Call For MND Patients To Be On Extremely Vulnerable List

Doddie has has added his voice to those urging the government to include motor neuron disease on the extremely vulnerable persons list so they can receive vital support through the coronavirus pandemic.

 

In the past two weeks more than 3,300 people have responded to a call by the MND Association and emailed their MPs asking them to raise the issue with the Department of Health and Social Care (DHSC) as a matter of urgency.

Now Doddie has shared a video addressed directly to the Secretary of State Matt Hancock. In it he praises the work of the NHS fighting the coronavirus before explaining that he has motor neuron disease which he describes as ‘a terminal illness with horrific short and long term issues’. He goes on to ask Mr Hancock directly for his help saying: “Why is MND not on the very [extremely] vulnerable persons list? Would it be possible for you and your team to….change this…. Please help people with MND stay alive as long as possible.”

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 living in England qualify to register under the ‘severe respiratory conditions’ sub-group on the shielding and protecting extremely vulnerable persons from COVID-19 list. 

But the disease is not explicitly listed and there is concern that many who are eligible to register haven’t as a result.

The MND Association’s Head of Policy and Campaigns Susie Rabin said: “We are grateful to Doddie for picking up the baton on this campaign. Coronavirus could be particularly dangerous for people with MND and failing to add them to the extremely vulnerable persons list could have serious implications.

“Our campaign asking people to email their MP about this has been our most successful ever in terms of numbers which demonstrates the strength of feeling around this subject. With people such Doddie adding their voice we hope to see a positive outcome very soon

It has been suggested by government that for those whose conditions are on the list there will be support available including priority supermarket deliveries and the right of household members to self isolate to protect those most at risk. Further measures are expected to be announced over the coming weeks.

About motor neurone disease (MND): 

  • MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. 
  • It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.  
  • It can leave people locked in a failing body, unable to move, talk and eventually breathe. 
  • Over 80% of people with MND will have communication difficulties, including for some, a complete loss of voice.  
  • It affects people from all communities. 
  • Around 35% of people with MND experience mild cognitive change, in other words, changes in thinking and behaviour. A further 15% of people show signs of frontotemporal dementia which results in more pronounced behavioural change.  
  • It kills a third of people within a year and more than half within two years of diagnosis.  
  • A person’s lifetime risk of developing MND is around 1 in 300. 
  • Six people per day are diagnosed with MND in the UK.  
  • It affects up to 5,000 adults in the UK at any one time.  
  • It kills six people per day in the UK, this is just under 2,200 per year  
  • It has no cure.

 

 

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