Shielding letter at last!: Today I finally received a... - NRAS

NRAS

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Shielding letter at last!

rounder
rounder

Today I finally received a shielding letter from my GP. The letter said I should have received a letter from the hospital, but as I had registered as at risk on the Gov.uk website they were sending me a copy of the original. It seems to me that the system is fairly chaotic, though I suppose the system is under huge pressure which is absolutely unprecedented.

The letter says to shield for 12 weeks, but having already shielded for 5 weeks I assume those count towards it. Somehow seeing it in writing makes one very aware of your own vulnerability, even when you know it already.

Hoping every one is keeping safe and well.

16 Replies

I am taking Methotrexate 15mg injections and Etanercept 50mg weekly and prednisolone 10mg daily i am self isolating but not had anything official yet. Is there anyone else on these meds not heard anything?

Lolabridge
Lolabridge in reply to sallyc

I suggest you contact your GP as you should have received a letter by now.

Your medications put you in the "shielding category" according to the table produced by the British Society for Rheumatology.

Neonkittie17
Neonkittie17 in reply to sallyc

Hi Sally I hope you get yours. You are certainly in the highest scoring. I haven’t had a letter either and l know from speaking to one of the rheumy nurses at the hospital about postponing my infusions for a couple of months, that they cannot identify who is on what medication easily from their records to write to them, so I doubt I’ll get one. I know they struggle with anything out of normal procedure as they are so stretched. I did register as vulnerable with the government online form. Just got a standard acknowledgement a couple of weeks ago. I am going to write to my GP to clarify where I think I stand.

I am on Mtx injections and Rituximab infusions every six months. That scores 2 and in the self isolate category from the British Society of Rheumatology. Btw the nurse I spoke to said aggressively to me ... I don’t give a monkey’s about NRAS ... when I mentioned the difference in scoring category. I simply said I’d go with what everyone is following from the British Society. I told him I only mentioned it to him to point out there were differing views. I find him so rude anyhow and don’t really like to deal with him but it’s him or no one at the mo. I am not taking oral steroids but I know my lungs are very sensitive to Rtx and it causes me to pick up chest infections and pneumonia. I’m on antibiotics every other month (Doxy) usually, for the past two years. Had 11 lots of abx in the past 16 months. It gets rid of it but it bounces back. (Clear CT and X-ray). I have been told by my consultant I get regular episodes of bronchitis (has turned to pneumonia when abx haven’t been prescribed) ) as a result of Rtx and low immunity. I don’t think my bronchitis is a comorbidity as such although it is more troublesome when it happens than the RA! I also have Graves’ disease which is hyperthyroidism but it’s stable and not classed as a reason to shield of course. I take Carbimazole to control it since 2006 and for the foreseeable future. Graves is classed as a comorbidity but not in the terms of this issue and for shielding.

The last paragraph on the British Society for Rheumatology at the foot of their chart includes the following ... “Patients who have R.A. are at an additional risk and may need to be placed in the shielding category”. Surely that and my meds would warrant a letter? I don’t think my hospital will provide one. As I said, too pushed to do admin.

It’s a bit of a grey area tbh for some people, but I am going to write more of less the above to remind my GP and hope if she is unable to provide a confirmation letter, that she can our my letter on my file. I don’t think the rheumy nurse who I spoke spoke to even knows I have chest issues as he doesn’t know me. He could assess me wrongly as I am not his patient as my biologics nurse sister can only do infusions now and not able to phone people. She’s the biologics expert so to be speaking to a nurse who doesn’t know much about them and is assessing you for categorisation .... it doesn’t work well really! Anyhow ..... good luck with yours. x

I spoke to my gp last week and asked for a letter as I am shielding and need one for work purposes. I was told I would not be getting one as they have had so many requests from patients they are not issuing any more regardless of level of risk. I haven’t received one in the first phase as I’m not under the rheumatology dept officially as my first appointment was cancelled!!

I’ve been given a sick note, I said I didn’t want to be ‘off sick’ her reply was... take it up with your employer!!

she100
she100 in reply to Mjw123

same here! 14day sick note,

Had my letter 3 weeks into lockdown, but it does not help when it comes to having priority for shopping. The big supermarkets state that we have priority, but I cannot even register with Sainsbury’s, I don’t want to have to go out for shopping, buthave no choice.

rounder
rounder in reply to Callabag64

I registered with the Gov.uk site and about 10days later had emails from 3 supermarkets to say I was on their vulnerable list, I still couldn't get a slot with Sainsbury or Ocado, but ASDA offered a free priority pass with a weekly recurring slot so I get deliveries from them every Friday.

jane1964
jane1964 in reply to Callabag64

I have found Tesco's and Asda useless but Iceland much better it might vary by area but worth a look

Mall
Mall in reply to Callabag64

Have you tried Asda. I had the same problem with Sainsbury’s and Tescos. I couldn’t get a slot with either. I managed to book a slot with Asda 3 weeks ahead, but was able to make this a recurring weekly slot. Meanwhile I have managed to get a click and collect slot. My first home delivery is 9th May.

You need to register with the supermarkets to ensure they have your details, they can then identify you on the government lists. Asda seems to let you book farther ahead than the other two whose sites say no free slots.

I have also found that some small local butchers and grocery shops, farm shops, have started delivering too. Try looking for a neighbourhood web or Facebook site local to you which may list them. Or look there phone number up and give them a ring, Quite a few smaller shops are going out of there way to help, we don’t need to rely only on supermarkets.

It seems more dependant on availability in your area than whether you are shielding or not. It might be worth phoning Sainsbury's

I received a shielding letter on Saturday (25th April) from my GP. I had not asked for one, but when I had my bloods taken the HCA wanted to do an annual review and cardiovascular risk assessment. She said a lot of patients were missing their CV risk assessments due to the lockdown and the staff were thinking of a way to start doing these to avoid a huge backlog. This may have prompted my letter.

Only have RA, no other problems, on MTX, but do occasionally have low white blood count which happened 5 weeks ago.

I think the 12 weeks is a movable thing... mine said from the date of the letter - 14 April and I too had been isolating already for 4 weeks.

The indications are that we will be the last to be freed from isolation - so it may be a very long haul... Gird yourself and make the most of whatever you can.

That is exactly what I said when I received the letter. Even though I knew what it was going to say seeing it in writing was quite frightening. Stay safe.xx

I am in the 12 week lockdown due to a couple of meds I take for RA and have been told by my RA consultant that I have to go into the hospital for my regular 12 week blood test and if I don’t go in I won’t be prescribed my meds all sounds rather crazy but I eventually got it from the horses mouth, man was she annoyed that I was standing my ground surely the choice is mine whether I risk C19 or liver failure but apparently not! To say I am angry is an understatement after seven weeks of lockdown on my own slowly going mad

Can you make an appointment with the practice nurse at the GP? I did that as didn’t want to go to the hospital phlebotomy department as it can be crowded and people let their kids run about. The GP surgery had only one patient in at a time and you had to knock on the practice manager’s window at the side of the building to announce you had arrived and then wait until she unlocked the door to gain entry. There was one lady in reception far away behind a barricade of hazard-tape-d up chairs and high reception desk and the nurse came out for me straight away in gloves, gown and mask. No one came in whilst I was there and I went out alone. Try phoning your GP surgery and see if you can have it done there. (I wore a mask and outdoor light gloves. )

It's a tough decision, not sure what is best. My GP normally does my two monthly rheumatology bloods but have twice deferred it. They agreed my midwife sister in law could do it at home for me then she developed Covid 19 so still not done and I'm really reluctant to go to the surgery . At the moment I'm not mentioning it it until someone else does.

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