Inconsistent and Confusing Advice about Isolation, Social Distance and Shielding and WHY this is REALLY IMPORTANT.

[WinterSwimmer]

This post began life as a response to another user's post. It got a bit long, so I am posting it in its own right. I would love to hear people's responses and experience of this.

I interpreted the recent rheumatology advice in the same way (see the other post here: healthunlocked.com/lupusuk/.... With Lupus and Class IV nephritis (at stage CKD3b), and on only one immune suppressing medication (plus hydroxychloroquine etc), I should use my discretion about isolation versus social distance. However - over on the kidney care site - as someone with CKD stage 3 and taking an immune suppressant, I find myself in the extremely vulnerable group. Indeed - my kidney specialist has phoned me to let me know I should be staying at home in isolation for 12 weeks (advice reiterated by my GP and by the LupusUK site).

The advice (Kidney Care UK) for "Extremely vulnerable patients" states:

"Women who have had a kidney transplant, or take immunosuppression for kidney diseases, are defined as “extremely vulnerable” by Public Health England. If you are contacted to confirm that you are in this group, you are advised to follow shielding measures to keep yourself safe, irrespective of pregnancy."

It gets more complicated than this though, because I live in Wales. In England, there is a .gov.uk website so that individuals can register themselves as extremely vulnerable. In Wales, we have no such thing (for the moment at least).

However, while Public Health Wales refers to letters being sent out by the English government (phw.nhs.wales/topics/latest..., the Welsh government page says that these will come from the Chief Medical Officer of Wales (gov.wales/get-coronavirus-s.... Importantly - the categories in Wales, according to the PHW site are slightly different from those used by rheumatology, as defined by the article that separates only slightly vulnerable (2 points?) from extremely vulnerable (3 points). In Wales, under 2 of the 7 categories, I count as extremely vulnerable and should be shielding. In England, my kidney disease is not serious enough to warrant shielding ( I am not on dialysis). I have not received a letter formally advising me of my status, but does that mean I do not need to isolate?

Reference for England: gov.uk/government/publicati....

Reference for Wales: gov.wales/guidance-on-shiel...

THE POINT IS THAT the advice being given in different parts of the country and by different organisations (PHW, PHE, rheumatology.org, Kidney Care UK, gov.org.uk, gov.wales) is inconsistent and confusing (not to say dangerous). According to my GP and Kidney specialist - I am vulnerable enough to be advised to stay at home for 12 weeks (not just to social distance), and Kidney Care UK agrees, classing people who take immunosuppression for CKD as extremely vulnerable. Yet, by the advice of rheumatology.org, I score only a 2 and should therefore "use my discretion" about whether to maintain social distance or self-isolate. Presumably that means I won't get a letter - and indeed, to date I have not had one.

WHY IS THIS SO IMPORTANT?

For several reasons (and these will apply to lots of people, not just to me):

1. If you live alone (as I do) self-isolation is challenging both physically and mentally. I find myself completely dependent on the goodwill of others for food and delivery of medication. After 10 days - I am beginning to be slightly batty, cannot sleep at all, and feel like crying all the time. Others will feel the same. Do I not need to isolate? I really have no idea - but I wish I knew!

2. If you work - a letter that clarifies your status is very important, as it confirms to your employer that you are not 'swinging the lead' - and trying to get time off, or work from home unnecessarily.

3. I suspect a letter will also come in handy if you end up needing to apply for benefits or for the government's self-employed compensation scheme.

4. If you need help with getting food delivered (in Wales at least), or other support, the letter is supposed to give advice on how to access that support.

There may be other reasons, but these are the ones I have thought of.

These categories are therefore extremely important - but are not at all clear (especially at the boundary between vulnerable/extremely vulnerable).

I do understand that governments, health services, and support organisations are all having to respond very fast to the Covid-19 Crisis and that this is very difficult in such a changeable situation. But as citizens - of England and Wales (and Scotland and NI?) we could really use some clarity and consistency. Not just our health, but also potentially livelihoods, are at stake here.

I would be really interested to hear people's responses.

[Hidden]

Yeah first time comment here - but I’m total 100% with you - this is no time for devolved healthcare!

[ange726]

Hi WinterSwimmer.

Well said. I posted a few days ago, saying that according to Rheumatology tables published, I should self isolate but nothing stricter. However, my GP called saying I was extremely vulnerable and very high risk so should be shielding and that the NHS have missed out a lot of people and I probably won't receive a letter.

The issue there is that supermarkets (sainsburys and waitrose) won't deliver unless you are on the NHS database. I have applied to get on it but I know, as they are inundated with requests, I'm not holding my breath). I am, extremely lucky that I have an understanding boss and a husband who supports. Apart from 1 dog walk (I live in the countryside) a day, I'm indoors and see no one.

Do you think GPs could be making their own assessments?

Keep well, stay safe and keep smiling x

[WinterSwimmer]

Update: the Welsh government posted on its Facebook page yesterday afternoon (30th March) that it is sending out letters this week. So, as usual, in Wales we are a little (or a lot) behind other places.

It remains to be seen how the Welsh categories have been interpreted. Many of the comments on Facebook are from other anxious and confused people with other conditions, who suspect they should be isolating/shielding but have not been told. Many have tried to get confirmation from their GP surgeries (as advised by the government), although as many surgeries are now screening calls - some have found it difficult ( as I have) to get through/get past a receptionist to talk to a doctor. Others have found that the surgery staff know nothing about a letter, and don't seem to understand why it is important.

[Tykle]

I totally agree. The rheumatology advice puts me at low risk and the NHS advice says SLE is high risk. I've decided to put myself in the same group as the over 70s, as "moderate" seems right to me. How should the advice should be interpreted? The rheumatology advice is written for rheumatologists. Does that mean that, of their patients (who may be a higher risk anyway) some have an additional risk? Am I at low risk for an SLE patient?

I don't know how I will find the right evidence I might need for work as this continues!

[WinterSwimmer in reply to Tykle]

This matters precisely because some people will need it for work, or to get a supermarket delivery - as well as, of course - so that people can take the appropriate action to keep themselves well. I still don’t have a letter and I don’t think I will get one now. I have given up wondering about it - and am just following my own advice.

[Tykle in reply to WinterSwimmer]

That's the plan I'm following too as it's the only thing that makes sense. Let's hope more official information is in the pipeline so that we know where we stand. At the moment I'm keeping a copy of the NHS guidance, which states SLE as high/very high risk so that I can have something official as evidence.

[Willow1414 in reply to Tykle]

Hi Tykle

Wonder if you could post the NHS guidance about SLE as high/very high risk .

🦋

[Tykle]

england.nhs.uk/coronavirus/...

page 4

[Tykle]

Just for interest: although the rheumatology guidelines put me at 0 grade for risk, I've just received a high risk letter from the hospital where I go to rheumatology (totally unexpected). I suppose lupus is so complex, it's down to individual cases and so there will never be any general guidelines.

[WinterSwimmer in reply to Tykle]

That is interesting. Thanks. Those guidelines give me a 3, but no letter. Are you in Wales, Scotland or England?

[anjia in reply to Tykle]

I also (unexpectedly) received this letter today . When I spoke to my GP at the start of all this he didn't think that I was in the at risk category as I don't have any major symptoms, no organ involvment etc... I have however recently restarted hydroxycholoroquine, precaution if i get pregnant as i am ro+ rather than symptom management. Am super confused now and haven't been able to get hold of any one at my rhuematology dept for anymore clarification.

[Tykle in reply to anjia]

It's a bit of a shock isn't it? At least we can register on the government site to get on the supermarket delivery lists!

[anjia in reply to Tykle]

It is indeed Tykle. Have you been able to register? When I went on the site I didn't know which box to tick when it came saying what condition I had. And when I tick none it said I was eligible for support. Eek. This is all very strange.

[Tykle in reply to anjia]

I did exactly the same thing so went back and said that I did have one of the conditions as it was the only way to register and we were instructed to register in the letter. It's the only way to obtain priority supermarket shopping.

[Tykle]

I'm in England. I have been told by an immunologist after taking part in a gene study that I'd be more susceptible to developing pneumonia, so maybe that was it as I am not on any immunosupressants and haven't been for a few years.

[WinterSwimmer]

I am in Wales, which is notably c**p.

[Tykle]

Well, that's certainly persuasive!