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Get MND on the List

The UK wide campaign called for the UK and Scottish Governments to automatically include all people with MND on the ‘extremely vulnerable’ list for Covid-19.

Our Get MND on the List campaign called for the Scottish Government to include all people with MND on the NHS shielding list of those ‘extremely vulnerable’ to Covid-19.

In response to the Covid 19 pandemic, the government set up a list of those who were considered to be ‘extremely vulnerable’ to the virus and should be ‘shielded’ at home for their own protection. 

To enable this, people on the list are prioritised for online shopping, prescription deliveries and PPE for their carers. However, people with MND were only automatically included on the list if they currently had problems such as breathing and swallowing difficulties.

We found that many people with MND who wanted to shield but hadn’t been added to the list, meaning they were unable to access the services set up, such as online shopping, to help them do so.

What we did

To support all people with MND to get access to these services, MND Scotland joined the UK wide campaign #GetMNDonTheList. The MND Association and MND Scotland lobbied the UK and Scottish Governments to automatically include all people with MND on the ‘extremely vulnerable’ list.

Rugby legend Doddie Weir, who is living with the disease, showed his support for the campaign with a powerful video message for UK Health Secretary, Matt Hancock. We wrote to Jeanne Freeman, the Scottish Cabinet Secretary for Health and Sport, on several occasions and many of our followers tweeted their support for the campaign. Thank you to everyone who got involved.

Despite our best efforts, we are disappointed to report that Northern Ireland’s government was the only one of the four nations to agree to add all people with MND to the ‘extremely vulnerable’ list.

What now?

If you have received a shielding letter, support through the shielding service will continue. This includes special delivery boxes, priority slots for online supermarket deliveries and home delivery services from local pharmacies.

On 8th June, the First Minister, Nicola Sturgeon, announced that the initial 12 week shielding period would be extended to the 31st July. The only change to the guidance for people shielding is that they will be permitted to go outside from 18th June for exercise but must maintain a social distance from anyone else. Should there be any further changes, the Scottish Government will write to you to keep you informed. The Scottish Government also published advice for those with a neurological condition

If you want to be shielded but haven’t been, you can ask your GP or MND nurse to add you to the list. If this isn’t possible, and you need help with getting essentials such as food and medication, you can contact the Scottish Government’s National Helpline on 0800 111 4000 which will link you up with community support. 

If you are having problems getting added to the ‘extremely vulnerable’ / shielded list; accessing food, medicine or PPE; or, any other type of support you might need, please do let us know. You can call us 0141 332 3903 or email us at policy@mndscotland.org.uk.

We will continue to monitor any changes to the shielding guidance between now and the 31st July and continue to work closely with the Scottish Government to ensure that people with MND, and their carers, are given the support they need to shield, if they choose to do so.

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“Thank you to everyone who showed their support for this campaign. We will continue to monitor the situation and work to ensure everyone with MND receives the support they need.”

Susan Webster | Head of Policy and Campaigns

Susan Webster | Head of Policy and Campaigns