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Sharing your stories of work and MS at the UK Parliament

Hannah Maunder

This year, the All-Party Parliamentary Group (APPG) on MS is focusing on people’s experiences of employment. We know the pandemic has had a big impact on the world of work, from furlough and redundancies to the shift to remote working.

What did people with MS tell politicians?

People shared their experience of the pandemic and how it impacted their physical and emotional health.

One person shared how they’d got out of the habit of holding on to use the toilet. They’ve been able to access their toilet very quickly while at home for the duration of the pandemic. Now they feel anxious about being out in the public, where toilets are not as accessible, and having to wait longer to get to a toilet.

Other contributors to the call shared their feelings of isolation, socially and professionally. This was because they were shielding while their colleagues were in workplaces. They feel they’ve lost confidence in returning to their workplaces over the coming months.

Benefits and drawbacks of the virtual world

We also talked about how working virtually had supported some people with MS to participate more fully in work. It’s helped some people manage their fatigue better. And some have found that they’ve only needed to take half an hour out of their working day to attend an appointment. Before, it might have taken them a full day round trip to a hospital for a twenty minute appointment.

There was an interesting discussion about the use of virtual health appointments and what the future balance should be. Some people felt they made the relationship between patient and healthcare professional more equal. Not to mention saving the stress of hospital car parking!

Others felt they were missing out on information and updates that you could only get from seeing each other face to face. Some people said that physio appointments didn’t quite work when you’re lying on the floor doing an exercise - and trying to look at a screen!

Helen’s story

Helen, who lives with MS, took part in the APPG’s call. She said: 

'It is so important that our decision makers in the country understand the impact of the pandemic on people with MS and their work and careers. I wanted to get involved as I can see the debate from two different sides, as an HR advisor and as a person with MS.  I feel strongly about more people, both employers and individuals, knowing about Access to Work, and how it can support people with MS in work. It desperately needs more publicity'. 

What are we doing next?

We’re gathering people’s experiences of employment and MS, and we’ll add the points and ideas raised at the meeting to our collection.

A group of people with MS are helping shape the APPG’s focus as they explore this topic. Together with them, using the stories we gather, we’ll be creating some recommendations for the UK Government.

We’ll continue to raise these recommendations at every opportunity and we’d love your support.

Tell us your experiences of employment

Have you had similar experiences to the ones discussed in the APPG’s meeting? Or do you have a different perspective you’d like to share? What is your opinion on the future of virtual healthcare appointments?

We know that MS affects people in different ways. We want to hear from as many people as possible about their experiences of employment as someone living with MS. This will help us make sure the recommendations we create are as representative as they can be.

If you have anything you’d like to share, no matter how long or short, please email [email protected] – we’d love to hear from you.