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COVID-19 – Am I in the vulnerable group? What do I do?

Are you getting a text from the NHS or not?

The NHS is sending out text messages to certain people due to them being particularly vulnerable to COVID-19.

But:

  1. Who will receive a text?
  2. If you don’t receive a text, does that mean you’re not in the vulnerable category any more?

The answer: Even if you don’t receive a text from the NHS, if you have MS, you are still in the vulnerable category!

And, remember that texts are being sent out all the way up to Sunday 29th March, so it might be a few days before you receive yours if you are eligible. (If you’re unsure, always best to err on the side of caution in terms of which steps you take to keep yourself safe).

How can that be?

Important info – there are TWO SUBGROUPS within the ‘vulnerable’ category:

  • increased risk of severe illness subgroup (subgroup A in diagram)
    • you will not receive a text from the NHS, but are still in the ‘vulnerable’ group so must take precautions
  • ‘extreme’ risk of severe illness subgroup (subgroup B in diagram)
    • you will receive a text from the NHS with instructions to take extra precautions or be contacted separately by your MS team
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So please be aware that just because you do not receive a text or letter from the NHS, this does not mean that you are not still in the ‘vulnerable’ category! – it is just that you are not in the ‘extremely high risk of severe illness’ subgroup, but are instead in the ‘increased risk of severe illness’ subgroup.

Both subgroups are highly recommended to take extra steps to lower your risk, but in the case of being in the ‘extremely high risk of severe illness’ subgroup, you are highly recommended to shield. Shielding in practical terms is the same as self-isolating.

So am I in the ‘extreme risk’ subgroup, or the other one?

According to the government’s webpages, you receive a text or letter if you are in the ‘extreme’ risk subgroup, which includes:

  1. Solid organ transplant recipients.
  2. People with specific cancers:people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
  3. people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  4. people having immunotherapy or other continuing antibody treatments for cancer
  5. people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  6. people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  7. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  8. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  9. People on immunosuppression therapies sufficient to significantly increase risk of infection.
  10. Women who are pregnant with significant heart disease, congenital or acquired.
  • Additionally, the MS Society deems you to be in this ‘extreme risk’ subgroup if you have significant difficulties with breathing or swallowing (for instance if you need artificial feeding)

Also, bear in mind that, even if you don’t get the NHS text or letter, you might still be in this category, you just didn’t fit into the initial blanket-text/letter group – There a few nuances to the general category. Levels of immune-suppression differ between DMDs, but also differ from person to person. And if you have particular difficulty with your breathing or swallowing due to your MS, you may not have fitted into the blanket NHS text, but do qualify for self-isolation/shielding.

So MS teams are also looking at their own patient lists and contacting anybody who, whilst they didn’t fit into the blanket NHS text group, nevertheless due to their individual circumstance should also be considered to be in the ‘extreme risk’ subgroup and so need to follow the extra steps to isolate/shield. The MS team might also be able to alert the text service that you need to be added to this list.


Which DMDs put me in the ‘extreme risk’ category?

If you are taking a DMD that causes immune-suppression, you are potentially more vulnerable to the virus, though this is dependent on your lymphocyte count as well as other factors, so it’s not black and white.
For more information about particular DMDs, head to the MS Society’s page, which is being constantly updated as more is understood about how the virus affects people with MS (I’d highly recommend booking marking that MS Society page and returning to it daily at the moment).

In particular, according to the MS Society’s page, if you have taken Cladribine (Mavenclad), Alemtuzumab (Lemtrada) or HSCT (stem cell treatment), then you are automatically in the ‘extreme risk’ subgroup and must self-isolate/shield if you:

  • have taken alemtuzumab or cladribine within the last 12 weeks
  • have had HSCT treatment in the last 12 month.

For more details about the exact time you need to self-isolate for if you have had one of these treatments, head to the MS Society’s page.

In addition, I know of several people who have received the NHS text or been told by their trust or hospital MS team that as they are on Ocrevus, they are considered to be ‘significantly immune suppressed’ and so fit into the ‘extreme risk’ category. So please consider that the MS Society list does not appear to be exhaustive, and you may well be in the ‘extreme risk’ category – I’ll update this information as soon as more becomes clear.

Also do bear in mind what I said above – for some individuals, your individual circumstance might mean that, even though you are not taking one of the 3 treatments listed above, your neurologist may still decide that due to your blood count being unusually low for your DMD choice, you are in fact eligible to be in the ‘extreme risk’ category. In this case, your MS team will be in touch with you, or they might alert the NHS text service to send you a text.

OK, so what steps do I need to take?

Now that you know which subgroup you are in, you can work out what steps you need to take from the graphic below.

  • Increased risk subgroup (all Msers) = Self-distance
  • Extreme risk subgroup = self-isolate/shield
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You can also take a look here for what the MS Society recommends, and what the difference is between social distancing and social isolation/shielding.

If you do fall into this ‘extreme risk’ category, you can self-register for the extra support you need on the UK government website. This includes help with:

  • food
  • shopping deliveries
  • any additional care you need.
self-register for support getting your groceries delivered using the government website

What if I think I am in the extremely high risk subgroup but I haven’t received a text?

If you think you or a loved one are in this highest risk category and have not received a letter from the NHS by Sunday 29 March or been contacted by your MS team or GP, get in touch with your MS team or GP by phone or online.

What does Shielding mean?

Shielding refers to the steps you need to take if you are in the ‘extreme risk’ subgroup, to shield yourself from others. The practical steps you take to shield are the same as someone who is told to self-isolate because they have the virus. Check this link from the government which talks about these steps in the context of shielding.

So to reiterate, shielding and self-isolating steps are exactly the same. It’s just that if you are taking those steps because you have the virus, you are self-isolating,. If you are taking those steps because you are extremely high risk, you are shielding.

How does this affect whether I should stop going to work?

Are you a key worker? Even if you are, should you be going to work?

To understand what this means in terms of whether the government supports you to not go to work if you can’t work from home, see this webpage on vulnerable groups and employment.

In particular, it states:

“employees from defined vulnerable groups should be strongly advised and supported to stay at home and work from there if possible”

https://www.gov.uk/government/publications/guidance-to-employers-and-businesses-about-covid-19/guidance-for-employers-and-businesses-on-coronavirus-covid-19

Know that, if you have MS, this guidance for employers to support you to stay at home applies to you! – you are automatically in the vulnerable group!

For more information about what financial support might be available to you, head to my blog post COVID19 – What if I can’t work from home and don’t get paid not to work?

Where did this contacting of extremely-high-risk subgroup come from?

see this letter from the NHS to the government.

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2 Comments

  • Reply Debs Boo Riley March 24, 2020 at 4:26 pm

    Thank you so much xx

  • Reply Angela March 24, 2020 at 5:36 pm

    This is very helpful, thank you. Especially the explanation of the difference between being in the vulnerable group and extremely high risk group. Hope you’re keeping safe and well during these crazy times!

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