How to get registered as extremely vulnerable

Get MND on the List

If you feel you should be shielding from COVID-19, see the second heading below on How to get registered as extremely clinically vulnerable.

Find out more about COVID-19 vaccinations on our web page about immunisation in the UK.

January 2021 restrictions update

For the latest guidance on COVID-19 restrictions, support bubbles and different approaches in each nation, see government information for EnglandNorthern Ireland or Wales.  There is an ongoing need for social distancing and good hygiene.

Please note that Government guidance is updated frequently. These changes can happen in any of the three nations or within specific local areas. For example, we are in a national lockdown at the moment, which is expected to continue until at least mid-February.

You may be worried if you have a family or unpaid carer who needs to travel to provide you with support. If your area is in a temporary lockdown due to infection rates, travel should be for essential purposes only. However, a caring role would be an accepted reason. If your carer needs to travel between countries in the UK to assist you, it is advisable for them to carry some form of proof, such as a letter from a doctor, to prove their role.

How to get registered as clinically extremely vulnerable

See below for links to government guidance if you are already considered extremely vulnerable to COVID-19.

If you live in England

If you live in Northern Ireland

If you live in Wales

In Northern Ireland: the decision has been made that people with MND are automatically identified as clinically extremely vulnerable. If you have been diagnosed with MND, you should have received a letter to confirm this.

In England and Wales: government policy is that people living with MND are not automatically identified as clinically extremely vulnerable, but you can still be registered if you meet the conditions.

As people with severe respiratory problems qualify as clinically extremely vulnerable, this includes people with MND who have respiratory or bulbar symptoms.

If you have MND and think you may need to be registered as clinically extremely vulnerable, contact your GP for guidance. They can add you to their list of those registered if you meet the conditions as extremely vulnerable to COVID-19.

If you have already been identified as clinically extremely vulnerable, you should have received a letter from the NHS to confirm this has happened. Clinicians can still add you to their list for this group, especially for high risk areas. We are encouraging clinicians to add anyone living with MND who is considered clinically extremely vulnerable to the list.

Being registered may also support inclusion in an earlier wave for COVID-19 vaccination. See our web page on immunisation for more detail about who is included in each wave (this may also depend on your age).

We have worked with NHS England and NHS Improvement, and the Chief Medical Office, to develop guidance for clinicians. This explains the reasoning behind the decision not to add MND to the original shielding list, clarifies the status of MND as potentially extremely vulnerable, and explains the process by which clinicians can individually register people living with MND as extremely vulnerable to COVID-19.

The following can also help:

  • If you can, ask friends, family or neighbours who are well to go out and get food and other essentials for you.
  • If you need urgent help and have no other means of support, contact your local authority in England and Wales to find out what support services are available in your area. Local authorities have established dedicated helplines for support requests. In Northern Ireland contact your local health and social care trust.
  • If you live in England and meet the criteria for support from the NHS Volunteer Responders programme, you can ask for help with food, prescriptions and essential items.
  • See our information about coronavirus for more details about getting support, including deliveries of food and supplies.

For further information on support to access food, please see the UK Government's guidance on accessing food and essential supplies.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262