Disagreement with DH about letter ‘advising’ you to shield

[Littlemiss74]

I have RA and got a letter from the rheumatology dept at the hospital ‘advising’ shielding if taking certain meds. It wasn’t the official NHS letter but they enclosed a copy of that too.

DH has been saying that schools may go back after May half term and he is currently on furlough until the end of April. Because I’ve had this letter I am very anxious about him going back to work and dc’s going back to school while I am still supposed to be staying at home. I would rather keep dc’s at home.

This has caused some tension as DH is saying that my letter wasn’t the official NHS letter, it was just a letter from the hospital advising to shield but not insisting. He also said that I’ve been out for walks (which my gp ok’d) and so I’m not properly shielding. He also said my letter didn’t state an end date for staying home and so we should seek clarification. Basically as soon as the schools can go back and he can go back to work he wants to.

I’m anxious anyway but also feel really upset that it’s almost like he thinks that I’m overreacting about following the advice on the letter and that mine wasn’t ‘the proper’ letter.

I have to say it doesn’t seem very clear. What are family members meant to do if work & school expect them to return? Is my letter an instruction or just advice? What’s the difference between the NHS letter and this hospital letter? Are they both equally valid? And why haven’t they put a date on saying how long to shield for?

I’m quite upset that DH can’t seem to wait to get back out there knowing that I am more at risk. Anxiety and tension with him plus more stress at work due to increased workload means I’m feeling crap tonight. I don’t know what to think any more.

@jinglesticks thanks - i think the problem is he doesn’t think I need to shield. Will your DH not need to return to work?

His work are being really good about it and letting him work from home. I am worried about the future. There may come a time when we have to rethink things.

I really do think your letter counts as a “shielding letter”. Obviously no one knows for sure what the risk is, but it does sound like you are in the group being advised to shield.

I think the only thing for it is to ring the consultant with DH and ask him to clarify

So a doctor tells you to shield and your husband, who is presumably not a GP, disagrees? I know who I would trust to make the right decisions for me in a pandemic - the one with years of medical training and experience. It's not your husband.

Which drugs are you on?

^^ sorry didn’t mean to post that quickly.
There’s a flow chart for rheumatology that’s quite clear if you want me to send to you?

It's worth clarifying with the hospital because at the moment it's reasonably easy to shield while schools are closed and your husband is furloughed. It's going to be nigh on impossible, especially when the schools go back. You can't really keep your children off school indefinitely I wouldn't think. This is where I feel we've just been abandoned with no guidance about what we might need to do or change come June.

@JackJackIncredible thank you, I have seen this as someone posted it on another thread. Did you get the flow chart with a letter? When I followed it if said I should strictly social distance but didn’t need to shield. This is why I’m confused as the letter advises shielding.

@Hearhoovesthinkzebras this is exactly how I’m feeling. It’s all very well saying shield for 12 weeks but if my DH has to go back to work I will have to go out to get DC’s from school. I know they will have to go back but if they are going to be mixing with hundreds of kids from hundreds of families there seems little point in me shielding. I need to look after them when they get home from school so can’t possibly stay away from them.
I just had a bit of a cry in the bathroom, all the uncertainty is getting to me and I’m knackered from increased workload. Feel like it’s all putting a strain on marriage too. Thanks for listening everyone, I find this group so supportive😊

I had the shielding letter, the texts as well. I have RA not currently on any drugs as had ovarian cancer last year. When I read the guidance I don’t come under the category and my oncologist told me in March I was no more risk than anyone else For Covid-19. It scared me though so I called the GP and they said that I was ok to go out that it was done on codes and because I had cancer within a year that was why. As I am currently in remission and it was 10 mths since my last chemo I can go out. Not sure if that helps but sometimes just because you get a letter doesn’t mean it applies to you the NHS is under pressure and they are being overly cautious so no one is missed. Therefore I echo previous people speak to the consultants/dr they know you rather than a code and will have a better idea if you were ok or not. Good luck.

I think it’s the way the letter is worded i.e. badly!!! You don’t need to shield unless it says so on the flowchart.
My rheum clinic sent out similarly badly words letters and got so many phone calls, they had to send another to clarify.

It is so hard. I guess the "easy" answer is that your husband and children go back to work and school and you isolate within the home, but, that only works if your husband can do all of the care for the children, constantly, which potentially isn't doable.

The only other answer is that you home school the children and then your husband isolates from you all when at home?

I guess most importantly you need to talk to your consultant to actually find out how important it is that you shield though all I've had is very general advice in that all they know is that we are at high risk but don't know if we will definitely be seriously ill if we get it. It's all just guessing isn't it but these are such big decisions we are expected to make. Can you imagine a couple of months ago telling people you were going to decide whether to leave a job or not by tossing a coin, but that's how it feels to me. It's all well maybe this or possibly that.

I do really feel for you though. It's a tough choice when you've got children to consider too.

Can you speak to your rheumatologist rather than your GP? I'm on the borderline (only take one medication at the moment but should have started on steroids as things are not well controlled which would have pushed be into the shielding group) but I spoke to my consultant and he said I'd be fine to just socially distance as I have no other comorbidities and am, arthritis aside, fairly healthy. I'm not particularly worried to be honest, my immune system seems to be fairly robust despite the medication. I often find that GPs give slightly too generic advice which errs on the side of overcaution (which they probably should do).

@JackJackIncredible would you mind sending me the flowchart so I can see if it says the same result for me as the other one that was put on here. Many thanks

Of course. :) I’m on my phone so if I don’t get around to it tonight, I’ll do tomorrow.

Thank you

Does this help?
www.nras.org.uk/data/files/COVID19_risk_scoring_guide.pdf

@JackJackIncredible yes that is like the one I saw on one of the websites they recommended, VersusArthritis I think. I take 2 drugs so that puts me at a score of 2 which is not classed as shielding. But the letter I got suggests shielding. So which is it? It’s kind of necessary to know when there are so many implications to consider. Thanks for posting😊

Have you looked at the guidance on Versus Arthritis? I'm in a few Facebook groups for people with RA and the letters are a bit haphazard- people on multiple immunosuppressants not getting one and people on no drugs getting a shielding letter.

@DreamingofSunshine yep I’ve done the scoring thing on Versus Arthritis and I got a score of 2 which means strict social distancing but not shielding..

I'm in exactly the same position. But my letter says that they are recommending stricter action than nras and that therefore I should shield. This is despite the letter linking to various sites and guidance, that says I just need strict SI. It seems that they are disagreeing with official advice.

It's very possible that your official shielding letter is still to come. We didn't recieve the one for my daughter till a couple of weeks after her consultant had told me she should be shielding in a very informal email.

The listed conditions given in the letters and guidance etc are just a guideline, not an exhaustive list. The initial batch of shielding letters were generated from a computer algorithm which picked out patients who met certain criteria, but as far as I'm aware the more recent ones are from consultants and GPs going through their patients one by one and deciding which need to shield. Two people could have the same condition, and take the same meds, but one might be in the shielding group and one not based on their general health or how many hospital admissions they'd had etc.

Registering yourself on the government webpage for high risk people is supposed to trigger the NHS looking into your details and might speed things along.

@Littlemiss74 I'm a score of two and I'm a SAHM to a two year old, DH is WFH but in a role that is crucial to CV19 so can't look after DS. I'm not shielding but my only trip outside is for a walk on the streets when it's quiet- my DH does all the food shopping.

My Rheumatologist said the Versus Arthritis site is the most accurate, and some people have received letters in error as it was always going to be a very hard thing to get letters out to 1.5 million people correctly.

What do you feel comfortable doing? If you can, I'd call or email your Rheumatologist.

@DreamingofSunshine I’ve just emailed my rheumatologist and asked him if me & my husband can have a quick call with him sometime. Then whatever he says I will go with. I’ll update with his answers in case it helps anyone else.

That would be very helpful. I can't even get hold of my Rheumatology department, I moved 300 miles away so changed to a new hospital, had my first appointment cancelled so now I'm in limbo between two rheumatology services who both don't see me as their patient.