PERHAPS THE NRAS CAN ADVISE us on how to find out if we are on the list of those eligible for receiving antivirals/monoclonal antibodies in the event of getting Covid - especially for those (like myself) who have not received a PCR test through the post to keep for if and when needed? I rang 119 as advised by the Gov.UK website and was told that they didn't know if I was on the list! (they were going to send a PCR test to me, but I want to know - should a PCR test be positive - if I will be contacted to receive antivirals/monoclonal antibodies)
PERHAPS THE NRAS CAN ADVISE: PERHAPS THE NRAS CAN... - NRAS
PERHAPS THE NRAS CAN ADVISE
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Jimminey
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There is a very long thread yesterday from Dave about this and couple of others this week too, one of which was from GinnyE which could be useful to you.
Thank you for that Neonkittie17. I think I have read most of the posts, including GinnyE, and (like many of the posts here) have found them very useful indeed.
It would seem that a list of those eligible for antivirals/monoclonal antibodies does exist as some are being contacted directly as a result of a positive PCR test about how to receive them. And, like many others, I would like to know that I am on the list so as to relieve stress and speed up the process of getting the drugs should I ever test positive.
But I have not come across any definitive information about making sure I am on the list, especially as I didn't receive a PCR test without asking for it and I am definitely eligible being on Rituximab.
I will keep contacting my GP and Rheumatology (if I can get through to them) and will be contacting the NRAS also. But rather than getting an individual response from the NRAS, I thought that, as this is a seemingly unresolved and critical issue that affects so many, a post from the NRAS to us collectively would be useful and save time and effort.
I didn’t mean don’t ask NRAS .. I just meant there was a lot of useful info on Dave’s and Ginny’s. Yes, Rtx here too plus other factors and I’m not on the list either. 🤷♀️ I’ll add no more (as it will have been said on the other threads.) Good luck.
Thanks.
Hi, I agree with you, like you I'm on Rituxumab and definitely had it in the last 12 months.
I went to ring 119 today as they guidance says to ring 119 if you have not heard anything by the 10/1, but have just lost the will after having the last few months of constantly having to chase things up.
There's a lot of us who didn't hear anything and no reason why unless our letters are stuck in the post...who knows!
The NRAS webinar on the 22/12 was useful and showed the eligibility of the ant-virals etc but not really about actually receiving the letters as they had only just started going out.
Good luck with trying to find out.
Baffling (or other words) isn’t it?! xx
It certainly is! Baffling and frustrating and, in the event of getting Covid, very stressful I expect.
It is indeed! 😂 xx
Hope you are alright. xx
Thanks.
I agree 3LB…I had a RTX infusion on Tuesday & was speaking to the .Bio nurses who had no idea …so I spoke to 119 who said speak to my GP…..I told the v nice clued up young woman I was speaking to, that their answerphone message said to call 119 for anything to do with .Covid19….…but she still said…. ask your GP.So I emailed to ensure I had written proof of what GP is advising …..& the answer was still……call 119.
So I guess we have to wait & hope we don’t catch Covid…but sort it at the time if we do!
Not at all satisfactory…but I for one am fed up with banging my head against a brick wall for information I really hope I never need.
I must have missed this post which you are referring to, are you able to send me a link as I can’t find it? TIA
I don’t seem to be able to do links. Have a look back 2 days ago for Dave and also GinnyE’s posts.
I contacted my GP regarding this as I have not received any information at all. All the way through the pandemic I have had to contact either my GP, the rheumatologist or the CCG as never received the original notification for shielding ( I inject methotrexate and Benepali and have Adrenal Insufficiency and Colitis so I know that I am at risk of severe illness). I was told in May 2020 that I should be shielding and after that received the letters, texts and emails. But I never received notification that I needed a 3rd Primary vaccination until I contacted first the rheumatologist whose nurse helpline told me I needed to contact the CCG who then told me to contact my GP who then sent me the letter I needed to get the third primary jab. Then I never heard anything about the antivirals and home PCR test. So I emailed my GP - I received an email telling me that the surgery was far too busy to reply to my email and I needed to make an appointment - there are no appointments (even telephone consultations) for 4 weeks! So I emailed the CCG to ask who I should be contacting - that was 2 weeks ago and they’ve given me a damned good ignoring! Although I finally got an email from the GP surgery telling me to contact the rheumatologist because the GP doesn’t have anything to do with this and wouldn’t be prescribing antivirals. So I’ve emailed the rheumatologist nurse helpline and waiting for a reply. I still think they hope we get Covid and will die before they have to actually do anything!
My specialist nurse told me it is the GPs who are dealing with this!
As has happened all the way through the pandemic, the right hand doesn’t know what the left hand is doing! If that is the case (that GPs are dealing with it) once I hear from the rheumatologist, I will be sending follow up emails to everyone as I’m sick to death of constantly having to do other peoples jobs for them. Nobody seems to be able to do the job they are paid to do yet if we applied for their jobs, I suspect we wouldn’t be qualified!
I couldn't agree with you more..it completely wears you to the point you just can't chase anything anymore as you know it's futile, but maybe that's what they are hoping for.
• in reply toBarrister
I can offer short courses in how to be obstructive, aggressive and ignorant if you really want to work as a receptionist in the NHS 😁
That’s my take on it too.But I do wonder….as many GPs have behaved so irresponsibly…..hiding behind closed doors offering various excuses…. how they can reconcile refusing point blank to help vulnerable patients obtain what could be life saving information?
If they don’t know….FIND OUT!
Yes I know they are busy, & probably heartily sick of answering questions patients could get answered elsewhere….but I think they have finally confirmed that patients now have lost all respect for them…& if we were in a country where you had to pay to visit your GP….mine for one would be unemployed.
One wonders whether it could be that the Practice Managers receive the necessary information then sit on it to protect the GPs from being overwhelmed?!
If that is the case …..why couldn’t the practice manager put a message on the answerphone answering popular questions?Eg anyone needing the answer on “how to access the antivirals “
Please call XYZ.
Not exactly rocket science is it?
I just cannot understand why what could be be life saving information ……is treated as a trivial interruption to the GP’s day?
That’s exactly what I’d be suggesting to the GPs if I was practice manager. Would save a lot of time and hassle for practice staff/GPs and patients.
You have misunderstood my comment. I’m not in any way condoning such action if that is what happened. My GP was so surprised when I showed her a copy of the NHS England letter dated 2/9/21 addressed to GPs and other health professionals regarding JCVI advice for 3rd primary doses. She said she had not seen it at all and I left the copy with her.
No I wasn’t in any way thinking you condoned the idea….I must admit I never dreamt Practice Managers would do such a thing….but these days who knows?
Glad you could help your GP 👏🏻
My practice manager was the person who sorted out my CEV fiasco and has been very efficient re other issues in the past. I’m phoning her on Monday. x
Excellent.
I have only been with my practice a few months.I had a very good initial impression…but sadly I now feel it’s all Smiley top show…and when a little extra effort is required….forget it.
That's a shame - I remember you saying initially that you thought they were good. I'm very lucky as my surgery is 🤞
It turned out the doctor I saw that gave the good impression & actually saw me f2f after a telephone consult…was a Locum…..I didn’t know this, so asked to speak to her about results of tests she’d ordered…it was then I found out & was told “she won’t be here again”& I think she took the test results with her so my haematologist had to repeat them…..It all seems so Heath Robinson doesn’t it?
Oh dear, that's not good 😒The wonderful GP who we've had for years left recently but happily I've seen another one since then who I really liked and have seen that he's now down as the "named" GP for both myself and my husband. Hopefully he'll stick around. The receptionists are good too.
Luckily I don’t often need to see my GP…..since I have been on Rtx I now get my infusions on demand & just see my rheumy…so it’s no problem really…I seem to have collected so many consultants over the years…….if I really can’t get to see a GP…& I think do need help…I see one of them.
She’s a rare breed Lola and I hope she doesn't leave! x
• in reply toLolabridge
They HAVE MANAGERS!!!!?
Like yourself I am on benepali and methotrexate. I also have adrenal insufficiency and use prednisolone and hydrocortisone. I’m fortunate that I did get the email and PCR kit, but I do feel for those struggling as it’s not something you want to fight when you have covid. On the other posts I did put some links to letters sent to gps and consultants. I’ll attach the gp one here that you can forward to your gp showing they do have a role, and they aren’t expected to prescribe antivirals. That’s the job of the CMDU consultant. Hope this helpsengland.nhs.uk/coronavirus/...
For anyone needing the one showing consultants their role, here it isengland.nhs.uk/coronavirus/...
I intended to forward these once I’ve exhausted contacting each of the relevant authorities so thanks for attaching the links again. I didn’t want to jump the gun until I have it in writing which of them think is responsible. Then I will be forwarding it all to each of them along with my MP. I’m so tired of fighting and having to justify myself as to why I believe I’m “special”! I would love to be ordinary and not need all the drugs etc.
• in reply toBarrister
Here here
Is it just me or would you say you can’t get clearer than that?
I think the problem is that practices are so busy, that practice managers are probably not fully reading emails, and cascading to the gps. Hence their ignorance. However I’m sure if you attach it to an email, they will deal with it. As you say instructions are clear, and your saving them wasting time researching or plodding through practice emails for the info.
I know they are busy but you think of it once the first person has asked about something then surely the practice ought to be aware of the problem. If you are getting fed up with being asked the same thing over and over then maybe it’s time you investigated. 😉
Problem is this only applies to 500,000 of the 3.2 million CEV. So spread out across the country they won’t be inundated as most of the 500,000 already received their kits. They estimate 10% slipped through the net. So 50,000 among roughly 9000 practices, they are not being inundated, so they don’t see the urgency like we do 🤗
I have received all the CEV letters plus the final one to say that the term was being “dropped” . I have yet to receive the “PCR test + instructions” .I read somewhere online , as you’ve mentioned, that only 500,000 of the 3.2 million CEV would be eligible for the “PCR pack + antivirals”.
However , when I received the CEV letters , there was much made of how dangerous it was for the immunocompromised to get covid , especially if they were on >20mg Methotrexate etc . etc . Wouldn’t it have been better to send ALL CEV people a PCR pack plus instructions . I suppose money was the main factor but it must have cost quite a lot of money to send out 3 months supply of vitamin D tablets .
Despite being CEV I still had to chase up my third primary vaccine through my rheumatologist , although readily given , plus 4 th jab at my local walk-in centre .
The PCR kits aren’t directly linked to the CEV list. Granted most on immunosuppressants were on the list, but people on just MTX weren’t shielded, but they are still applicable for the PCR kit. For most of the CEV they have produced antibodies similar to the levels of healthy individuals, so they are protected from serious illness as much as anyone else. Whereas those on immunosuppressants have not mounted a similar response. The PCR kits are linked to codes regarding your medication, depending on if your gp or consultant prescribe your MTX, I have attached letters on several posts showing your gp or consultant what they need to do. Although it was drummed into us CEV how much we were at risk, for many now with vaccines that risk has reduced considerably, which is why the focus is on protecting the immunosuppressed. I too had to battle for my 3rd dose eventually getting my MP involved, as my daughter was getting married, and I was mixing with 60 guests. Unfortunately didn’t get it till the week after the wedding. You would hope the government would have learnt from the 3rd dose fiasco, but it seems they haven’t. Hope you get sorted soon. Lastly the treatments available are very limited, so I think it’s correct to just send PCR kits to those on immunosuppressants.
You can, I think get a PCR test by phoning 119 and giving your details. If you need to use it you can then register it as per the website instructions so they can see via your NHS details if you are eligible for treatment.
gov.uk/government/publicati...
My husband who has RA and CLL plus pulmonary issues was fortunate to be sent this as he needed to use it and was contacted by a doctor from the local Covid hub and prescribed antivirals which worked well for him.
Thank you for that strongmouse. Very good to hear indeed.
Though on Gov.UK there are 2 different test instructions, and the one for those eligible for the new treatments says you can only register if you have received a letter from the NHS saying that you are eligible. And I believe there are 2 different PCR tests kits (the one for those 'eligible' being, I believe, a red priority test kit).
I rang 119 and have received a test kit, but it is not the red priority one and I have not received a letter saying that I am eligible for the new treatments (though I should have had because I am on Rituximab). I was also advised not to register the test if I needed to use it.
So I am concerned that I may have been missed off of the list for those eligible, and thus will not be contacted for receiving antivirals/monoclonal antibodies in the event of a positive PCR test.
May I ask if your husband received the letter saying that he was eligible for the new treatments, and did he receive the red priority test kit with it?
Yes he did receive a letter. He has been on the vulnerable list since the beginning of the Covid pandemic. And yes the PCR test was red with 'priority written on it.
I can understand your dilemma if you have not been on this list, but perhaps are eligible for the anitivirals / monoclonal antibodies. They don't seem to make it easy, do they!
I don't know if there is anything helpful on this wedsite, which includes eligibility for treatments and vulnerable people -
nhs.uk/conditions/coronavir...
Thank you strongmouse. At least I definitely know now about the priority test kits.
I was on the CEV list but have not received the letter about being eligible for the new treatments even though I know I am eligible - like many others here.
I hope your husband has fully recovered.
Someone posted a link on here which explains who is eligible. From how it reads some will have to be assessed to see how active their RA is, I can't see my hospital having the time to do this. Open......What treatments are being made available for covid 19.
Agree, whole thing is totally frustrating. I wrote to my MP earlier this week, sharing my experiences and frustrations of the ‘am I on a list, what list, do I qualify, why haven’t I heard’ etc etc. I received a prompt generic response but they also asked for a contact number and a convenient time to discuss further both my individual case but also what ‘we’ need. One of my suggestions was a named govt representative who has the immunosuppressed as a focus, ensuring clear info and systems are in place to prevent these inconsistencies across the NHS Trusts (from my generic response, I don’t think there currently is one?). He’s also asked for permission to share my experience with the correct ministerial team. If I get anywhere with it I’ll post!
Good suggestion.
Thank you.
• in reply toHollyhock123
Good luck 🤞🏻
What part of the country are you in? I'm in Scotland and received my letter from the NHS last week with the instructions.
I am in Yorkshire
Me too I'm in North Yorkshire and haven't received a text / letter or anything yhtough the post. 🤷♂️
As many of us have, I have been all round the houses chasing this problem as i hadn’t received the letter or pcr test & felt I had been missed off the list. 119 & rheumatology both said I needed to take it up with my GP surgery. So on my 4th attempt of bringing it up with them they gave me a phone number to ring, which was for a local ‘health department’. I don’t know if this is a new set up or not but they were massively helpful, knew everything about the vulnerable patient list & access to antivirals & have hopefully sorted things, they booked me in for my fourth Covid jab for this Saturday & were going to contact my GP to update them with my CEV status.So hopefully all GP surgeries will now have the number for a local health department for any of us that have been missed off the vulnerable list.
Good luck x
Well I received a letter from my local hospital trust same people who sent a letter regarding a fourth jab It said to order a pcr test to keep at home and then if positive then need to tell gp or contact them so a specific meds team will arrange anti viral if needed .
Hope you get some answers 🤞
My gps say they know nothing about it!
Mine said that I sent copies of my letter to add to my file . Hope you get sorted
I am in the south east and no one knows anything here…….
I am also in s/e and have had no letter or rheumatology contact got myself on vulnerable list at beginning by phoning and then got letters until final one which said shielding ended !!! and since have heard nothing re 3rd primary & 4th booster vaccination so had my booster for 3rd but at end of jan will need to chasebooster and definitely havent had a letter saying I will get anti virals if I get covid I take mtx and golimumab for Ra so am immunosuppressed.
Same here in Essex!Ring doc hospital 111and the answer is computer says NO!
Rheummy gone AWOL had to request meds last week as have not had any contact since 2020. But we are all doing splendidly captain Mainwarring!
Good luck in your efforts but unless you like scuba diving don’t hold your breath 🌺
I’m Brighton had letter from nhs university trust Rheumotology dept about 4th jabs and then last week about anti viral drugs
🤩that is great news
I think it would be incredibly helpful if the NRAS could advise us on this.
I've spoken to my GP and my rheumatology department this week and they've never heard of this, let alone know whether I'm eligible or not.
It's so frustrating and I can't face phoning 119 at the moment.
There's an article about this in today's i newspaper - it's obviously a common problem and Myeloma UK is quoted as being highly concerned. Hopefully the press attention will help to get something done 🤞
We should be so lucky!...the media, including the BBC, are far more interested in arrogant, spoilt so called sports stars who hit a yellow ball back and forth, which pretty much sums up the standard of journalism in this country. So much for the vunerable being prioritised!
I’m emailing Vicky Foxcroft, Shadow Minster for disabled, tomorrow! Just finishing off that today.
Good for you.
Not my MP, but a while back I emailed a member of the Welsh Senedd who publicises the latest covid updates for Wales. Hence I thought she was my best bet about trying to avoid a similar debacle happening with the 4th vaccine as happened with the 3rd. I provided her with a brief rundown of some of the problems we experienced and asked if she could bring it to the attention of appropriate members of the Senedd or whoever she felt most able to do something. She replied saying she had a busy agenda and said her understudy would get back to me, which he duly did a few weeks later merely quoting a paragraph out of the green book of next to useless information about vaccinations and omicron, which I'm not going to waste my or any members time by quoting here. I don't think either of them even bothered to read my email properly.
Hope you have better luck than me.
Vicky Foxcroft has got RA herself and was vocal to Javid recently in the HOC re when antivirals were coming but that was before Christmas. She may point out to them that for the vulnerable, things aren’t running smoothly yet again. Disappointing you got a copied section of the Green doc re vaccines you we’re already aware of and nothing new. At least a reply but not a useful one. 🤨
Thar sounds hopeful. Look forward to her resomse.
I hope she reads it and does something. It’s frustrating to think that each time the immunosuppressed are offered some assistance that a barrier is also there, re chasing up and being meddled around. That isn’t being ungrateful either. Just truthful.
Well, we were repeatedly told by numerous politicians and others that we are, or were, priority so why shouldn't we hold them to their word, or try anyway.
Scuse my typos...some off the lettering on my keyboard has wore off, plus my eyes are well overdue a test. 
Can read it fine, Wish. No problem. I said before that if we are prescribed high spec RA meds then we should be prioritised re the eligibility. If it isn’t brought to the attention of those who are overseeing the process which meds and which conditions qualify them.
I suspected all GPs didn’t get their letters from the NHS as Lola confirmed with hers. You’d have hoped someone had seen the letter and brought it to the attention of the lead GP at least. I know they are busy indeed but this is important.
I’m not a staunch Leftie either but I think she is very credible.
No way would I take you for a staunch leftie Nk. Not that politics come into it anyway,
LOL I know. 😁
I had a similar response from my MP re the 3rd dose, basically brushing me off and referring me back to my GP. I wrote back and told her I wasn’t happy with her response, and expected her to resolve it, the same as other MPs were doing for their constituents. She did then contact the CCG and got them to contact my rheumatologist and insist he sent a letter. Unfortunately he didn’t do it for all his patients, as I gave a friend also under his care. She phoned when I mentioned I’d got my letter, he basically refused saying he was contacting the CCG to say he didn’t have the time. They take an oath to protect and do their utmost to keep their patients safe.
Well done Maureen, perhaps I shouldn't have been such a defeatist. It's no wonder some of us have problems with attitudes like your rheumatologist.
What a disgrace!
His response didn’t surprise me. I have AS but with a lot of peripheral involvement. If I say at my appointment I have issues with any joint other than spine, he refuses to even look and tells me to see my gp before I raise concerns with him. Gp was furious. My gp has been left to investigate my tingling burning hands, he told her to send me to the carpal tunnel team. Had he read my mri which shows a calcified slipped disc pressing on my spinal cord, I could have been referred to orthopaedics. My gp has ended up having to refer me. Sad thing is he’s only in his early 40s but acts like he’s about to retire with his lack of care. Unfortunately due to biologics I’m told I have to remain local, the other one is worse. I had to discharge myself from the other and travel 250 mile to see an expert about GCA symptoms that he ignored. I did have GCA, but she felt it was overlapping with something else. X-rays showed fusion of my SI joints and ribs, she said there were so many red flags for AS, it was a disgrace that in 4yrs seeing rheumatologist I hadn’t been diagnosed. Unfortunately she had to refer me back locally for the urgent biologics. I was an experienced nurse who knew how to work the system, my colleagues kept saying I should right a book 😂🤗
I’m in Scotland and got a letter a few days ago about the Molnupiravir, should I get Covid and want the antiviral. It was a battle to get listed with Gov and NHS in order to be recognised as in the highest risk group viz receiving RTX.My first letter about that came from my local Rheumatology Dept. But they didn’t put me on the system with Gov. I had to call my GP surgery, speak to a GP and request they do it even though they were supposed to know they had to do that.
If you are on the Gov list you should have received updates throughout the pandemic and then the letter about antiviral treatment. That’s how it was in SW Scotland anyway.
It tells you to get the antiviral, if you choose to have if, by the third to fifth day of symptoms beginning. Therefore, get tested fast too!
I'm so pleased to hear that the letters in Scotland are being delivered, I don't have mine as yet, but have received good communication from Scotgov throughout the pandemic, so hope my letter won't be long. Great news.
Rtx here too .. doesn’t seem to register at my GP what that is or even with rheumy admin! I’ll keep trying ........
This is an ongoing issue that NRAS and a consortium of other organisations that work with people considered to be vulnerable are looking into. We will be putting up an article in COVID FAQs regarding this but the basics are as follows.Call 119 and advise that you have not received a letter, if they are not sure you are eligible refer them to the appendix of this document.
england.nhs.uk/coronavirus/...
However this document advises that only the following people are eligible.
Patients with immune-mediated inflammatory disorders (IMID)
• IMID treated with rituximab or other B cell depleting therapy in the last 12 months
• IMID with active/unstable disease on corticosteroids, cyclophosphamide, tacrolimus,
cyclosporin or mycophenolate.
• IMID with stable disease on either corticosteroids, cyclophosphamide, tacrolimus, cyclosporin or mycophenolate.
• IMID patients with active/unstable disease including those on biological monotherapy and on combination biologicals with thiopurine or methotrexate
Check your junk box on your email to see if the letter has landed there. If not, here is a copy of said letter.
england.nhs.uk/coronavirus/...
You can send this to your GP highlighting the people who are eligible.
If still no luck contact your rheumatology clinic or nurse, refer to the first document and ask that they ensure you are on the list of eligible people. This is very important if you fit into the category of unstable disease as this is one point that may have changed since the list was last updated.
We are in the process of working with the consortium to find a next step if all the above has been tried to no avail. As soon as we have an answer we will let you know.
Jimminey• in reply to
Thank you very much Nadine.
Green230461• in reply to
Thank you nadine.
Although this is from ImmunodeficiencyUK, they have contacted NHS England to make them aware that in general, patients have not received their eligibility for antivirals notification/PCR as yet and apparently there is an extension for receiving them. This is only part of the post on the ImmunodeficiencyUK FB.
Black and white text
Thanks. And the word 'frustrating' does keep appearing!
Yes .. certainly is. 🤨
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