Graphic: megaphone with text saying Raise your voice for people with MS # Speak up for MS

Speaking up for our MS community in lockdown

It can be difficult enough to deal with MS without coronavirus and lockdown in the picture too.

We updated this blog on 14 May 2020.

We’re working hard to influence governments and decision-makers across the UK on issues that affect our community during the pandemic.

Access to essentials during lockdown

We know lots of people in our community have faced challenges getting food and essentials. Together with 24 charities, we wrote to the Secretary of State for Environment, Food and Rural Affairs, and UK supermarkets. We called on them to make sure vulnerable people and unpaid carers are given priority access, including for supermarket deliveries.

Since then, we've been working closely with the UK government to get this right, and raising it with governments in Scotland, Wales and Northern Ireland too. We’re pleased that some changes have now been made.

Find out more about access to essentials during lockdown

Who's in the 'vulnerable' category

We know many people with MS have been told by a health professional to self-isolate for 12 weeks (also called shielding), but many weren’t able to register as ‘clinically vulnerable’ to access support.

We and other charities called, emailed and wrote letters to MPs, Ministers and civil servants to highlight the issue in England. And we proactively raised it with decision-makers in Scotland, Wales and Northern Ireland. We're pleased to say the government has changed the registration form in England, so people can self-register for support if they’ve been told to shield.

In Wales, you can ask your GP to add you to the shielding list, and people in Scotland and Northern Ireland can contact the COVID-19 helpline. We’re continuing to talk to government departments in Scotland, Wales and Northern Ireland to make sure everyone gets the support they need.

Treatments and services

Access to treatment and health and care services for people with MS across the UK has been significantly affected by COVID-19. As we move beyond the peak of the pandemic, the NHS is slowly starting to return to normal service, and we want people with neurological conditions to be prioritised. Together with the MS Trust, we submitted evidence to the Health and Social Care Select Committee in Westminster about the impact of delays to treatment. We particularly need to see the full range of DMTs and rehabilitation services delivered safely as soon as possible, and will be working in partnership with others on this.

Together with the Neurological Alliance, we've written to the Minister for Public Health, Sport and Wellbeing in Scotland and the Minister for Health and Social Care in Wales with our concerns about people with MS accessing the treatments and services they need.

Social care and Continuing Healthcare (CHC)

In March, a new Bill became law in the UK and Scottish Parliament. The Coronavirus Act and Coronavirus (Scotland) Act 2020 allows local authorities in England, Scotland and Wales to make changes to the care and support people receive if pressures on social care get too high during the pandemic.

We're monitoring this closely, to make sure essential support is there for people with MS. We've also responded to a Welsh government consultation on supporting people with social care needs.

We know many of our community are very concerned about the lack of PPE in care homes, and for social care workers and unpaid carers delivering care at home. We're calling on the UK government to meet their commitments to provide proper PPE. We're continuing to monitor this situation closely to make sure care providers have enough resources to keep people safe.

We also joined with more than 100 other charities and unions to write to MPs urging action to reduce the financial pressures paid and unpaid carers face.

Benefits and COVID-19

Now more than ever, people with MS desperately need financial support and reassurance for the future.

We’ve written to the Secretary of State calling for urgent action to make sure disabled and unwell people aren’t left without the money they need during this crisis. You can read the full letter on the Disability Benefits Consortium (DBC) website.

We’re pleased to say, there have been some changes already. The UK government has temporarily suspended all face-to-face assessments and is automatically extending all awards for health and disability benefits that were due to end or be reviewed. We expect this measure to last into June.

Now, as part of the DBC, we’re calling on the UK Government to urgently increase ESA and other out of work benefits by £20 a week, to support people during the COVID-19 crisis.

Sign the petition today

Employment

We know many of you are worried about how COVID-19 might affect your employment in the long-term, and what your rights are to say no to returning to work.

We're closely monitoring this situation to make sure any return to work can be done safely.

Read more about work and MS in the coronavirus lockdown

Charity and research funding

We've been asking the UK government for urgent financial support for the charity sector, so we can keep supporting our MS community through the pandemic and for the future.

While the UK government’s £750 million funding package will be welcome news for some charities, it’s still unclear what funds will be available to support people with MS.

We’ve publicly spoken out on this and will keep raising it. We're working with the Association of Medical Research Charities (AMRC) and others to call for charity-funded medical research to also receive the financial support it needs to continue.

The Scottish Government also announced an additional £350 million to support those most affected by the pandemic. We’ll keep working with the Scottish Government and other Scottish funders, to make sure we can support everyone with MS.

We’ll keep campaigning and speaking up for our MS community during the pandemic, to make sure no one with MS has to face it alone.

Are you facing any of these problems during lockdown?

We want to hear from you. If you can, please share your story with us. It helps us campaign together and speak up for our whole community.

Share your story

Never Alone

If you need help now, remember we're here for you. Find out how we can help you online and over the phone

We updated this blog on 14 May 2020.