MS patients get reporter training for YouTube project

 

MS reporters training image

MS patients get reporter training as part of film project

Patients with multiple sclerosis at The Walton Centre are taking part in a social media project which is training them how to interview experts.

It is all part of a wider ‘MS Reporters’ project which is assigning a ‘buddy’ or assistant to a patient with MS and giving them guidance on how to put questions to different professionals.

The aim is to produce a series of short films on the video website YouTube, showing experts being interviewed by the MS Reporters and providing information which can benefit patients and carers worldwide.

The Wellcome Trust funded the project which is being led by MS charity Shift.ms. It was first piloted in London before being carried out in other areas.

Karen Myciunka, a businesswoman from Warrington, who was diagnosed with primary progressive MS 13 years ago, is one of six MS patients taking part.

She said: “The person with MS acts as a Reporter and they ask questions to Experts.

“During the training day we interviewed Professor Carolyn Young (a consultant neurologist leading on the project from The Walton Centre), but the aim is to get a range of experts who can answer the questions we have.

“We have six MS Reporters aged between 20 and 50 something. Some have secondary progressive MS, some have primary, some relapsing/ remitting.

“Every MS reporter has a buddy to basically help with the filming. They set up the camera, make sure everything is in focus, and look after timing. We received training in how to ask questions and how to make sure we weren’t asking ‘closed questions’ (those that could be answered with a ‘yes’ or ‘no’) to make the answer more detailed and more interesting.”

The first interviews with the experts will take place in the next two to three months.

MrsMyciunka thinks there is real value in doing the recordings.

She said it presents an opportunity for patients to ask questions of professionals such as drug researchers who they wouldn’t necessarily encounter as part of their ongoing care.

She added: “These are questions that you might not necessarily ask in clinic. For example ‘why is there so little research on primary progressive MS?’ It may be that you choose to put your  question to an expert in another field of care, such as pain management.

“It’s opening up the whole discussion around MS and looking from a different perspective and hopefully done in an environment where nobody feels pressured. It’s also using modern media that has the potential of reaching communities across the world.”

Professor Carolyn Young, consultant neurologist at The Walton Centre, added: “We wanted to get involved because we believe in giving patients a voice and patients being partners in their own care and research.

“We have six MS Reporters, who are all patients of The Walton Centre, and six MS buddies. Some of the buddies are junior doctors, researchers, there’s a statistician, there’s quite a range of people.”

“We would like to create a little library of interviews that people can access in the future. Clearly there is a lot of written information about MS and people can do Google searches but sometimes people like to see a film of a discussion between two people about a topic rather than the written word; they like to see a dialogue, it seems more dynamic. And I think it is more real to them if the person asking the question is somebody who actually has the condition.”

Project manager Anindita Ghosh, from Shift.ms, said they were “delighted” to be working with The Walton Centre.

She said: "We are thrilled to be partnering with the world renowned team at the Walton Centre.

“The MS Reporters project aims to create a patient-led library of expert knowledge captured in short videos.

“The www.shift.ms community of over 7,000 people with MS are invited to submit their questions. We train people with MS to have interactions with experts beyond being patients but as representatives of the MS community sharing their unique experience living with the condition.

“These videos are shared online, creating an opportunity to create conversations between the MS and expert communities. We are excited about the impact the MS Reporters project could have." 

Pic caption: MS Reporters receive their training during a session held at The Walton Centre

Further information: Helen Hunt on 0151 529 8964 or Caroline Kenyon on 07843 243913

Notes to editors:

Multiple sclerosis (MS) is a neurological condition which affects around 100,000 people in the UK. There are different types including relapsing remitting, secondary progressive, primary progressive, and benign MS. The condition is complex and has many symptoms including fatigue, vision problems and difficulty walking but MS is different for everyone.

The Walton Centre NHS Foundation Trust is the only hospital trust in the UK specialising in neurology, neurosurgery and pain services. Although the majority of patients come from Merseyside, Cheshire, North Wales, Lancashire and the Isle of Man, for some specialist treatments of complex disorders we see patients from all parts of the country, referred by their GPs or other neurologists, neurosurgeons and pain clinicians.

For more information please visit: http://www.thewaltoncentre.nhs.uk/

The Walton Centre NHS Foundation Trust

Lower Lane

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Liverpool L9 7LJ

0151 525 3611