A pioneering initiative by Shift.ms, an online charity for people with multiple sclerosis (MS), has been hailed by a leading NHS neurologist as a ‘shining example’ of how every-day smartphone technology could help to bridge the gap in healthcare information for hundreds of thousands of people living with long term medical conditions.
With the NHS under pressure and less time available with specialists, there is an increasing expectation on patients with long term medical conditions, such as MS, to self-care.
More patients are going online seeking advice, support and the latest research news. But there remains a desperate lack of trusted information available direct from healthcare professionals for patients which is easy to access and understand.
MS Reporters empowers people with MS (MSers) by enabling them to access the latest healthcare information and expert opinion from some of the UK’s leading MS specialists and researchers, regardless of where they live.
As a result MSers are better equipped to self-manage their condition and more aware of emerging new treatments which could benefit them. They are also less reliant on GPs between specialist appointments – which is good news for patients and for shrinking NHS budgets.
Mother of two Polly Mehta, age 30, is an MS citizen reporter. She explains how the initiative is breaking down barriers: “You go to your appointments with your neurologist and you come out thinking I wish I’d asked that, wish I’d said that and MS Reporters gives people a chance to get the information that is going to be helpful to them directly from the people who know. I go to research days and a lot of information goes right over your head. Getting the chance to talk to a neurologist and make them break it down a bit is important. MS Reporters is breaking down that barrier.”
George Pepper, co-founder of Shift.ms, who has MS, knows the ideal situation would be for patients to have more time with specialists. Seeing as this is not possible, he is determined to do what he can to empower patients. “Many people with MS get to spend just 15 minutes a year with their consultant, if they’re lucky. Ideally MSers would have more frequent time with specialists, 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.”
As well as giving patients access to knowledge, MS Reporters is changing the way patients communicate with doctors, as Mr Pepper explains: “Engagement with patient communities is typically top-down, but MS Reporters allows MSers to see patients from their own community speaking with leading experts, helping to break down barriers. The videos allow MSers from all over the world to have their questions answered and to benefit from the knowledge and expertise of leading professionals, no matter where they live. It can also prevent them from missing out on new treatments which could transform their lives for the better.”
How MS Reporters works
Shift.ms train volunteers with MS to become citizen journalists, known as ‘MS Reporters’ and matches them with leading MS consultants and researchers at specialist neurology/MS centres across the UK. Using ordinary smartphones, MS Reporters interview these experts, asking questions submitted by fellow members of the Shift.ms online community. The interviews are edited and added to a video library of expert knowledge which is free and accessible for people with MS worldwide.
MS Reporters impact so far
Shift.ms has so far trained 35 citizen reporters and teamed them with leading MS experts from specialist MS centres in London, Edinburgh, Leeds, Salford, Liverpool and Dublin. Reporters can be trained remotely, making the scheme accessible to MSers regardless of where they live or how mobile they are because of their condition.
There are now over 100 MS Reporter videos with a regular stream of new content being released monthly.
Vraj, aged 28, has been part of the Shift.ms online community since he has diagnosed two years ago. He has been benefiting from the videos created by MS Reporters. “The MS Reporters videos are brilliant – short, snappy and the hot topics that MSers want. I only get to see my neurologist about once a year and the questions I ask at my appointment depend on what symptoms I’m experiencing at that time. But MS is a changeable condition, so between these appointments if I am relapsing or getting a symptom or side effect, I can go to Shift.ms and get an expert view straight away, whereas before I would have had to go to my GP. It’s basically given me an extra layer of support.”
The pilot launch of MS Reporters two years ago coincided with the release of the NHS’s 5 Year Forward View which outlined the need to find new ways to help patients with long term medical conditions to self-care. The report highlighted that long term health conditions, rather than illnesses susceptible to a one-off cure, take 70% of the health service budget.
MS Reporters has been well received by both the MS community and healthcare professionals, and the model has already been successfully adopted by two other charities – Shine Cancer Support and Join Dementia Research – demonstrating its potential to help hundreds of thousands of patients with long term medical conditions in future.
Prof Alan Thompson, Dean of the Faculty of Brain Sciences at University College London (UCL) and one of the UK’s leading MS experts, has been involved with MS Reporters from the start. He says: “MS Reporters is a shining example of how every day technology can be successfully used to empower and benefit patients with long term medical conditions. This kind of innovation could revolutionise the level and quality of information available to many thousands of patients, leading to better health and wellbeing. It could also go a long way to relieve the pressure on the NHS by enabling a greater degree of self-management, reducing time with GPs between specialist appointments.”
Join Shift.ms as a volunteer: In 2015/16, 209 people volunteered their time to help Shift.ms to thrive. They worked behind the scenes in a number of roles including keeping the website safe and supportive, creating social media content, representing the organisation at events, fundraising and spreading the word.