NHS Policy re Covid 19 & Behcets 🦠 - Behçet's UK

Behçet's UK

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NHS Policy re Covid 19 & Behcets 🦠


Hi everyone

Has everyone found the official report published by the NHS on 19/3 giving clinical rheumatology policy for Covid 19?


Clinical guide for the management of rheumatology patients during the coronavirus pandemic

16 March 2020 Version 1

This doc gives a complete list of rheumatology conditions and how patients need to be protected. Behcets is listed as H/V High risk.

However my GP (also chair of my local CCG) didn’t know anything about the document, only having received the basic published list - cancer, heart conditions, diabetes etc.

Downside is he has now put me in the Shielded group and asked me to stay at home for 12 weeks. I guess it put my mind at rest, v bored, v v bored, but at least have guidance on this now.

All the best to you all.

5 Replies

Thank you Furst for the reminder. Gives me an opportunity to comment.

You, and hopefully others, will have been monitoring our Pinned Post to the right of this page; where we have posted current promulgated (authoritative) guidance - and flagged that actual document since 17 March.

Fourth paragraph down emphasises the very point you made which we foresaw.

"It is important that you consult your treating clinician on exact prognosis. However, for those GP’s or clinicians that are not over-familiar with the complexities of Behçet’s you can guide them to the following promulgated guidance." .... then goes on to list them.

We trust this is helping everyone at this time of concern, the most important aspect of which is noted in the preceding bold paragraph, provided by our Medical Advisory Panel.

We have also provided some suggestions to help with the boredom, lower down the document, so we hope that might help a little also. Other ideas always welcome!

All the best.


Furst in reply to TonyWT


Since i posted that my GP declared me ‘shielded’.

Bit of a farce though because I can’t get home delivered food.

I’ve not had the magic letter, though they tell me I will. As far as I can tell the GP has so many fragile & elderly patients they can’t keep up with the need to write to everyone.

I went to the Govt webpage where we are supposed to be able to get authority to jump the queue of groceries deliveries but couldn’t use it without the magic GP letter (& code).

So in short being told I’m shielded sadly so far means nothing. I’m more stuck by my spinal issues than the Behcets - but of a joke because the Behcets is being a complete pain right now.

All the best to everyone.

Furst; spy, rockstar, boring old git, in pain but I don’t have Coronavirus 🦠🥊

TonyWTAdministrator in reply to Furst

Dear Furst,

I know it is frustrating but as soon as your doctor submits your name, you will get a letter – not from the doctor but automatically generated by NHS Digital. If you are in any doubt you could check-back with the GP surgery and confirm that they have notified NHS Digital from their GP IT system. The updated list will be generated from Monday 6 April – which is why you have yet to receive a letter (and it may be a few days after that).

Once you receive the letter you must register with the Government’s website: gov.uk/coronavirus-extremel.... This will enable you to access support with activities such as obtaining food packages or medications. Patients are being added to the central data base all the time and there will be a delay between you being added to that database and being recognized by the website/ support phone line as someone who is eligible for support.

After the first tranche of letters were sent out, an updated NHS shielded patient list is generated by NHS Digital every day, incorporating additional patient lists from hospitals and any additional cohorts of patients provided from external bodies, including acute trusts and GPs. It will also be produced weekly each Monday evening, incorporating updated feeds from GP systems (from 6 April). It is this process that ‘triggers’ the letters. They also advise that even if individuals do not need any support with daily tasks, they are advised to register with this website to let Government know

Hope this helps, explain what is going on.


TonyWTAdministrator in reply to TonyWT

I thought I'd check the link - typical, a go round in circles Government site. Trawl down the page to this bit - bold heading

How can you get assistance with foods and medicines if you are shielding?

where it says:

Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.

click on the link which takes you down to this message

Get coronavirus support as a clinically extremely vulnerable person

If you have a medical condition which makes you extremely vulnerable to coronavirus (COVID-19), register and tell us whether or not you need support.

You may have received a letter from the NHS telling you that you’re clinically extremely vulnerable, or been contacted by your GP or hospital clinician. If this has not happened, contact your GP or clinician after you register with this service.

It may take time for any support offered through this service to arrive. Wherever possible you should continue to rely on friends, family and wider support to help you meet your needs.

You can register yourself, or on behalf of someone else.

Start now


What a performance. Obviously designed by an IT idiot frankly!

0115 - Time for bed!


Furst in reply to TonyWT

Thanks Tony

That’s much better info than my GPs receptionist could tell me. In retrospect I guess she was actually probably making it up in an effort to put my mind at rest.

Thanks again


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