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Online community to support people diagnosed with multiple sclerosis

A new project is using social media to bring patients who have recently been diagnosed with multiple sclerosis (MS) together with clinicians and other patients who can offer support.

Patients across Greater Manchester began receiving invitations to join the Greater Manchester Multiple Sclerosis Information Network (GMMSIN) Facebook group in February, with around 60 people now signed up. They can access information and advice from other newly diagnosed patients and volunteers who help moderate the conversations. The groups also include healthcare professionals, who provide updates and answer queries about MS treatment as well as making sure that the information shared is accurate and timely.

The project, which is funded by the MS Society, is led by the University of Salford in collaboration with the neurology team at Northern Care Alliance NHS Foundation Trust (NCA). It follows the previous success of the University’s innovative Facemums project, which saw similar online groups provide midwife-led support for pregnant women as they prepared to give birth and for up to six weeks after their babies were born.

It is being evaluated through a linked research study, with participants sharing their feedback  through questionnaires.

Professor Alison Brettle, in the University’s School of Health and Society, is leading the project. She said: “We hope that this will provide a really timely and responsive service for patients who are diagnosed with MS; helping them get relevant and up to date information quickly, using technology that they are already familiar with and comfortable using.

“We’ve already seen though previous research projects we’ve been involved in here at Salford that projects such as this have the potential to transform how we can offer support services – in the short time we’ve been live we’ve already seen the impact following discussion in the media around a potential new drug for treating MS. We were able to make a video with one of our consultants explaining the detail of this and upload it to the group, getting that information to participants really quickly and easily.”

Dr David Rog, Consultant Neurologist at Manchester Centre for Clinical Neurosciences (MCCN) and Chief Clinical Information Officer at NCA said: “I’m delighted to be working with the University of Salford, supported by the MS Society, to reimagine how we manage a growing population of people with MS as effectively and efficiently as possible in today’s NHS.

“GMSSIN enables the MS team to reach many more people with MS with timely information and answers about common questions, in a format that suits them. For example, we know some people with MS prefer short, succinct spoken messages rather than pages of text. They like to see and connect with their MS team members more than traditional clinic-delivered care allows  and to share experiences with those facing similar challenges.

“There will be an increased emphasis on holistically preserving brain health in the next decade, through identification of personal risk factors, early treatment, adopting positive behaviours and lifestyles and data integration and this project could prove to be a key component of delivering 21st century quality care.”


Anyone who is interested in finding out more about the project or joining the study can do so here – Centre for Applied Health Research.

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