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Calls for people with motor neurone disease left off coronavirus ‘extremely vulnerable’ list

PUBLISHED: 17:00 08 April 2020 | UPDATED: 13:54 09 April 2020

Sue Heal whose husband died from motor neurone disease is among those campaigning to get the disease added to the coronavirus 'extremely vulnerable' list. Picture: Ian Burt

Sue Heal whose husband died from motor neurone disease is among those campaigning to get the disease added to the coronavirus 'extremely vulnerable' list. Picture: Ian Burt

Ian Burt

Fears that people with motor neurone disease (MND) are at extra risk of coronavirus has seen campaigners call for people with the condition to be added to the government’s ‘extremely vulnerable’ list.

Members of the Norfolk, Norwich and Waveney Branch and the King’s Lynn and West Norfolk Support Group of the MND Association have written to the MPs representing Norfolk urging them to raise this issue with the Secretary of State for Health and Social Care, Matt Hancock, as a matter of urgency.

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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.

A 45-year-old father-of-two, a 62-year-old football photographer and a former councillor, 68, are among the people with the disease who have already died nationally after contracting coronavirus.

Craig Ruston, 45, from Kettering, Northamptonshire, who had motor neurone disease died when his chest infection was diagnosed as Covid-19. Picture: Me and My MNDCraig Ruston, 45, from Kettering, Northamptonshire, who had motor neurone disease died when his chest infection was diagnosed as Covid-19. Picture: Me and My MND

Sue Heal, speaking on behalf of the Norfolk association, said: “We’re 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.”

Following representations made to Matt Hancock, it had been indicated people with MND qualify to register under the ‘severe respiratory conditions’ sub-group on the shielding and protecting extremely vulnerable persons.

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

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.

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Last week the Northern Ireland Chief Medical Officer announced that people with MND would be included on the shielding list, but that is currently not the case in England and Wales.

Health secretary Matt Hancock has said all care home residents showing Covid-19 symptoms will be tested from now on. Picture: Victoria Jones/PA WireHealth secretary Matt Hancock has said all care home residents showing Covid-19 symptoms will be tested from now on. Picture: Victoria Jones/PA Wire

Mrs Heal, whose husband, Jim, died of MND in 2012, said the disease made people susceptible to and at risk from chest infections, so much so that she used to advise people not to visit her husband if they had a cold.

She said: “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.”

Sue Heal with Great Yarmouth MP Brandon Lewis. Campaigners are urging local MPs to support MND being added to the coronavirus 'extremely vulnerable' list. Picture: MND Association NorfolkSue Heal with Great Yarmouth MP Brandon Lewis. Campaigners are urging local MPs to support MND being added to the coronavirus 'extremely vulnerable' list. Picture: MND Association Norfolk

‘If he become infected it would be the end of his life’

A Fakenham woman who is sole carer for her 80-year-old partner who was diagnosed with MND two years ago has explained what life is like under coronavirus lockdown.

She said: “I’m definitely shielding and protecting Brian much more than normal during the current situation and sharing his lockdown. If he becomes infected with Covid-19 it would mean the end of his life - he wouldn’t have the strength to fight the virus because his lungs and immune system are very weak.

“So there are no visits to or from friends or family, which is very hard on Brian: he’s always been a very sociable person and misses them badly. Phone calls are fine, but just not the same as real company. There is absolutely no change of scenery from his home, making his life very tedious.

“If I get infected I will unwittingly pass the virus on to Brian. So I’m having to take very strict precautions as well, apart from what daily exercise I can get. I do feel the responsibility for his health and happiness lying much more heavily on my shoulders at the moment and feel constant guilt that I’m not giving him enough attention or stimulation.

“I’ve registered Brian as an extremely vulnerable person, ticking the space for COPD on the government form, breathlessness being the nearest condition to his, but just one of his many symptoms. There is nowhere on the form to tick for people who have MND, and the fact that it’s not listed as one of the relevant diseases might deter people from registering.

“I do hope the government will add MND to their list to help protect some of the weakest members of our society.”

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