For immediate release: Thursday 29th September 2016
MS Reporters ‘shining example’ of how everyday smartphone technology could empower thousands with long term medical conditions
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 (www.shift.ms/msreporters) 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 – good for patients and for shrinking NHS budgets.
How MS Reporters works
- Shift.ms trains 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.
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. About 15 million people in the UK have a long term condition*.
MS Reporters has been well received by both the MS community and healthcare professionals. The MS Reporter 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.
Thanks to the backing of the Wellcome Trust and Comic Relief, MS Reporters will be scaled up over the coming months and the model shared with other charities and organisations within the medical world and beyond.
George Pepper, co-founder of Shift.ms, who has MS, says: “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.”
“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.”
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 (www.shift.ms/msreporters) with a regular stream of new content being released monthly.
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.”
Media contact: Kate Sidwell
[email protected] mob: 07910 154673 or Twitter @katesidwell1
*Accompanying video is available on request.
Notes to editors:
*Source: Department of Health analysis of General Household Survey 2006
Case studies: We have patient case studies and/or consultants available for media interviews in London, Scotland, Leeds & Manchester.
Polly is an MS Reporter living in London
Mother of two Polly Mehta, age 30, is an MS citizen reporter. She says: “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.”
Vraj is a Shift.ms user
Vraj, aged 28, has been part of the Shift.ms online community since he has diagnosed two years ago. He says: “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.”
Shift.ms is an online charity for people with MS. It began as a social network for people with MS in 2009 and now has over 10,000 members and receives 25,000 visitors per month.
Shift.ms aims to create a positive, enabling community for MSers which empowers them to acknowledge their MS, rethink how to achieve their ambitions and get on with their lives.
Facts about Multiple Sclerosis
- MS is a condition of the central nervous system.
- There are around 100,000 people in the UK living with MS and 2.3 million affected worldwide.
- Most people are diagnosed between the ages of 20 and 40.
- Three times as many women have MS compared to men.
- There are several different types of MS: Relapsing Remitting, Primary Progressive and Secondary Progressive.
- No MSer experiences the exact same symptoms. Symptoms can include walking difficulties, eye sight problems and fatigue to name but a few.
- No one knows the exact cause of MS and there is no cure, although available treatments have greatly increased over recent years.