129658-simple-red-square-icon-social-media-logos-l

Insight 10: The impact of sharing treatment experiences through social media

(Treatment week 8 of 12)

bullet
* Required

Support networks

Logo_1 britishlviertrust hepatitisctrust lvier4life hepcure-logo

Save Time & Stay Updated Using the HCV Mobile App

Are you looking for the most convenient way to stay updated on the latest medication-specific information when prescribing hepatitis medications? Download our free, easy-to-use HCV mobile app intended specifically for hepatitis C medication prescribers. This app helps providers quickly get medication-specific information based on genotype.

 

 

 

 

 

 

 

Take an active role in your journey to cure

HepCure is an innovative app for patients with Hepatitis C that supports you from treatment start to finish. Learn more about your condition, track your treatment, and connect with your care team. Hep C is a curable condition, and with HepCure, you can reach the finish line

Avella_HCV_App

Leave a reply

 

Copyright statement: This copy is for use online at www.Design-Redefined.co.uk only. Copy may be redistributed in other media and non-commercial publications with consent of the author.

Any republication must acknowledge the author with a link back to www.design-redefined.co.uk. The author may request compensation for republication of any unauthorised content.

Picture1

I am 2/3 through my treatment and while I am slightly tired I am aware that I only have one moth left on therapy. Sharing my insights through social media using #hepCtreat has allowed me to engage and motivate me through this period.

 

I have been overwhelmed by the support of the community & healthcare professionals and this week I would like to share some of their views on what impact social media has on sharing patient’s real life experiences.  

 

 

 

 

 

 

 

 

 

 

 

 

 

“HepCtreat offers a patient's perspective and a patient's journey through hepatitis C treatment and care today, helping to dispel the stigma associated with older treatments, and to encourage people living with hepatitis C to re-engage with care. By linking to research

and practice, it highlights what evidence-based practice is and can be.”

Leon Wylie, Head of Hepatitis Scotland, www.hepatitisscotland.org.uk @hepscotland

 

“Hepatitis C remains a big taboo and it’s so refreshing to see the real experience of someone living through modern treatment.  Grass roots activism is really needed to make newer treatments available to all and hopefully this will really inspire people to push for the best possible care and therapies within their own clinics or form networks to put pressure on those

who provide, and pay for, our medicines and NHS services.”

Tristan Barber, Locum Consultant Physician,

Chelsea and Westminster Hospital NHS Foundation Trust, @tristanjbarber

 

#hepC treatment through the paitients eyes- Fantastic blog

Dr Stuart Flanagan, Website, @Dr_Stuart

 

An inspiring story from a patient’s journey through their hepatitis C treatment and care” @ADRLFoundation

 

“Social media has become a very powerful and immediate channel for patients seeking information on their how to best manage their condition. Who better to advise them than those who have already trodden the same path - other patients who are willing to share their experience? The #hepCtreat project is doing exactly this – providing first-hand information, and in doing so dealing with the fear, misunderstanding and stigma, of treating hepatitis, through digital, bite-sized media that make it easy for other patients to consume and learn. It is helping both patients and health systems tackle hepatitis more efficiently by addressing

key areas of health literacy and filling knowledge gaps.”

Paul Tunnah, CEO, pharmaphorum.Com, @pharmaphorum

 

“One thing that seems distinctly restrictive and obstructive when we address Hep C is the lack of a public and visible community. While those living with Hep C do have strong networks from which to offer and garner support they are often very private and hidden. This is understandable as Hep C is a hugely stigmatised condition, perhaps more so than HIV. But the problem this creates is the lack of a visible and vocal community from which to challenge health care inequalities, access to treatment, pharma's extortionate HCV drug prices, and to raise awareness and encourage more testing, diagnoses, treatments and cures. We will never eradicate HCV

(which we have the tools and potential to do) without all of these things in place first.

So I applaud and support David's fantastic initiative”

Greg Owen Co-founder of iwantPrEPnow.co.uk,  HIV equality campaigner, Blog, @GregOwen

 

"Having accurate and up-to-date information can help people to make decisions about their hepatitis treatment and care. Hearing personal experiences of treatment and care services

can be particularly helpful. It's great that David's been able to blog about his own

personal experience of hepatitis C treatment so far, with his hints and tips

for other people thinking about starting treatment."

Greta Hughson, infohep.org, @infohep

 

"There is a lack of dedicated Hep C community and social support.  It tends to be bundled together with other conditions like HIV, Cancer and Alcohol support groups What is unique about David’s approach to communicating his treatment are the weekly insights which promotes positive self-reliance together with messages and encouragement around preparation, treatment, side effects and general wellbeing. There is already a wealth of information available in support centres and online, what David is doing is adding a human element to the process by including a regular commentary as he undergoes treatment.  In particular, we like his health and wellbeing tracker, an honest description of his state of wellbeing as he undergoes treatment"

Tom Robson, Resources & Communication Coordinator, LASS, Blog, @LASSleics

 

“Exploring a niche of a topic people are uneducated about is such a fantastic idea, so much lack of general knowledge and apparent support so it’s brilliant something is being done

to help those willing to understand to provide a better understanding”

Pharmacy dispenser

 

#hepCtreat is a brilliant project. A simple step by step account of what

is involved in clearing HepC. Honest, clear and hopeful

Paul Felmming, Charity fundraising and communications expert, @MrPJFleming

 

 

Patient views

 

“Side effects ten years were very different to treatment now”

 

“Interesting tips and good info, you are so inspiring, you are helping so many people”

 

“It’s nice I have the knowledge from these insights,

now I can rebuild my life, as a heathy young adult”

 

“I am aware of how ill I have been over the past few years,

considering that my mental health took a nose dive”

 

“Thank you for bravely sharing your experience. Dispelling stigma.

and giving me insight into hepatitis C treatment”

 

“I am very lucky, my viral load was undebatable within two weeks of treatment,

I am aware that I am one of the few who have access to treatment on the NHS”

 

 

Thank you to everyone for sharing their views.

 

social_media_01 View my health & well-being tracker NOhep-Next-Greatest-Achievement-New-Normal-1