Clarification on "Vulnerable" v "Extremely Vulnerable" categories

[heatherevans28]

I have decided to post this due to the high levels of confusion there appears to be on other threads, and the misinformation flying around. Hopefully Lupus UK will post something similar soon.

Here are the facts. There are two major categories that the government are using for those who are at high risk of complications from Covid-19: (1) vulnerable and (2) extremely vulnerable.

The "vulnerable" category includes those over 70, pregnant or with underlying conditions (including SLE, no matter what the treatment). These people are to self isolate within their own home but can go out for a walk once a day as long as its 2 metres away from others, and should only attend the pharmacy/ shops if absolutely necessary (but following strict social distancing). Household members are to limit leaving the house as much as possible and strictly follow hygiene. This is the same guidance for everyone now, but those who are vulnerable must be especially cautious, and follow it for 12 weeks (instead of 3).

The "vulnerable" social distancing guidance is here: gov.uk/government/publicati...

The "extremely vulnerable" category includes cancer patients, transplant patients and (importantly for us) those on high immunosuppressive medication that equals 3+ on the scoring system. This does not include hydroxychloroquine. The scoring system can be found here: healthunlocked.com/api/redi...

These "extremely vulnerable" people are mostly being written to by the NHS / government with advice. It applies in England, Wales and Scotland. The advice is not to leave the house or your garden for any reason and to self isolate from those in your household completely. This means separate beds, bathrooms (if possible), towels and staying 1-2 metres away at all times. All surfaces should be cleaned before use by the person, and schedules might need to be drawn up for showering etc.

The "extremely vulnerable" guidance is here: gov.uk/government/publicati...

I hope this helps some and provides clarify for those who are confused.

I have personally had suspected Covid-19 after seeing my sister for a couple of hours (the only person I've had contact with outside my house in months). It is just bad luck sometimes, but we can all do our best to minimise our risk as much as possible.

They are not testing sadly but I was rushed to hospital by ambulance and the doctors were fairly certain. I will never know for sure, but after a short spell in hospital I am now recovering at home. We are on day 11 of isolation and I will continue for 12 weeks just incase I am not immune. I am in the extremely vulnerable category due to being on over 5mg prednisolone and MMF.

I am happy to answer questions people may have but also want to say that many of us who are high risk will survive this if we seek medical advice early.

All the best to everyone and keep smiling x

[Ruby3333]

Thank you for that post I work in dr Surgry and don’t believe I have to isolate for 12 weeks they want letter to state this which I haven’t got yet I have SLE and COPD I am not happy I have to be off work can’t see my kids or grandchildren but if it’s going to save lives I will cope keep safe everyone x

[heatherevans28 in reply to Ruby3333]

I would just give them a copy of the government guidance. If you are vulnerable but not extremely vulnerable, you won't get a letter. I know it's hard but it's definitely for the best x

[happytulip in reply to heatherevans28]

I agree. If you have SLE and get sick it might mean that you need hospital rather than recover at home which will only put further strain on the medical teams.

[Barnclown]

🤩 THANKS V MUCH heatherevans: now have been able to make my most recent post here more specific re distinction between the NHS letter I got today classing me ‘extremely vulnerable’ & the NHS link to applying online for ‘‘vulnerable’ status (the link is below)...HOPE I’ve got this right now 🤞

❤️🍀❤️🍀 Coco

healthunlocked.com/lupusuk/...

[heatherevans28 in reply to Barnclown]

You're welcome. Yes, absolutely. If anyone is unsure whether they are extremely vulnerable or not, they can still apply for assistance. I'm glad I could help x

[Joni2011]

This is a very useful clarification for me. Thank you very much! I am 'vulnerable', so will stay home apart from short walks round quiet streets. x

[heatherevans28 in reply to Joni2011]

I'm glad it has helped x

[suzannah16]

thanks heather, hope you are feeling better.

[heatherevans28 in reply to suzannah16]

Thanks, I'm slowly on the mend thankfully. My poor body is just very weak now x

[BookishVibes]

Hi Heather, that's super helpful information, thank you. Can I ask what symptoms you had for the suspected Covid-19? I've heard that not everyone with the virus has high temperature etc? BV x

[heatherevans28 in reply to BookishVibes]

Hi, no problem at all. I was very classic in that I had all the symptoms. It started with a really sore throat and worsening fatigue. I then had a very dry and painful cough, high temperature over 38 (though this fluctuated a lot.throughout the day), shivers, severe muscular pain and generally feeling achy. This went on for 5 days and I stayed home throughout this but adjusted my meds according to my normal sick days rules.

I then woke up last Tuesday unable to catch my breath and with very sharp chest pains. We got medical assistance from NHS24 at that point who sent an ambulance. My doctors in A&E were convinced I had it but weren't testing unless you were going to a specific ward so we will never know. The problem is that all the symptoms also match flu, but the approach medically is the same thankfully.

Hope that helps x

[BookishVibes in reply to heatherevans28]

Thank you so much. Sending you lots of get well wishes and that you build back up soon x

[milkwoman in reply to heatherevans28]

Oh my - I’m glad you are on the mend! Thank you for this! I was wondering what it may feel like to contract the Covid-19 virus. Very scary I’m sure!

I know everyone is different but it’s nice to get at least an idea of what could occur.

Rest, heal and stay safe.

~hugs~

[WinterSwimmer]

Hi Heather, thanks for the informative post, which prompted me to write a long, critical response (NOT IN ANY WAY aimed at you, but to discuss the confusing and inconsistent advice being given in different parts of the UK by different organisations).

The response got so long that I have decided to post it in its own right - and hope that people will respond.

I really appreciated your post because it pushed me to organise my thoughts on this, in a way that I have not been doing until now.