How to get registered as extremely vulnerable

Get MND on the List

August 2020 update:

The clinically extremely vulnerable list will be discontinued from August 1st (in England and Northern Ireland) and August 16th (in Wales). From those dates onwards, people will no longer be advised by their Government to shield, and it will no longer be possible to register as clinically extremely vulnerable.

Although lockdown is starting to ease and shielding is ending, COVID-19 is still present. This means there is still a need for social distancing and good hygiene.

When shielding ends, everyone will be expected to follow the same government advice on social distancing. Guidance for England can be found in Staying alert and safe (social distancing) and their summary of what the general public can and cannot do. There is separate advice for Northern Ireland and for Wales.

Previous information, current until 1 August:

The Government's policy is that people living with MND are not automatically identified as clinically extremely vulnerable. However, people with severe respiratory problems should all be identified as clinically extremely vulnerable. This includes people with MND who have respiratory or bulbar symptoms.

Where not already identified as clinically extremely vulnerable (a letter from the NHS confirms if this has happened), clinicians may add their patients to the Shielded Patient List (SPL).

Once you have been added to the list, you will receive a letter from the NHS which contains guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19. You will also be able to access the Government’s food and medicines support offer. We are encouraging clinicians to add anyone living with MND who is considered clinically extremely vulnerable to the list.

Shielding guidance update: 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 shielding list, clarifies the status of MND with regard to shielding, and explains the process by which clinicians can individually register people living with MND as extremely clinically vulnerable to COVID-19.

See below for the steps that you can take in England, and headings for separate links in Northern Ireland and Wales, where guidance may differ.

If you live in England

If you live in England, have MND and don’t know if you should be following shielding guidance, get in touch with your GP or named hospital clinician. They will be able to advise on shielding. If appropriate, they will send a letter to you that confirms you have been registered.

In order to register for Government support once you have been added to the Shielded Patient List, please visit www.gov.uk/coronavirus-extremely-vulnerable and follow the steps shown below. All MND patients, whether or not they require support, are encouraged to register on this website. If you cannot sign up on the website, you can register via the Government’s automated line on 0800 028 8327

If you are not clinically extremely vulnerable or haven’t received a letter yet to confirm this, you may be concerned about being able to access food or medicines. The following can 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 to find out what support services are available in your area. Local authorities have established dedicated helplines for support requests.
  • If you or a family member meet the criteria to get support from the NHS Volunteer Responders programme, you can call 0808 196 3646 and ask for help with food, prescriptions and essential items.
  • See our information about coronavirusfor 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.

If you live in Northern Ireland

If you live in Northern Ireland the advice is different. See the guidance on shielding for extremely vulnerable people, as provided on the NIDirect Government Services site.

If you live in Wales

If you live in Wales find information at Gov.Wales including details on shielding.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262