Patient Leader

Hello, I am Patient Group Leader of FibroFlutters (FF) a support group for people with chronic, invisible or rare illness, incl. Chronic Pain Disorders/Fibromyalgia, EDS, Musculoskeletal, Rheum, EDS, & access to Mental Health help through the local charity. Sunderland Mind centre based in in North East UK. Carers, nurses, family members etc have always been welcome, even HCP’s, we even had a political candidate once. FibroFlutters also has a Global Social Media Network that I manage & coordinate it is our 'tool' for networking & engaging, is our hub for sharing relevant information/news to 'all stakeholders' within the healthcare industry, a support network for patients where they know they can get advice & where to get information. As it's 'CEO' I've expanded & developed it into an advocacy group for patients; health; research; pharma. Including sections for Professionals & Patients Voice/centred/included etc, & resources. Sometimes as chronic patients we just want support & to talk because we're lonely & fed up of being by ourselves all the time, or we discuss the posts/articles we share in relation to our illnesses & how they affect us on Twitter & in Facebook groups. Our Facebook Main Page is our newsroom, closed groups for discussions, & our website is a 'Library' of information. We even have our Head Office on Face Book, as a Secret Group. Our dream since we started life has been for a different approach to the way we are treated as patients with multiple chronic conditions. When we go to the doctor one condition at a time gets priority, with 3 being the maximum you can discuss within the allotted time of the appointment. This is no good for us with 'multi-morbidities' because our conditions don't switch off, they are entwined & interlinked so they all need to be examined at the same time with a team of specialists that can then prioritise what needs attention. We are patients 24/7, all the time! Naturally, thinking about all the individual clinics the hospital has for varying types of chronic illness already it triggered the idea for Multidisciplinary Medical Centres where people with multi-morbidity can get that multidisciplinary approach to their healthcare, or patient-centric!? Research somehow could also be incorporated into the design of the Centre with a new school of Medicine that has just opened where I live that runs in line with the Education Centre at the local hospital. I’m a Patient Research Ambassador, as are 2 others, with NIHR & are actively involved in projects. We're also involved with 'Patient Focused Medicines Development' as a patient expert (myself)/patient organisation as volunteers on 'patient engagement' based project using the clinical trial process. I also assisted FindMeCure as a patient adviser for their new FindMePatients platform for pharma to locate patients for clinical trials. My expertise at social media networking led me, & FF, to eyeforpharma & they’ve mentored me into the modern world of pharma, where I have projected the patient voice on panel discussions, round tables on a Steering Committee & Co-Chair for Im-Patient Conference a pharma conference designed by patients that I am a Founding member of, plus a whole new sector of medical healthcare industries to add to our Network. FF has been open to everyone since day one, I realised that we already involve all stakeholders, so I created the hashtags #notjustpatients & #chronicillnessVOICE (newsletter now via Nuzzel news!) All stakeholders need to be patient-centred for patientcentricity to work properly for the patients. It was a great idea of mine to put forward the idea at eyeforpharma Barcelona March 14th, 2018, for attaining patientcentricity by using an 'all-in' approach regarding all stakeholder. It appears to have taken off across many sectors of the medical healthcare industries #notjustpharma! FF is also following this model idea as I can't ask everyone to respect all stakeholders & not do it ourselves The 'Patient centric' viewpoints & the desire from pharma to connect with patients made me realise that the multi-disciplinary approach to healthcare, that we were advocating for married with the ideas that were being projected by Modern Day Pharma. We also advocate for personalised & precision medicine. AI in medicine & a new area that I'm delving into because it's the driving force behind the possibility of these types of medical treatments happening in the future. Making sure the message about lay language is reaching all sectors. I've helped to support AI Med using Social Media to market their events across our network to all stakeholders. I do the same for eyeforpharma & many other organisations across the healthcare industries. Patient & Carer Perspectives are vital during decision making processes & we want to change it so that we are involved All the above of course only tells snippets of our story


Sunderland, ENG


Patient Leader Hero Healthcare Collaborator: Patient

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