High risk letter: I'm sorry, I'm sure that there... - LUPUS UK

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High risk letter

MOOG144 profile image
18 Replies

I'm sorry, I'm sure that there are many posts on this but just need some advice.

I haven't received the high risk txt or letter but I'm on immunosuppressants, steroids, 2 x blood pressure meds and a load of other stuff...

The issue I have is whilst I am self isolating my partner is a key worker, his work are not being overly helpful with regards to forcing potential carriers to self isolate.

He has had several colleagues turn up complaining of family members they live with being unwell but they are choosing not to self isolate.

When he has complained and try to explain our situation they are asking for proof that I am high risk!

He said that he was going to self isolate by saying he had been exposed but the issue is that it just defers the issue for 14 days.

Do I need to speak to my Gp or Nephrologist or Rheumatologist?

I have not done it yet as I know all of our NHS is struggling but I feel completely at a loss to what to do

Xxx

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18 Replies
avionne profile image
avionne

Agree, i haven't received text nor call from gp or hospitals, yet others i work with that have less illnesses git the text

steve61 profile image
steve61 in reply to avionne

Hi, think that might be a different text the government sent out as standard and not the high risk info, it was just telling people to stay at home if possible!

Steve

MOOG, I would definitely talk to your doctor about a letter! And I hope they error on the side of caution and get you one.

My husband is the Chief of Police of his very small department, so has to go in (and since this has started he virtually is working around the clock with all the calls and texts he’s getting when off!) He has had one of the administrators of the college his department is for, test positive the other day, as well as one of his officers. Everyone is freaked out. I probably should be scared too. But, what will be will be. I know we need our law enforcement and other emergency people out there. I pray he doesn’t bring anything home to me, but, I have to figure ‘what will be will be’. We can only do what we can do and leave it in God’s hands.

My husband has gotten sick once in our 37+ years of marriage (except a minor cold of two). He feels invincible. 🤣🤣 I hope he’s right. I, of course, don’t want him sick either.

Hopefully your doctor will send you a note, but yes, ask. 🙏all my best to you!

happytulip profile image
happytulip

Are you in the UK? Speak to your GP asap and get a " to whom it may concern letter."

It might be difficult but to allow your partner to continue to do his vital work, could you move in with other family to keep yourself protected. This very issue came up on the Jeremy Vine show recently. Logistically you'd have to self isolate in your new household but it might keep you protected? Just an idea.

susan17 profile image
susan17 in reply to happytulip

Drs won’t do this at this time!

happytulip profile image
happytulip in reply to susan17

For what reason? My friend was able to speak to her GP and get one. She is on biologicals, pred and MTX and needed proof.

MOOG144 profile image
MOOG144 in reply to happytulip

Unfortunately we have a dog, the other half works shifts and all our close family are either high risk themselves, key workers or cant have dogs around... so no choice but staying our house together xxx

happytulip profile image
happytulip in reply to MOOG144

Difficult situation but there is always a best possible solution to any problem, whether we like the solution or not.

Some people in my neighborhood have given their dogs to friends for the time being. A massive wrench but it had to be done.

I'd say for now focus on getting a letter from the GP, which can be done. They have your records and you can explain the situation over the phone.

And I suppose self-distance from your partner as much as physically possible.

Best of luck.

MOOG144 profile image
MOOG144 in reply to happytulip

That's what we are doing, its killing me as been ridiculously down at the moment and can't even get a cuddle... scary times for everyone xxxx

susan17 profile image
susan17

I live in Fife, Scotland and phoned both my Drs today and my respiratory specialists secretary and they both had no information about the letters we are supposed to receive!

I’m in a similar situation and my husband was told he could take 3 months off - but it’s only unpaid because he’s with an agency. They still want him to produce evidence that I’m in high risk. He’s left anyway because he isn’t confident that the agency or usual place of work were doing anything to protect vulnerable clients or staff. But anyway here’s the link for NHS England - I’m in Scotland where it’s still to be applied. No text or letter for me either: england.nhs.uk/coronavirus/...

MOOG144 profile image
MOOG144 in reply to

Thanks Twitchy x Hope you're staying safe x

in reply to MOOG144

Yes I’m cool - staying home apart from driving with hubby and dogs to quieter parks and beaches (Scotland still nippy so plenty of these!) Xx

miccika1 profile image
miccika1

Why don't you just ask your doctor for a letter to explain that you are high risk?

Sarah74 profile image
Sarah74

Hello

Fortunately I have a good employer and relationship with my rheumatologist

I don’t have a letter but I’ve been immonusuppresssed for 28 years

Apparently there was a very complex cross check system of who gets the letter

My rheumatologist put it in an email to be that I am moderate to high risk and err on side of caution and isolate for the 12 weeks so I have it it in writing

Perhaps ask the GP now before they get even busier

I understand this more now after reading the Lupus UK leaflet as this mentions if you are taking 20or more of steroid and or one of the other strong immunosuppressive drugs you are high risk

I’m wearing down from 14mg and have just stopped MMF 4 months ago so my risk reduces slightly

Take care

maeows profile image
maeows

Hi there. This is the rheumatology current guidelines for who is considered high risk:

england.nhs.uk/coronavirus/...

Perhaps this in combination with some current medical evidence (rheumatology letter with diagnosis, prescription list) would help convince.

Rheumatology patients have by and large, seem to not have gotten any letters, I believe there is an open letter from the college of rheumatology asking why that is so somewhere online and as a result of that, produced their own clinical guidelines, as linked above. Seems like they have forgotten how many of us are immunocompromised, or have heart and lung involvement.

MargaretGail profile image
MargaretGail

You're on immunosupressants so should be contacted. The advice that I have read is to ring your GP surgery.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi MOOG144 ,

Not everyone has been contacted by the NHS so far. The NHS coding system couldn't identify all the extremely vulnerable patients so doctors and clinics are now reviewing their registers and doing risk stratification. They hope to contact everyone by 29th March.

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