The government’s failure to put motor neurone disease automatically onto the extremely vulnerable persons list in the coronavirus crisis has been condemned as “cruel.”
Members of the East Dorset and New Forest branch of the MND Association say the refusal to act has left sufferers feeling abandoned.
MND is a fatal, rapidly progressing and terminal condition 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.
Nationally the MNDA has launched the GetMNDonTheList campaign.
Melanie Broomfield of New Milton, from the local MNDA branch whose husband Danny died from MND in 2006 said: “We’re very concerned MND is not on the extremely vulnerable list.
“Coronavirus could be particularly dangerous for people with the condition and failing to add them to the extremely vulnerable persons list will have serious implications for those living with this devastating disease.
“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.”
Respiratory problems are a major issue in the final stages of the disease so contracting the coronavirus would probably be fatal.
Mum and company director Annie Allen, 54, of Poole has MND and told the Echo by text message: “Life is hard enough for people with MND without Covid-19 thrown in too.
“The government’s position is cruel but no surprise. This terrible condition is often overlooked and grossly underfunded. It is also not that rare.
“Health Secretary, Matt Hancock, defended the oversight by saying that people with MND may find the social shielding too extreme. We would like to make that choice for ourselves.
“I registered myself on the government site and have finally after four weeks been confirmed by NHS as extremely vulnerable.
“But thousands of people with MND are missing out on vital support.”
Mrs Allen said the government should do all it can to help MND sufferers have as much time as possible left with their loved ones.
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.
However, the Association is concerned that people with MND will not know they are eligible unless the disease is explicitly listed.
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 visit www.mndassociation.org/covidcampaign
Also see www.mndedorsetandnforest.org.uk
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