Neurologist leads in developing patient-facing app for MS

In the Torbay area, people with MS are being offered access to a new self-management tool, the MSConnect app.

Developed by consultant neurologist Dr Agne Straukiene, and supported by her local Trust and her colleagues in the small MS service there, the app combines virtual appointments, video classes, written information and support, and signposting. It aims to provide a source of trustworthy and accessible information so that people with MS feel informed, supported, and in control of their lives.

The app includes the 'Attend Anywhere' virtual consultation platform so that anyone, anywhere in the world, can attend their virtual consultation. The exercise videos included were developed by the MS services' neuro-physiotherapist, whilst the 'Frequently Asked Questions' section was developed by MS specialist nurse Jenny Pye. Debbie Gleeson, the new MS specialist nurse now in post at Torbay hospital, said,

'We hear a lot of the same sorts of questions in clinics', she said, 'so it is useful to put responses to those common questions on the app.'

The hope is that this will mean people can get access to the answers they need when they need them, rather than having to wait until their next appointment.

Podcasts where Agne shares her thoughts on topical issues such as shielding during the coronavirus pandemic are designed to help people feel informed, whilst the mindfulness and guided meditations can be supportive both for people with MS and their families too.

Valerie Bailey is a member of the Patient Participation group and lives with MS. She tells her story on a video summary about MSConnect, saying

'I was rudderless to start with… You get into the car after an appointment and realise all the questions you didn't ask... I've got everything to do with my care here on this app.'

Agne is a strong advocate of people's need to feel in control and able to steer their own lives and manage their MS in the way that is best for them. By giving people information and access to ideas, starting points, and supportive videos across a whole raft of topics.

Agne's passion for encouraging people with MS to take an active role in the treatment and management of their MS is equally met with a passion to promote overall healthy living. As lead of the healthy lifestyle workstream within the national programme 'Raising the Bar', Agne and her team are developing resources and tools for healthcare professionals. By equipping professionals to better encourage self-management in those they support, as well as providing resources for them to share with their patients, Agne hopes to make lifestyle a core element of MS disease management.

The MSConnect app brings together these goals so that people with MS can feel confident in accessing the healthcare they need and in living their best lives.

Valerie Bailey summaries the app's purpose succinctly:

'This app encourages you to be resilient, it gives you the tools to do something, to do some of the exercises and notice a change in yourself, and think 'I can do this, I can cope with this.'

Watch a video interview with Agne, her service's specialist nurse, Deborah Gleeson and Valerie Bailey, who has MS and uses the app, here.

To download the app, search for ‘Connect Plus’ in your app store and then select MS.

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MS Academy was established five years ago and in that time has accomplished a huge amount. The six different levels of specialist MS training are dedicated to case-based learning and practical application of cutting edge research. Home to national programme Raising the Bar and the fantastic workstream content it is producing, this is an exciting Academy to belong to.