We called on the government to include those living with MND in their group of 'extremely vulnerable' people to shield from COVID19.

The government created a list of extremely vulnerable persons designed to better shield and protect those with certain conditions during the COVID-19 outbreak. Those on the list were granted certain protective measures such as priority access to supermarket deliveries.

This list did not include people living with MND. As MND is a progressive and terminal condition which frequently impacts the respiratory system, we believed that MND patients are extremely vulnerable to the COVID-19 virus and should have been included on this list.

We wanted to thank each and every one of our supporters for their contribution to the #GetMNDonTheList campaign. Over the last few months, we have seen considerable media coverage on the issue, over 5200 supporters, over 120 MPs, nearly 40 clinicians and several high-profile celebrities have joined together to help persuade the Government to #GetMNDonTheList.  We were truly impressed with the level of support and activity in a short time.

Following weeks of tireless campaigning and extensive engagement with the office of the deputy Chief Medical Officer (CMO), we were deeply disappointed to announce that the Government did not change its position and would not add MND to the list of conditions clinically extremely vulnerable to COVID-19.

The Government's position was that inclusion on the extremely vulnerable list should be limited to people with MND who have developed respiratory or bulbar symptoms (we estimated this is around 70% of people living with MND). In correspondence from the Department of Health and Social Care (DHSC), Deputy Chief Medical Officer Dr Jenny Harries said that

"patients with MND should continue to be recommended by GPs/specialists for shielding on a case by case basis, to reflect the varying degrees of severity of Motor Neurone Disease."

Thanks to our campaigners, the Northern Ireland Executive took the decision to add MND to their 'extremely vulnerable' persons lists - a fantastic achievement. The campaign also helped raise the profile of MND with the general public and politicians - it was praised by several MPs and won us new supporters. This was definitely the most engaged campaign the Association has run.

The clinically extremely vulnerable list will be discontinued from August 1st (in England and Northern Ireland) and August 16th (in Wales). From those dates onwards, people will no longer be advised by their Government to shield, and it will no longer be possible to register as clinically extremely vulnerable.

Although lockdown is starting to ease and shielding is ending, COVID-19 is still present. This means there is still a need for social distancing and good hygiene.

When shielding ends, everyone will be expected to follow the same government advice on social distancing. Guidance for England can be found in Staying alert and safe (social distancing) and their summary of what the general public can and cannot do. There is separate advice for Northern Ireland and for Wales.

It is vital that people with MND are able to stay safe and are protected from COVID-19. We can all help make that happen.

Our campaigning work on COVID-19 will continue however. We are still working hard across other policy areas including health, social care, welfare, carers and research to ensure that the response to the pandemic is working for people living with MND.

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