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.
