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Coronavirus and shielding: raising our voice

Matija Tomanovic

Since the start of lockdown, many people with MS have been shielding, which has meant limiting time outside and contact with others.

Current shielding advice is due to end in all four nations of the UK in August. So you may be feeling uncertain or anxious about what it means for you and your family, whether you've chosen to shield or been advised to.

It’s now more important than ever that the voices of people with MS who've been shielding are heard by decision makers. We’ve been reflecting on how we’ve been campaigning since the pandemic began.

Right to support for people with MS

At the start of the pandemic, many people with MS were told by a heath professional they should shield. But they were not able to register as ‘clinically extremely vulnerable’ to access support.

We alerted politicians to the fact that people with MS in England who'd been told to self-isolate weren't able to get support they needed. And we quickly raised this matter with decision-makers in Scotland, Wales and Northern Ireland.

As a result, changes were made so people across the UK can more easily request support (or self-register for support where that system is in place).

Better support and advice on COVID-19 and MS

In June, UK governments eased lockdown measures for the general public. But many people with MS told us the burden on those being asked to stay inside was becoming ever greater. We know many in our community felt confused, frustrated and forgotten.

So we helped bring together 48 charities to write to the relevant secretaries of state in each nation, asking them to:

  • set out a clear plan for the future of shielding
  • publish the scientific evidence behind it
  • provide better advice and support for people vulnerable to COVID-19.

We highlighted these issues and the experiences of people affected by MS in widespread national media coverage. This included appearing in over 1000 online and print publications and being featured on BBC News 24.

Shortly after this, the Government announced plans to ease shielding in England and started talking to patient groups including us about how it could better support people.

Governments in Scotland, Wales and Northern Ireland nations have also announced changes, and we’re continuing our conversations with decision-makers across the UK.

Employment and shielding

Now, with shielding advice due to change again in August, people in employment that are vulnerable to COVID-19 may feel uncertain about going back into the workplace. No one should have to choose between their job and their health.

We’re campaigning with Age UK, nine other charities, and the Trade Union Congress (TUC), for the UK government to extend the furlough scheme beyond August - both for workers who are shielding and those who cannot safely return to the workplace.

Latest information on coronavirus and MS

We won’t stop there. Over the coming weeks and months, we’ll continue to work with people with MS, charity partners, governments and healthcare professionals to make sure that as guidance changes, we’re not forgotten.

We’ve put together a statement from our medical advisors to address the uncertainty around government announcements. And we’ll continue to update our information and guidance from our MS medical advisors, to help you make decisions that are right for you as the situation changes.

Help our campaign

Are you living with MS and shielding? By sharing your experiences with us, you can help us campaign. Share your story by emailing [email protected].