Living with a long term health condition, in my case multiple sclerosis (MS), means a lifetime of dealing with neurologists, nurses, physiotherapists... the list goes on. If I had to make an appointment for every question I have had in the past 12 years, I wouldn't have much time for anything else! I have had to find other sources to help me learn to manage my condition.
The first place I looked was online. In fact it's how Shift.ms came about because so little existed online for recently diagnosed people with MS (MSers). Finding others like me going through similar issues meant I could connect to a whole world of people without leaving the house. A lifeline when you are recently diagnosed and coming to terms with living with a long term condition.
People with long term conditions need information and support. Time with clinicians is becoming increasingly limited with more and more of us turning to accessing health information online. But typing your symptoms into Google can bring a whole host of problems, there's links to miracle cures and reams of written medical jargon to sift through, without knowing what to trust and what should be consigned to clickbait madness.
We have seen more and more people visiting the Shift.ms forum with questions that were more appropriate for healthcare professionals to respond to, than those living with MS. Fast forward. Following funding from Wellcome Trust, MS Reporters was born. MS Reporters is a public engagement initiative that teams up people with MS with healthcare professionals, responding to questions submitted by the community.
The process begins by Shift.ms training the MSers to become citizen reporters. They are then matched with MS specialists and researchers at MS centres across the UK. Using a smartphone, MS Reporters interview these experts, capturing the answers on video using their device. Each interview is added to an online video library of expert knowledge which is free and accessible to our community worldwide.
MS Reporters features 140 MS Reporter interviews, with questions ranging from managing specific symptoms to understanding the latest treatments. There's no question too small for the group of healthcare experts. The MS Reporter interviews have already received over 340,000 views.
It has become a common headline in the UK, the NHS is stretched and demand for services has never been higher. Many people with MS get to spend just 15 minutes a year with their consultant, if they're lucky. Specialist MS nursing teams, which can be a daily lifeline to MSers, are dwindling. Some areas of the UK that have thousands of MS patients only being served by one MS nurse. Ideally people with long term conditions would have more time with healthcare professionals, however this is the reality we live in and MS Reporters aims to bridge this gap, empowering and informing the patient community by creating a dialogue with leading experts.
Knowledge is power. The more information MSers have about their condition, the better equipped they are to manage their MS. Whether it's dealing with a new symptom or understanding what treatments are available.
This is just the beginning. We have run successful pilots with cancer and dementia charities to bring patient power to their communities. We believe MS Reporters is a model that could benefit hundreds of thousands with long term conditions, and we will be rolling out to further communities in the years ahead.
www.shift.ms was launched in 2009 and is now a thriving peer support community of over 25,000 monthly users from all over the world.
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