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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 has sent out text messages and letters to certain people due to them being particularly vulnerable to COVID-19.

But:

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

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

And please note that the list used for the initial text and letters sent by the government was unfortunately not perfect!

As such, MS teams are going through their own patient lists, identifying anyone who should be shielding, and sending out their own letters.

I’m going to be explaining who is actually in that extreme risk group in this post, and what shielding means in practice. If after reading the details, you think you are indeed in this ‘extreme risk’ group but you have not received a letter or text, you may well have one coming soon. In the meantime, I would recommend:

  • getting in touch with your MS Team to ask for clarification
  • shield yourself as much as possible whilst you await clarification from your MS team.

How can I be in the vulnerable group but not receive a text or letter?

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. This currently includes anyone who has MS.
  • ‘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 or your MS team, 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 for 12 weeks, with added extras such as not coming into contact with your housemates, not sharing towels, cutlery etc. with your housemates….see this page for the exact criteria. Obviously this might not be practical in many cases. I’ll be introducing Shielding and a comparison of the extra steps you need to take when Shielding vs. Staying at Home later in this post.

But before I cover the practical steps you need to take if you are shielding, let’s work out whether you are in the ‘extreme risk’ category or not.

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’s medical advisors believe you should be in this ‘extreme risk’ subgroup if you:

  • have significant difficulties with breathing or swallowing (for instance if you need artificial feeding)

BUT there are also other factors that mean that this isn’t a black and white area. Your MS team will be taking multiple factors into account when deciding whether to write to you about shielding, such as:

  • the levels of your white blood count being significantly low (this includes lymphocytes and neutrophils) despite being on a DMD that’s defined as not being particularly risky. Levels of immune-suppression differ between DMDs, but also differ from person to person.
  • whether 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.

If you have MS, but you also have another condition that is also in the ‘vulnerable’ category, your neurologist might put you in the ‘extreme risk’ category. This includes:

  • pregnancy, being over 70
  • having trouble with things like preparing meals and housework because of frailty
  • usually need an aid for walking, or you use a wheelchair because of your MS symptoms or frailty (score 6.0 or higher on the Expanded Disability Status Scale)
  • diabetes
  • high blood pressure
  • obesity
  • severe asthma
  • having a course of ocrelizumab (Ocrevus) or rituximab in the last 12 months
  • the levels of white blood cells in your blood (lymphocytes and neutrophils in particular) – a few people have reduced levels even though they are on a low risk DMD.

The more of these things that apply, the higher the risk, so your neurologist or MS team might tell you that you need to shield. This is done on a case-by-case basis.

So MS teams are also looking at their own patient lists and contacting anybody who they decide needs to shield due to their individual circumstances.


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. It appears to be the neurologist’s call as to whether you are at ‘extreme risk’ and need to practice shielding. So if you are unsure, please do get in contact with your MS team.

Also do bear in mind what I said above – for some individuals, your individual circumstance might mean that, even though you are not taking Lemtrada, Cladribine or HSCT, your neurologist may still decide that due to additional factors, you are in fact eligible to be in the ‘extreme risk’ category. In this case, your MS team will be in touch with you.

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 for 12 weeks
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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.

You must shield for 12 weeks, regardless of whether the rules for the general public are relaxed or not.

If you do fall into this ‘extreme risk’ category, you can self-register for the extra support you need on the UK government website. You can also contact one of your local Coronavirus Community Groups. 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 or letter?

If you think you or a loved one are in this highest risk category and have not:

  • received a text or letter from the NHS

or

  • been contacted by your MS team or GP

do get in touch with your MS team or GP by phone or online. I’d also highly recommend shielding until you get clarification.

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 blanket contacting of people at ‘extreme risk’ come from?

see this letter from the NHS to the government.

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3 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!

  • Reply Liz Banks April 7, 2020 at 2:09 pm

    Thanks for this real easy to follow having read many other gov and new web sites

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