Another update saga continues /Update antivirals 🀬... - NRAS

NRAS

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Another update saga continues /Update antivirals πŸ€¬πŸ€¬πŸ€¬πŸ˜΅β€πŸ’«πŸ’©πŸ’©πŸ’©πŸ€―πŸ€―πŸ€―

β€’67 Replies

Ok …. Recieved a phone call at 12.30 please can you get here for infusion at 2.30. Clinic an hour away had to get hubby out of work to take me. Arrived in car park at 2.25 phone rang appointment cancelled come tomorrow at 11. Waste of time / petrol. I exhausted now and feeling shit .

I’ve written this post twice only to be lost in the ether. Happening a lot.

Told by clinic if test positive then ring 119. Did that they said if hear nothing in 24 hours ring 111 did that. Eventually a clinician contacted me . Took all my details ( disease, meds, allergies) did this on all phone calls over the last 3 days. Told the antiviral clinic closed over the weekend and to ring 111 in the morning. Did that , after going over everything told only deal out of hours as Gp open ring them .. eventually got through no appointments went through it all and said I will come to the surgery even though I have covid if I don’t get a phone call. Promised Gp will ring . Gp rang was lovely but tdon’t prescribe antivirals need to wait for antiviral clinic to contact me . Asked her to chase as I have no contact number or email address. She did and eventually a call handler rang . Had to go through everything and spell it . Oh you are complicated she said . Then said guidelines changed and just because you were told you are eligible might not be the case. A clinician will view your records if you don’t hear in 48 hours your not eligible.

You can’t make it up .told her no one else knows about these changes.

honestly give me strength.

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67 Replies
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Lolabridge profile image
Lolabridge

Oh no that's awful and I understand totally your anger and frustration.

I was sent some updated information by my Rheumy department and it included these links. I've not read them fully but it might help.

gov.uk/government/publicati...

england.nhs.uk/coronavirus/...

in reply to Lolabridge

Thank you . Inflammatory immune diseases is on the list .

Lolabridge profile image
Lolabridge in reply to

Have you tried contacting your Rheumatology Patient Helpline or rheumy Nurse?

in reply to Lolabridge

Yes they told me to ring 119. Will be ringing again tomorrow morning

GinnyE profile image
GinnyE in reply to Lolabridge

I may be wrong but this seems to read that you only qualify with methotrexate if it’s for lung disease.

I got the antivirals around 21st May, just because I was on methotrexate, according to the clinician.

Confused.

in reply to GinnyE

Confused is right

Lolabridge profile image
Lolabridge in reply to GinnyE

I think I saw that document was updated in June

Evie3 profile image
Evie3 in reply to Lolabridge

I spoke to RA nurse last Tues and she never mentioned any changes πŸ˜΅β€πŸ’«

medway-lady profile image
medway-lady

Are you feeling ill? as I thought there was a time limit so the antivirals only work if you get within 5 days of infection.

in reply to medway-lady

I’m not great . My cough is getting worse I hurt all over even my teeth. It doesn’t help with the heat or the fact I’ve been off my meds for a week as advised by rheumatologist due to hubby having covid . Tomorrow will be 5 th day of symptoms but 4 days since I tested positive.

Madmusiclover profile image
Madmusiclover in reply to

You are ok to get them up to 7th day of symptoms.

Boxerlady profile image
Boxerlady in reply to

Hope that you feel a bit better today πŸ’

in reply to Boxerlady

Thank you . Unfortunately looks like I’ve got a chest infection. My Gp won’t supply antibiotics unless seen . Won’t see me because I’ve got covid . Back on the roundabout.

KittyJ profile image
KittyJ

I was told the same, I was referred for antivirals by my GP and then told I would hear if I was eligible. The repetition of questions when you’re really unwell pee”d me off a bit, I know they need to make sure they’ve got everything correct but it was still annoying, but I was coughing in his ear so that was probably annoying for him 😊

in reply to KittyJ

That’s was me πŸ˜‚

KittyJ profile image
KittyJ in reply to

πŸ‘πŸ» πŸ˜‚

Mmrr profile image
Mmrr

Oh, I'm so sorry to hear this.

Monkeysmum profile image
Monkeysmum

What a palaver, absolutely the last thing you need when you are ill. Hope you have more luck tomorrow xx

Pippy25 profile image
Pippy25

So sorry to hear you are having to go through all this. Sounds like the left hand doesn't know what the right hand is doing. Hope you get something sorted out and you begin to feel better soon, take care xx

Brikel profile image
Brikel

Similar experience to my wife.She had a positive test on Wednesday and received email saying she may get antiviral medicine.

Jumped through the same hoops and eventually received a phone call on Monday morning by which time she was feeling a bit better.” So you don’t need them now”

End of phone call

Jackie1947 profile image
Jackie1947

What a palaver. I got them because I am on a biologic drug. Need to be taken within 4 days of onset.

Evie3 profile image
Evie3 in reply to Jackie1947

So am I but told not ill enough

Jackie1947 profile image
Jackie1947 in reply to Evie3

Blimey! My medication dictated I was entitled to it. I was then placed in a virtual covid ward and was pinged twice daily to send over my oxygen levels. I live in the South West of England

Evie3 profile image
Evie3 in reply to Jackie1947

I was told mine would (on Rituximab) but in reality it didnt! I am in South East

in reply to Jackie1947

Is there no one Authority in our NHS it’s all made up

Peacox profile image
Peacox

πŸ₯ΊπŸ˜³ that’s mad. I’m so sorry you e been through all that. What a mess. Ugh. I feel I’m forever jumping through hoops to get the basic care I need. And this sort of thing on top is so exhausting. I hope you get well soon x

Pippy25 profile image
Pippy25 in reply to Peacox

Sadly you have summed up exactly how I am feeling, just getting the basics is an uphill battle.

Runrig01 profile image
Runrig01

I agree it frustrating and you shouldn’t be having to run around. What I noticed with the new guidelines, is that tnf inhibitors don’t automatically qualify. Apparently recent evidence is showing they don’t result in severe disease. On the section re IMID the section re biologics refers you to a footnote no 8, where it states those on tnf inhibitors along with other immunosuppressants, should be the decision of the physician. The physician will be the Consultant at the CMDU unit, as GPS and specialists can only refer you to be considered, but have no authority in the issuing of them. I hope you get answers today, and that your not feeling too rough. MTX was listed initially as being included in combination with biologics, but now it’s only MTX taken for interstitial lung disease. It’s all been changed quietly, so most won’t realise they no longer meet the criteria. 🀞for you πŸ€—

GinnyE profile image
GinnyE in reply to Runrig01

I see. Changed on the quiet. So I wouldn’t have got the anti virals now. How are we supposed to hack our way through all this. Medics obviously can’t keep up.

Runrig01 profile image
Runrig01 in reply to GinnyE

I agree, most medics are unaware of the changes. It’s always still worth trying, as it dies say physicians discretion for those on more than just the tnf πŸ€—

TNF inhibitors
in reply to Runrig01

Thank you Maureen for knowing everything as per usual. Much appreciated.

Runrig01 profile image
Runrig01 in reply to

Your welcome, and thank you. I have just uploaded a link with contact details of all local CMDU units who are responsible for the antivirals. I’d suggest taking a screenshot of your area, as these links often disappear quickly, presumably when they get overwhelmed with enquiries. digital.nhs.uk/coronavirus/...

Boxerlady profile image
Boxerlady in reply to Runrig01

Thanks - made a copy πŸ‘

sylvi profile image
sylvi

WHat on earth do these people do all day. I hope you feel brighter soon.xxxx

Fra22-57 profile image
Fra22-57

When I had covid I got telephone call to say I didn’t qualify to be given the anti virals even thou I am on biologics and had previously got letter to say I did.Annoying

Evie3 profile image
Evie3 in reply to Fra22-57

Mentoo!

Joannos profile image
Joannos

I tested positive as well. Rang 111 as was told, had to go to hospital as fever and rash were a concern. Sent home from there your fine just Covid. Received call Sunday confirming vulnerable status and nothing. The drugs are only viable for 5 days. Anyhow I think I am on the road to recovery.

in reply to Joannos

It’s shocking the way we are treated. I’m on MTX and Baricitnib so do qualify. Glad your on the road to recovery.

Joannos profile image
Joannos in reply to

Your on same drug regime as me πŸ‘

Sheila_G profile image
Sheila_G

Oh what a shambles. No wonder you are frustrated.

Biofreak profile image
Biofreak

For goodness sake what a palarver. You couldn't make it up! 🀬

Evie3 profile image
Evie3

All of what u said just happened to me too! Such a rigmarole to get thro! I hung on for 45mins for 111. We were doing what we were told to do. Like u the person who rang me yesterday, which was my day 4, said there are specific guidelines as to who gets the antivirals…and it wasnt me. In actual fact I havent been too bad having both RA and asthma. But I was told the virus often hits u harder after day 5…which is today for me. So far so good🀞. I think having had Rituximab back in January has hopefully replenished my immune system πŸ€·β€β™€οΈ. Take care

Lolabridge profile image
Lolabridge in reply to Evie3

If you had Rituximab in January I would have thought you do qualify as it was less than 12 months ago. Have you spoken to your Rheumy? The problem may be that the Rituximab is not showing on your GP record as it is a hospital administered drug.

Evie3 profile image
Evie3 in reply to Lolabridge

I got the letter from NHS re antivirals once i uploaded positive test but the NHS lady said i wasnt ill enough πŸ˜΅β€πŸ’«

Lolabridge profile image
Lolabridge in reply to Evie3

Ah yes I think it’s probably important to upload the positive PCR or LFT result and the latter must be an NHS supplied test not one that has been purchased.

Ozzy profile image
Ozzy

I known how you feel, been there and I was told I qualify but somewhere between doctor and pharmacy my prescription got lost! By this time day 5 had passed and I had no energy left

Green230461 profile image
Green230461

What a mess! Your five days are probably up so you won’t get anything. Get better soonπŸ€Ήβ€β™€οΈ

Purpled profile image
Purpled

My sister in law is on extremely vunerable list and has been sent antivirals in case she gets covid. πŸ€·πŸ»β€β™€οΈ

in reply to Purpled

No consistency!

Deeb1764 profile image
Deeb1764 in reply to

Don’t tell me you are shocked πŸ˜‚

in reply to Deeb1764

You could write a best seller on this

Runrig01 profile image
Runrig01 in reply to Purpled

Is she in the U.K.? Guidance is it is only issued if you have symptoms and not improving, as well as meeting immunosuppressant criteria. It is completely separate to the CEV list.

Criteria
Purpled profile image
Purpled in reply to Runrig01

Yes in UK. DOes not have covid but was sent antivirals just in case from her hospital consultant NHS

Runrig01 profile image
Runrig01 in reply to Purpled

Wonder how he managed it. It would make sense for all eligible to have been issued them, on an incase basis. Rather than all the palaver at the moment. I enquired if this was possible a month or 2 ago, my father in-law had died in Spain, and I asked if they could be issued for travel. I was told no and referred to the criteria which I attached above. I’m on 5 immunosuppressants, so decided not to risk catching covid by travelling for the funeral. The rest of the family went. Thankfully my mother in-law is very aware of my risks and agreed I shouldn’t attend πŸ€—

Purpled profile image
Purpled in reply to Runrig01

She came out of hospital for the umpteenth time with chest infection in March/April time and these were sent to her just in case she got it. She does have a whole host of health issues and hasn’t been out since this started.

Mmrr profile image
Mmrr

How are you feeling today ?

Apart from being 😑🀬 at the antiviral runaround

in reply to Mmrr

Not a good day think I’ve got a chest infection .

Thanks for asking

Deeb1764 profile image
Deeb1764 in reply to

Need something can you get antibiotics?

in reply to Deeb1764

Well… Gp only gives antibiotics if seen but can’t see me because I have covid. Said keep and eye on it after your antivirals which has now been delayed. Round and round we go.

Mmrr profile image
Mmrr in reply to

😒

Deeb1764 profile image
Deeb1764 in reply to

Do NRAS have any idea what system should be?

in reply to Deeb1764

I don’t have the energy to go through it all again. Might enquire when on the mend.

Deeb1764 profile image
Deeb1764 in reply to

Copy and paste the thread and email when you get the energy!x

in reply to Deeb1764

πŸ‘

Pippy25 profile image
Pippy25 in reply to

So sorry you have had to experience this and when you least need it too. Take care and hope that you feel better soon. xx

wishbone profile image
wishbone

So much for the immune-suppressed recieving priority as was repeated ad nauseam by politicians etc throughout the pandemic. I always thought they weren't being sincere, so no surprises there, at least not to me there isn't.

Runrig01 profile image
Runrig01

You definitely do qualify with your current meds as your on a jak inhibitor. I have found the national directory for CMDU units. You can contact them yourself, if you received letters and emails they should flag you easily. If not many are good at chasing GPS or specialists for the necessary referrals they need. Think this will be the quickest way, as your running out of time. Good luck πŸ€—πŸ€ž

digital.nhs.uk/coronavirus/...

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