sorry for such a moan but I am a RA patient with co morbidities Methotrexate high dose etc so not sure how vaccine has worked and Husband is Transplant patient with co morbidities both Immunosurpressed husband very vulnerable and has had hospital antibidy test that shows hardly any response, so still CEV at great risk and in our area they have not got there act yogether with antivirals! without NRAS and Kidney Uk and others fighting our course and help and advise I would of given up, but My Gps and Rheumi have not helped or advised not interested! in CEV never acknowledged us !? I sent a letter to GPs n Rheumi which I have only spoken to briefly and in 2 years, with need of being checked ! cant wait any longer asking what extra protocols they could do or are going to do when we are visiting and I got quoted by both that the government now says there are no CEV ! and basics continue to wear masks! I could not believe it my other team nembers Occup therapy and physio at local hospital were shocked and have asked to see me quickly going into side entrance as not seen them and things will only get more risky now, I only asked to make sure the staff understand Immunecomoromised patients and wear there masks properly and to let us wait in car parkn have a call before entering as our Gps a big busy medical centre where we go for bloods etc as the staff have been seen without masks hanging off there face and nose as they speak to you or take blds,! the vaccine centre localy the GPs did no thought for vulnerable it was so stress full and unsafe! has anyone else got such awful Gps surgery, hospital consultants with no empathy and such a bad attitude for us !? they certainly are not like the lovely clinicians who care in Nras webs .
Don't feel safe anywhere: sorry for such a moan but I... - NRAS
Don't feel safe anywhere
Good morning trace58.Sadly you are not alone in feeling you have been abandoned…many here feel exactly the same as you.
Unfortunately I don’t think there is anything easily available to patients to get any more help than is presently forthcoming …most of us have tried every avenue we can think of - to find an answer & now have decided not to stress ourselves any further banging heads against the proverbial brick wall.
Hopefully your doctors will rise to do their job …..should any emergency arise.
Plus of course we also have to think of those newly diagnosed with all sorts of serious conditions …..who are unable to get any treatment or the surgery they desperately need.
But in your situation, rather than continue getting really worried & anxious…..why don’t you give the NRAS Helpline (0800 298 7650)a call on Monday to see what they are advising people like you to do. I’m sure they are having to give this sort of advice frequently…& may be able to settle your mind just a little.
I tell myself I haven’t contracted Covid so far….so the way I have been living for the last two years, including a very stressful house move must be OK.
I hope you can enjoy a peaceful weekend.
I'm sorry but don't get this I have CKD function GFR 27, RA, etc etc and am on medications which suppress the immune system, and to be frank the NHS and my GP have been great. I've now had Covid and got offered the antibody infusion the same day. It worked very well and the virus never really made me ill in any way. I'm sure your husband has access to his Nephrologist who can ensure that he has access to the treatments as he must have been offered the Melody study to see if he had antibodies. If it helps I didn't have many either but the virus is treatable and so life must return to a new normal for the great majority of people. I think now if the Queen in her highly protected environment got it then its only a matter of time before everyone gets it no matter what precautions are taken. I think you could contact the NRAS but your husband should contact his Nephrologist for advice but it may just be that is all you can do is do your best to protect yourself but the rest of society has to return to some sort of normality as its too damaging to continue with some measures for children and people who really are now not at risk.Its sad and I don't know where you live but its not unorganised here but very well organised indeed. I believe that the instruction in medical situations is masks still but of course that is up to you now as no one has said you can't wear a mask so what is now the difference. Life has to go on and I sympathise with you in worrying about the what if ? but the reality is we have to live with this virus now and I'll get the 5th jab and if the virus mutates then measures can of course be reintroduced anyway.?
I’m really, really glad that you have had such excellent treatment ML….but a lot of us haven’t been as fortunate.As you know…. my attitude is you either get Covid or you don’t…I’m careful, but I don’t stress about it. I have had my three Primary vaccinations…the first two ghastly, the third absolutely fine. I have to wait for No 4 as tests prove I have zero antibodies, so no point yet.
My Rheumatologist insists that being old & on Rtx…I should be included on those eligible for the anti virals, & I did have the NHS letter before Christmas…but nothing from my GP…..
All I want my GP to do….is what my rheumatology consultant requested in his letter the consultant writes to your GP after a rheumy check up.He even explained this had to be done by Primary Care as hospital consultants have no means to do it.
The answer was…from “Reception”…..as if that was a clinical position . It read ”I am sorry you are being given the runaround by 119…but anti virals are nothing to do with us”
No explanation why…..so virtually telling me “So now go away”.
I then sent the relevant para from the letter from NHS England advising GPs the action they need to take…but still no acknowledgment from my practice that GPs do have that responsibility.
The next day I got a phone call from a woman describing herself as some sort of clinical adviser….not from the GP number.., who appeared to have no idea what disease I have, what Rtx is & in fact when I asked if the practice had agreed to put me on the list to contact the CMDU should I test positive…she didn’t seem to know what I was talking about.
The conversation ended before I got to ask her to put everything in writing.
I really don’t think I am being unreasonable….I’m not accepting the “nothing to do with us” answer….& although 119 have been very efficient in altering my vaccination status….the boss of the lady who answered my question …just point blank said I don’t qualify…& I don’t choose to have a discussion with that person.
Doesn’t that make your wonderful treatment sound unbelievable to me?
I wrote to my GP and rheumy just before Christmas and got replies a month later. I got the standard NHS letter typed to me etc and signed by my rheumy. The GP letter was from the practice manager to say I have spoken to your GP ..... etc and she agrees due to ..... you will qualify for antivirals, so guess some GPs will do it and some not. 😑 Some people on here have said it’s their rheumy team and not GP who will organise the liaison re anti virals. Very frustrating times. Rituximab and age 80 plus doesn’t qualify you?? 😳 Is this as you don’t take another RA med or that your RA is deemed under control (as that’s often at a price )as I know re zero vaccine antibodies and hypogamma causing comorbidities. Doesn’t always mean everything is rosy as your RA is under good control. 😑
The NHS letter to GPs simply states ”GPs will not need to prescribe or dispense nMABs or anti vitals, however your practice might need to refer higher risk patients to the local COVID-CMDU who can access eligibility & arrange treatment”.That is what my consultant asked her to do should I test positive ….not me…I just asked if that had been done….& that was when I was told it was nothing to do with them.
Little did I think when I moved house it would be out of the frying pan into the fire GP wise!
Varying responses from so many GPs. Yes I’ve read the letter advising what GPs should do re liaison with CMDU. We’ve seen a mixed bag of experiences on here.
That is exactly what happened to me and f you don't have confidence in your GP who is not following the NHS advice I'm not sure what you can do apart from change GP or write to the practice manager and lodge a formal complaint.
I have ensured things won’t get too out of hand …..I have found the number of the localCMDU …& I found you can self refer.So I will hold fire…….changing GP now could entail being asked ….why so soon ? So a formal complaint would not look too good.What I would really like to know is why this practice is refusing a consultant’s request……when they know nothing about my condition. After all…..putting a name on a list is hardly going to be brain surgery, now is it?
But should things look like getting out of hand I won’t keep quiet……I wouldn’t take chances with my health for fear of upsetting the lady!
It might just be a lazy GP or a disorganised one. But until you need the treatment then its unknown really. x
I was very fortunate in that my GP took responsibility for organising my fourth jab on my behalf after all l I had from Rheumatology, in responseto my questions, was a generalised letter to all patients and no help at all. I did have a letter telling me to order a PCR kit to keep at home, but again that was a generalised letter to all of their patients. Reading Trace's message and your follow up message, AC, is making me feel very grateful.
Fortunately my husband is on the CEV list and when he got Covid in January he was contacted by the local NHS Covid Hub as soon as they were notified of his positive PCR test. I guess if you are not on that system you would need to ask GP to notify them so that you can receive preventative treatment within the first 5 days. They did check what his symptoms were and knew his medical history as the service is based in our local hospital.
I know that the treatment is expensive and a limited number available, but prevention is the best course if you need it. My husband has multiple illnesses including pulmonary fibrosis and the antivirals were amazing.
My rheumy consultant wrote and asked my GP to ensure I was on that list.I asked & GP said nothing to do with me……call 119….did that….told to call GP.
I then copied the letter to my GP she should have received from the NHS setting out what GPs are required to do…..reply came back…..from GP “Reception”…….I gather the GP reads neither consultant’s letters..nor those from the NHS.Maybe she doesn’t have a secretary?
The letter said…….
“ Sorry you are getting the runaround ….,,anti virals are nothing to do with us”
But I did try.
well your alright jack you have had it! gad antivirals but my husband has been told he probably would not survive it even with antivirals that is my anxiety quite simple !!
Yes ……as my rheumatologist put it…”there ain’t no pill for old age”!So I’m going to try to prove him wrong….
I think everyone who needs the medication should get it…but the main problem seems to be..,,who chooses who those people are…& if whoever has to lift a finger to action that choice…is willing to do it!
Mind you…..there are people in the world today who have much worse problems…so for now let’s be thankful we live where we live.
Trace. Read my Evusheld reply. There is hope. There are many people shielding and in an anxious way. Not easy. I am one. No antibody vaccine response due to Rtx and hypogamma plus other. Have a look on Immunodeficiency U.K. Facebook for updates on Evusheld.
My mum visited the nephrologists and was under their care. She had diabetes etc, and even though the building she went to was only next door to the hospital, and five minutes walk away from her docs surgery any changes in mums meds took at least 3 months or more filter down to mum. Mum was not even on their priority care list when the pandemic hit and even after she had only just come out of hospital, I had to fight tooth and nail for her to get the first covid jab as she was going to have a medical team at home. In the end about two weeks later she had yo back into hospital. She came out into a care home, after four days she was rushed back to hospital, this was in the middle of March and she passed away shortly after. Even then with me and my sister in law, both choosing to be with her for the week she died, me and my sister in law are both immunosurpressed, she had had a chest x ray without our knowledge and after four days of being with her, when we'd been told we could kiss hug her etc, we were told the factor who came in that it could be pneumonia or of course it could be covid. I will never forget how devastating that was. Me and my sister in law both sat there in total shock, because we'd been told that as we were in the same room with her and she had tested negative previously it was fine to kiss and hug her we wore masks and gloves when people came in etc. The thought of my poor dying mum having inadvertently infected us and people who were coming in and out of the toom daily was just unbearable, unthinkable after everything we'd been through. As our husbands were bringing supplies to us, we had only been allowed outside to sit with them. We were told on that day we had to ring them, tell them to stay in, but were not allowed to tell them why. We couldn't understand this as its not as if they did not know about mum and the pandemic. After the longest hour of our lives we were told she was vlsar if could and that it was pneumonia, bug I will never forget it and it always makes me wonder. At the time she did ho into the home for the short period 4 days, we were always told o we'll keep you in the loop, you'll be informed they never did, and we weren't told what hone she was going into and never had say choice in the matter, it was appalling. Sorry for the moan and long post but I felt this is something people need to know.
Should read doctor who came in the room and should read clear of covid. Flipping predictive text!
I'm sorry for your loss and the tragic circumstances but unsure what you think went wrong and if it did why don't you make a formal complaint. It's not a perfect world and a lot has gone wrong for lots of people but by no means all. So I'd say you should contact the relevant area health authority, the GP and probably the Health Ombudsman. I feel your pain but if you don't complain then nothing changes. I can only speak from experience and have had excellent Renal Care and that may be to do with function but my disease is stage 4 so not good at all. The virus has wrecked havoc everywhere and sometimes things go wrong but you can make your voice heard so lessons can be learned in the future.
Because previously they had told us it was safe to kiss and hug her, then after 4 days of her being there, this doctor comes in to tell us the results of an x ray that no one informed us she'd had! As well as the fact that after us being told we could kiss and hug her, and all the staff knowing we were both immuno suppressed they then suddenly told us she could have covid. That was after people had been in with tea/food trolleys, instead of leaving them at the door and just letting us know they were there. We did know covid was a possibility, but it was just the communication breakdown. I suppose you could say it was mine and my sister in laws choice to go in but one brother couldn't go in because he was too ill, and another didn't want face it. I didn't want to leave mum on her own, only two of the family were allowed in for that final week. We were lucky in that.
The government said at the end of 2021 they had ordered Evusheld (prophylactic/preventative injections) and I do think they have done so but are waiting for its approval (by the MHRA I think) to be used here in the U.K. Several countries already have it approved and in use. It’s given as two injections and is made from the plasma/B cells of recovered covid patients. It is hoped to be a life changer for people who have had zero response to the vaccines or low response and are severely immunosuppressed. However, there will be an eligible cohort to receive I am sure just like with the antivirals.
PS. Your husband as a transplant patient, would be high on the list to receive it but it will be harder for us to qualify for it unless on the higher spec RA meds and comorbidities.
Hi Trace, i see that you are very stressed (understandably), so I just wanted to give you some information that may reassure you, at least a little. I have a friend who has had a double lung transplant, and many, many other comorbidities. She had virtually zero antibodies after her jabs, but caught COVID late last year. She contacted her transplant specialist who arranged for her to go to hospital for an antibody infusion (she was one of the first in the UK to get it) and she was then sent home to recuperate. She had relatively mild symptoms, in the end, whereas one of her relatives with no known health issues was very unwell. So the treatments clearly work. Fingers crossed that neither of you catches it, though. Also, I actually paid to to test my antibody levels myself as I am on 20mg of mtx, so just missed out on the third primary jab. After the first 2 jabs I had low levels of antibodies, but after the booster I did much, much better. But it is also worth remembering that the immune system is complex and anitibodies are only one part of it. Even if your husband has very low antibody levels, he may still have SOME immunity.... Hope this reassures you a little xx
I am so sorry you have such poor vigilance around you. If it is any consolation I have just tested positive and the next day was given an antiviral infusion. I have a number of issues as well as RA including severe asthma and was given a priority PCR test to use if I tested positive on a lateral flow test. If you do not have one for you and your husband I suggest you ask for one so that at very least you would be able to get help quickly. We have really been abandoned by the government. I am just praying that the antivirals work quickly. I am in terrible pain all over and just praying that I don’t end up in hospital again, I already had Long COVID and severe asthma. It seems the asthma gets more attention than anything else and yet I am a whole person not just a set of body parts. Anyway the priority PCR test seemed to be the ticket to get antivirals quickly. I don’t know what else to suggest. We are being left out of all future Covid plans as the virus has gone NOT! I wish you and your husband the very best of luck.
Just to let you know that PCR tests are no longer required to access antivirals. I’ve just had antivirals prescribed on just my lateral flow test result which is even quicker. I had a positive lateral flow test yesterday, I phoned 111 and asked for a referral to CMDU (Covid Medicines Delivery Unit). I had a phone call back about 20 minutes later confirming that I was eligible for treatment and to say they were doing a referral to the CMDU at my local hospital. I had a phone call this morning from my local hospital to check what medications I was on to check interactions and to arrange a prescription for me to be collected from the hospital pharmacy. (They said they could arrange for it to be delivered but if I could find a friend to collect it would be quicker).
Can't say I've had this experience. Got my 4th vacc this week all safe and had bloods at Gp, only change there was no questionaire at the door. I'm was on high dose mtx, 20mg pred and a biologic when I got covid and luckily was not that bad. I've had it in the house four times with the kids having it and not got it and I work with the public daily.
Having had it I'm now no we're near as worried and tbh a bit annoyed that at the start we were all scared sh*tless and now you and lots of others are having all this perfectly understandable anxiety.
I know you're situation is different to mine but I just wanted to post in the hope you could see that plenty of us have not had an awful experience with covid and you could be ok too.
Take care.
The referral came before the positive PCR test result. I had a monoclonal antibody infusion.
Have to say I'm fighting to get even telephone calls, from consultants. GPS say they are doing face to face appts but every time I've asked its been a telephone call. E consult doesn't always work, especially if you put stomach pain through urine infections which they know i have a history of. Feel like I've been abandoned by not only the gvt, but GPS as well. Even when I had f2f appointments I still had to fight to get the treatment I needed or blood forms were another bone of contention, the doctor always said its the responsibility of the hospital to send you the forms as they've requested the test. When I spoke to the hospital I was put back to the doctor. Very poor communication all round and one emergency room doctor told me, just because there is a pandemic, does not mean that you should expect to receive a poor level of care and it sounds yo me like you are that's disgusting and I'm so sorry, the medical system is letting you down.
E consult is a nightmare and our GP's did use it for a while but it was cancelled before Christmas. I think they had hundreds of complaints. We can get same day emergency phone calls and the doctor decides if it's necessary to go into surgery. It's not perfect but so far I've been lucky and not wanted to see anyone. I did complain about 111 though it took 3 days to get a prescription for antibiotics so I wrote to MP and GP. I didn't need to see a doctor it was a UTI. Result GP rang and I've got a pack in the cupboard for the future. The NHS does seem to be on its knees so we also joined the Benenden Charity for hospital needs if the waiting list is too long and I've seen a private consultant for another minor but annoying problem. I do really believe we are being forced to go private and that's ok for some but far from ok for the vast majority of patients. Covid I think has just made a hidden agenda by the powers that be easier to bring in.
In fairness to your GP & rheumatologist, the risk stratification they were asked to follow does not put patients on a single immunosuppressant such as methotrexate in the shielding category. I’ll attach the chart they had to follow
rheumatology.org.uk/Portals...
The same is true for access to treatments where you have to be on a steroids or certain immunosuppressants ir biologics. Methotrexate only qualifies if taken along with a biologic. The full criteria is on page 13, under immune mediated inflammatory disorders. Your husband however would qualify as he is a transplant patient
Hopefully it might clarify your Drs comments
england.nhs.uk/coronavirus/...
Boris didn’t remove the restrictions because covid had gone, he did it to save his own skin. It is now up to us to keep ourselves safe. I do understand the anxiety, evidence has shown that patients on MTX as a mono treatment show a good response to the vaccines, mounting good level of antibodies, protecting you from serious illness and hospitalisation. Hope that reassures you. Take care and stay safe 🤗
That's reassuring Tracey. I would be interested to find out I'd produced antibodies. Due to have a 4th booster on Tuesday. I yold my sister-in-law this, she has lupus and she said would you want to find out if you'd produced antibodies? I questioned it at first then thought may she thinks I'd be more worried if my antibody results were low. I'm on infusions of Remsima, as well as prednisone, sulphazalazine, and metho.
What to wear .....
NRAS statement on the breaking news regarding the Pfizer Vaccine
The unforeseeable future
