManchesterLizzie MacPhie, Consultant Rheumatologist, Lancashire Care NHS Foundation Trust, and Chair of the British Society for Rheumatology’s Standards, Audit and Guidelines Working Group.
Public Health England – Case study and report on lessons learnt A report by Public Health England has been published in the World Health Organization’s European journal, Public Health Panorama.
“Developing partnerships and a whole-system approach for the prevention of musculoskeletal conditions in England”
And much more!…
MSK services survey – Please let us know what is happening locally
As part of their Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target their support for improvements.
Link to the newsletter where there are lots of things to read in this issue! >>>
It’s a tool for sharing knowledge and collaboration, an online library of resources. If you know of reports, evidence, guidelines that should be posted, please let those authors and organisations know they can add content.
New research from Pain Concern on easing pain appointments | Pain Concern | October 2018
Helping focus pain appointments with the Navigator Tool
This edition has been funded by funded by the Health and Social Care Alliance and Edinburgh and Lothians Health Foundation
Adam Wilson | Broadcast Assistant | Pain Concern said in his correspondence –
“In 2015 Pain Concern released its report ‘Breaking barriers to self-management of chronic pain in primary care’, marking the end of the first part of its ‘Breaking Barriers’ project. Its aim was to highlight the commonly occurring barriers that patients faced during one-to-one appointments with healthcare professionals, and to advance the primary care management of chronic pain.
Phase two of the project was to produce a ‘navigator tool’ to break down those barriers and prepare patients and GPs in order make the most out of their appointments. Phase two is now complete, and in this edition of Airing Pain, Paul Evans speaks to the researchers, patients, and healthcare professionals that allowed this project to happen.”
The Navigator Tool is free to download from Pain Concern’s website along with the study, the report, FAQs, and a wealth of resources from experts into managing long term pain. Just visitpainconcern.org.uk/easing-pain-appointments/
Contributors:
– Dr John Hardman – GP, Navigator Tool study participant – Professor Blair Smith – Scottish Government Lead Clinician for Chronic Pain, Professor of Population Heath Science, University of Dundee – Dr Louise Bailey – GP, Navigator Tool study participant – Renee Blomkvist – Pain Concern researcher for the Navigator Tool – Lucy Murphy – Patient, Navigator Tool study participant
Pain Concern Registered Office: Unit 1-3, 62-66 Newcraighall Road, Edinburgh Eh15 3HS Company Limited by Guarantee, Registered In Scotland No: 546994 Scottish Charity No: SC 023559
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trade mark.
#PAM2018
#disability #disabilitynews
Disability News Service (DNS)
A great site for health and disability news
Disability News Service (DNS) is run by John Pring, an experienced journalistwho has been reporting on disability issues for nearly 20 years.
He launched DNS in April 2009 to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people.
The International Standard Serial Number for Disability News Service is: ISSN 2398-8924
#Neuroscience #neurology #neuroscience
Neuroscience Newsletter | 10 October 2018
Enjoy our latest Neuroscience News updates from the last 24 hours. You can read the full articles by clicking on the headlines or the links embedded in the summary.
2018-10-10 A new brain imaging study reveals how the midbrain and striatum, two key areas of the dopamine system, become more active when a person updates their beliefs about the world around them.
2018-10-10 Researchers reveal the growth rates of a baby’s brain circuits may help to predict the child’s IQ, emotional behavior and cognitive abilities at the age of four.
2018-10-10 A new study adds to growing evidence that your diet can have significant impact on your mental health. Researchers found people who consumed more fast foods had higher rates of depression than those who consumed a seafood rich diet.
2018-10-10 Researchers report the reason many shun away from physical activity as adults may be rooted in childhood experience. The study reveals negative memories associated with PE classes during childhood may generate negative response to participating in exercise as adults.
2018-10-10 A new study reports physicality and political attitudes may be linked, for men at least. Researchers found more muscular men tend to prefer political attitudes that favor inequality, and the tendency to have positive attitudes toward inequality increased as upper body strength increased following months of physical training. The study, researchers report, challenges conventional belief that people’s political views are shaped by logic and reason alone.
2018-10-10 A new study reveals a history of binge drinking leads to more instances of drinking under stress and when anxious in males, but not in females
“PatientsLikeMe is the world’s largest personalized health network that helps people findnew treatment options, connect with others and take action to improve their outcomes.”
I am Proud to be a member and Ambassador of
@patientslikeme, the world’s largest personalized health network helping 600,000+ people with 2,800+ conditions find new options for treatments, connect with others and take action to improve their outcomes.
A chance to change the future of personalized health.
Very soon PatientsLikeMe.com will have their own spot on the website where you will have access to the links to their community as well as their news and information. ~ Carole
#PAM2018
#NeuroendocrineCancer #NETS
RonnyAllan.NET – Community Newsletter Covering August 2018
Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.
Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!
If you like what you read PLEASE remember to share and opt-in
Only 3 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there?
I can’t believe how time has flown past and the conference is only a few weeks away. It is really exciting to be involved and helping to collaboratively bring about changes within the world of medical healthcare.
Helping to close the gap between pharma and patients and increase relations, encourage collaborations and stave off the ideas that patients can be manipulated.
Thanks to eyeforpharma’s regard towards Patients, ‘Patients Included‘, and giving us a platform to share our patient voices, and our input during roundtables and panel discussions at their pharma conferences we can help pharma improve the products and services they make. Help improve patient engagement programs / or, PSP’s Patient support programs between pharma and patients in ways that improve service design, product and service quality using collaborative methods and utilising all stakeholders to produce end results.
Will patient-centricity win-over pharma in London, how are companies becoming patientcentric, which companies are trying to be patientcentric?
Is patient- engagement working for pharma, what isn’t working? It can’t all be perfect!?
How is the concept of ‘Patient-engagement’ progressing is it proving to be useful, or does it need to be reassessed as a tool?
Innovation is also hot-topic as new ways of producing things have developed, including the use of AR, VR, AI, 3D printing and robotics to help improve surgical procedures, general medication delivery systems and even new bones and not that long ago even skin tisue, for a few examples.
Also, the different new ways that innovation is assisting clinical research and especially biopharma, health education videos for hospitals and HCP’s, and much more from the world of digital. Will we see some of that in London within the innovation, science and technology sector of the conference?
Of course aside from the World of Medical Affairs is the Impatient Conference and the part of the journey where we really do hope to make a difference. It really has been designed by patients and the hope is that we can help bring patients and pharma closer together at this Pharma & Patient Co-creation event.
How are pharma increasing patient relations, are they rebulding our trust yet?
How will we as patients convince pharma to make the necessary changes required to rebuild their pharma-patient relations?
What does pharma believe it should do? Do we as patients agree with pharma? If not, how do we compromise so that solutions can be formed and progression can continue. Otherwise this time next year we will still be discussing it!
It’s time for pharma to stop ‘saying’ and start ‘doing’, be more proactive and begin to move forwards.
Patient Summit Europe 16-17 October 2018, London UK
Europe’s Top Pharma & Patient Co-creation platform to attend in 2018
“If you don’t partner, patient centricity will never become more than just an idea.”
250+ attendees
40+ speakers
15+ case studies
20+ roundtable discussion topics
Including >>
The Im-patient Conference which is new, and its bold.
No longer is eyeforpharma HQ in the driving seat, instead it is entirely designed, created and hosted by patients. We believe that in doing so, we will capture the true essence of what patients want – and put them in the driving seat.
Follow this link to see who is attending and register to join us >>>
Join the most forward-thinking meeting of leading marketers in Europe and learn to:
Redefine HCP relationships Develop a deeper educational partnership with your customers and transform engagement
Embrace digital. Be the future Implement a digital-first communication strategy for effective and efficient customer interaction
Educate to innovate Eliminate fear of innovation by empowering your workforce with the capabilities needed to form lasting HCP relationships
Deeper insights, real value Analyse data for actionable insights that result in a better understanding of patient needs and position you as a trusted presence
eyeforpharma Editorial Disclaimer
The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.
Our mission is to make pharma more open and valued
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.
Awareness Campaigns
Got a campaign you’d like to share, drop me an e-mail, Carole at fibroflutters@gmail.com
Fundraising to raise £20,000 for Fibro drop-in centre | Rock Off Fibro ~ Fibromyalgia awareness
Quoted from Just Giving page:
“Weʼre raising £20,000 to Help fund the opening of the UKs 1st Fibromyalgia, drop in center to drive our work forward helping those with Fibro , Ptsd , Chronic pain”, Jackie Williams ~ Rock Off Fibro, Fibromyalgia Awareness
Please can you help such a worthy cause, patients are trying to help other patients?!
Every morning and evening I was posting several links to a variety of online newspapers and thought that maybe I could post from here via newsletters, our website/blog, instead.
This is to ensure that all the news and stories go out to everyone that follows us across the social media platforms that we have profiles/accounts.
There’s a few links to my favourite online newspapers for finding a variety of health related news from other Chronic Illness Bloggers & Warriors, for up to date news about health conditions such as latest research papers or people sharing hints and tips about how they cope day-to-day.
Let us help them by showing our support by sharing the news and stories that they share.
If you publish a health related paper.li or other health news magazine/paper that isn’t listed and you would like it to be, please contact me – Carole Sian at fibroflutters@gmail.com or use the form below and let me know, always happy to help 🙂
FibroFlutters continuously
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed 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!!
Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.
Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!
If you like what you read PLEASE remember to share and opt-in
FibroFlutters – Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK and offering online support via our social media network across the globe.
PLEASE NOTE:We are not medical professionals nor claim to be, and remember that you should always consult your doctor about any health problems and not use Dr Google, or rely on information that you may read online through 3rd parties.
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