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.
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.
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.
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 😊
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
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”
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
🥺😳 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
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 🤗
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.
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 🤗
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/...
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
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.
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 🤷♀️. Take care
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.
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.
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
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.
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 🤗
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.
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.
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.
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 🤗🤞
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
AAAAAAAAGGGG🤯🤯🤯🤯🤯🤯
Intense pain
Benepali, asthma& flu -gasp !!!!!!!!
