Thank you for taking part in the #GetMNDonTheList campaign

We want to thank each and every one of our supporters for their contribution to the #GetMNDonTheList campaign. Over the last few weeks, we have seen considerable media coverage on the issue, over 5200 supporters, over 120 MPs, nearly 40 clinicians and several high-profile celebrities have joined together to help persuade the Government to #GetMNDonTheList.  We were truly impressed with the level of support and activity in a short time.

Following weeks of tireless campaigning and extensive engagement with the office of the deputy Chief Medical Officer (CMO), we are deeply disappointed to announce that the Government has not changed its position and will not be adding MND to the list of conditions clinically extremely vulnerable to COVID-19.

The Government’s position is that inclusion on the extremely vulnerable list should be limited to people with MND who have developed respiratory or bulbar symptoms (we estimated this is around 70% of people living with MND). In correspondence from the Department of Health and Social Care (DHSC), Deputy Chief Medical Officer Dr Jenny Harries said that

“patients with MND should continue to be recommended by GPs/specialists for shielding on a case by case basis, to reflect the varying degrees of severity of Motor Neurone Disease.”

Thanks to our campaigners, the Northern Ireland Executive took the decision to add MND to their ‘extremely vulnerable’ persons lists – a fantastic achievement. The campaign has also helped raise the profile of MND with the general public and politicians – it was praised by several MPs and won us new supporters. This was definitely the most engaged campaign the Association has run.

Despite the Government’s position, we believe it is essential to continue to raise awareness and ensure all people with MND are registered as extremely vulnerable and get access to the support they need during the COVID-19 outbreak.

Here’s what we are doing to ensure that happens:

  • We are working with our Care Centres and the Association of British Neurologists to ensure clinicians register their patients with MND as extremely vulnerable
  • We know many people already have registered and we are encouraging people not registered with MND in England to self-register as extremely vulnerable via the online registration process. Although this process is not available to people with MND in Wales, they can contact their GP to be registered
  • We will work with the DHSC and the CMO’s office to engage with the Royal College of General Practitioners to encourage GPs to register their patients with MND.
  • We are working with the Department for Environment, Food and Rural Affairs and the DHSC regarding the support available to the wider vulnerable group to ensure that anyone who is not registered as extremely vulnerable can still access the help they need, such as supermarket delivery slots.
  • We are working directly with supermarkets to secure delivery slots for people living with MND
  • We will ensure people with MND and their carers are made aware of the NHS volunteer responders programme and are registered
  • Through our staff and volunteers, we have been contacting all people with MND we have details for to ensure that they have the support in place that they need – to date, over 3,000 phone calls have been made

It is vital that people with MND are able to stay safe and are protected from COVID-19. We can all help make that happen. Please share the advice on how to register as extremely vulnerable with people living with MND that you know.

Our campaigning work on COVID-19 will continue however. We are still working hard across other policy areas including health, social care, welfare, carers and research to ensure that the response to the pandemic is working for people living with MND.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262