Local campaigners put pressure on Government to add motor neurone disease to ‘extremely vulnerable’ list

By Ben Fitzgerald - 7 April 2020

CommunityHealth

Campaigners in Swindon are calling on Secretary of State for Health and Social Care, Matt Hancock to add motor neurone disease (MND) to the Government’s extremely vulnerable persons list to support them through the coronavirus pandemic.

Members of the Swindon and North Wiltshire Group of the MND Association have written to Justin Tomlinson MP and Robert Buckland MP urging them to raise this issue with the Department of Health and Social Care (DHSC) as a matter of urgency. 

MND is a fatal, rapidly progressing disease which affects the nerves in the brain and spinal cord that tell muscles what to do. The disease affects the respiratory system so people living with it are extremely vulnerable to Covid-19.

Following representations made to Matt Hancock, the DHSC indicated people with MND qualify to register under the ‘severe respiratory conditions’ sub-group on the shielding and protecting extremely vulnerable persons from COVID-19 list.  

However, the Association is concerned that people with MND will not know they are eligible unless the disease is explicitly listed.

At the end of last week, the Northern Ireland Chief Medical Officer announced that people with MND would be included on the shielding list in Northern Ireland. We want to see England and Wales brought into line.

Heather Smith, Vice Chair of the group said: “We are extremely concerned MND is not on the extremely vulnerable list. Coronavirus could be particularly dangerous for people with MND and failing to add them to the extremely vulnerable persons list will have serious implications for those living with and affected by this devastating disease. My partner had MND so I have experienced first-hand the devastating impact of the disease, particularly on the respiratory system. The Government needs to amend the list and ensure MND is clearly included to provide clarity to all people living with the condition so they can get the vital help and support they require.”

It is not yet fully clear what support being on the list will entitle a person to. The register is designed to be used by supermarkets to prioritise delivery slots, enabling partners or family to self-isolate if they live with an extremely vulnerable person and is likely to be used to direct further support in future.

To get involved in the campaign to have MND included on the ‘extremely vulnerable persons’ list please visit www.mndassociation.org/covidcampaign

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