Denied Covid-19 Vaccination : 01/05/2023 - Received... - LUPUS UK

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Denied Covid-19 Vaccination

Turquoise-1 profile image
68 Replies

01/05/2023 - Received NHS email to book Spring Covid-19 Vaccination

25/05/2023 - Attended 4pm appointment at our own GP surgery with Husband who has Rituximab IV infusions + DMARDS for his RA (he is immunocompromised). I have SLE (Lupus).

~ On entering treatment room we were met with, “Neither of you look over 75,” & “Have you got your original invites?”

~ Hubby explained he has Rituximab for RA.

The 2 false nail clad, false eyelash wearing, heavily made up, very young HCAs looked at each other & said, “What’s that?” Pronounced it wrongly 3 times, eg “Ittooomemmobby, ubabdibbydab, tixymoxyoba,” …..I asked them if they’d like me to write it down for them….one of them went to fetch a trained nurse.

~ We showed them our appointment bookings on our phones - No this wasn’t sufficient, they wanted to see the actual invitations. Not got them - deleted.

Surely when we booked the appointments, if we weren’t eligible then we wouldn’t have been able to make an appointment?

~ Told me I wasn’t eligible. Hubby said she’s my wife & as I’m immunocompromised, she’s had a vaccination every time I have, plus she has Lupus. We were told the rules have changed & it’s now a lot stricter as to who can have a vaccination.

~ I said, “I’m not standing here arguing about it, nor will I beg & plead for a vaccination, I’m going.”

Made a point of saying to them, if I now get Covid & pass it on to my Husband & he gets really ill, on your heads be it.

Only to be told that if you aren’t prepared to discuss it you how can we give you one?!?! They’d already made it perfectly clear I was ineligible…..

~ I waited outside for Hubby - they got his Christian name & DOB incorrect! He was dumbfounded by the whole experience.

~ As a retired Paramedic who began their working life as a Dental Nurse and have spent many years working in the NHS, I have now renamed it ‘The No Hope Service’….I will not be having another Covid-19 Vaccination ever again - I refuse to be humiliated & belittled in such an appalling way especially as we had organised the entire day around those 4pm appointments. Husband had worked any early shift starting at 6.30am, we rushed to do supermarket shop, walked dog, prepared tea & I’m having an awful flare …..

It all sounds a bit far-fetched but it’s absolutely true - what a shambles …..😷

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Turquoise-1
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68 Replies
Star13 profile image
Star13

I’m sorry you had such a bad experiance today but if you were invited then you should be able to go onto the NHS covid App online and book to go to a walk in to have your booster. Many chemists are doing them. As your record won’t show you have had one you can just enter your NHS number answer the question yes to if you are immune compromised (with Lupus you are) and then follow the instructions from there. You can say you were meant to have it today but didn’t feel well enough.

Turquoise-1 profile image
Turquoise-1 in reply to Star13

Hi Star13

Thanks for your reply.

The appointments were booked via the NHS Covid Booking online; GP surgery do not organise the bookings, it just so happened that this particular Booster Vaccination Clinic was at our own surgery. The invite came from the NHS not GP surgery.

I realise I could rebook it but I am not going to lie by saying I was unwell!

It was not my fault the staff on duty were being so awkward…I presume they were simply following the instructions they’d been given.

Thanks for the thoughtful suggestion though xx

Sarahmac8312 profile image
Sarahmac8312 in reply to Turquoise-1

Sweet heart I was told ring 119 to get a letter to why you are entitled to the booster I have chronic asthma and pain but told I wasn't entitled to it either q

Turquoise-1 profile image
Turquoise-1 in reply to Sarahmac8312

Sarahmac8312

It’s good of you to reply, I appreciate it 🙏

It seems many of us are being expected to ‘jump through hoops’ and having to prove we are eligible. I’d have thought you would definitely would qualify having severe asthma…..Makes no sense to me.

Hope you’re ok, take care xx

sarahsch profile image
sarahsch

Oh Turquoise -1, that sounds like an awful experience 😞. There certainly seems to be a lot of confusion at the moment about who gets the vaccination with NHS invites being over-ruled by NHS employees.

There are of course nice ways to go about breaking this news to the patient & there is what you experienced. I think the NHS has lost its humanity.

Take care,

Sarah x

Turquoise-1 profile image
Turquoise-1 in reply to sarahsch

Good morning sarahsch

Thank you so much for your well-worded reply….confusion indeed!

Best wishes to you x

tjo52 profile image
tjo52

So sorry you both had this terrible experience..inexcusable. I am proud to say I have worked for the NHS for 27 years.would never speak to anyone like this..I don't believe my colleagues would either..I had mine at a mobile walk in..just said I was immunesuppresent..have you anything similar.

Please don't like this experience put you off..I have had a couple of bad experiences with staff treatment however, the rest have been amazing..

Hope you manage to get your vacines OK.. take Care 🌻🦋🙂

Turquoise-1 profile image
Turquoise-1 in reply to tjo52

Hi tjo52

Thank you for your reply.

I am not quick to judge the NHS as I worked many, many years on the ‘other side’ and know full well what it is like looking after, caring for patients whilst adhering to strict protocols and medical practice. I am retired now.

As a patient myself I have had both good & bad NHS experiences and always give praise & credit where it’s due. Yesterday was utterly disgraceful on all levels…..It was to have been my 6th vaccination & my records (which I presume they could see), clearly showed that.

It wasn’t just me they were disputing, it was my husband too!

He’ recently had 2 more Rituximab IV infusions so he’s 100% immunocompromised due to his TNF being ‘switched off.’ (Which it has been for several years since being on Biologics & various DMARDS, etc).

Previously, for me, Lupus has not automatically made me eligible for ‘sooner’ vaccinations, but because of the risk to him, I’ve always qualified for them. Plus, (before he died), I cared for my Dad who had various health issues so I had ‘double’ eligibility!

I do not actually take any Lupus specific medication at the moment has unfortunately I have had severe, adverse reactions to Hydroxychloroquine & Prednisolone plus Anaphylaxis after having a Depo-Medrone Steroid injection ….. I have regular, long-lasting flares & am awaiting further input from my excellent Rheumatology Team.

The information on the NHS Covid booking website doesn’t list Lupus as automatic eligibility, unless certain medications are being taken. However, both myself & hubby received the most up to date Covid testing kits earlier this year - I posted on here about it 🤔….. (I know Debbie Kinsey has looked into all of this & has posted updates for us all).

Warmest wishes 🌸

tjo52 profile image
tjo52 in reply to Turquoise-1

Hope you both manage to get this sorted..I just find the whole thing over complicated and difficult to find the correct information..take care both 🌻🦋

tcogb profile image
tcogb

Sadly I had a very similar experience to you. I was appalled by the behaviour of a Doctor who was called to grill me when I attended my appointment for which I had had an invite (as per all my previous Covid vaccinations) I had my letter from Professor Denton at The Royal Free hospital detailing my conditions (Scleroderma and MCTD) and medication but this Doctor insisted that because I am no longer on immunosuppressant medication (in my case I no longer take Mycophenolate) I was not eligible for the Spring booster despite me getting an invite. She kept talking over me and got very passive aggressive so in the end I challenged her and asked ‘Are you refusing to give me the vaccination?) she then got very flustered and backtracked and said it was my choice. I was so upset and annoyed but I did go ahead and have the vaccination but I was disgusted at their behaviour and the expectation that as you did, you can arrange your whole day around the appointment, travel there (in my case half an hour there and back as I live in a rural location) and then be treated like that, and be denied a vaccination unless you are prepared to literally dig in your heels which was upsetting, stressful and can push you into a symptom flare. If they have moved the goal posts for the Spring Booster then why have they blanket invited people they now deem not eligible? Causes stress and time wasting for all involved, patients and staff. But no excuse for rude and dismissive behaviour from staff. I was upset for days afterwards 😔

Turquoise-1 profile image
Turquoise-1 in reply to tcogb

tcogb

Good morning to you,

Goodness, gracious me reading your post has made me feel ever so sad. Thank you for taking the time to reply.

I sincerely hope recalling & recounting it hasn’t caused you too much distress 🤗

Having Lupus or any other illness/disease is bad enough in itself with how many of us have to explain it etc, so no wonder you were so upset. I agree with all that you have said.

All the very best to you 🌸

SecondLife profile image
SecondLife

I had a similar experience, was told that as I am not 75 they cannot give me the vaccine, they wanted the original letter which I didn't have, gave them my medication list and eventually they decided I could have it. Yes it feels like we are begging but why invite us in the first place if we are not eligible

Turquoise-1 profile image
Turquoise-1 in reply to SecondLife

Oh dear SecondLife,

It really doesn’t make sense?!?!

I appreciate your reply, thank you 🙏

marypw profile image
marypw

I’m 69 and only on hydroxychloroquine, but I got the booster despite thinking that I wasn’t eligible. The staff just said to me that if I’d been invited I got the jab. I’ve also been sent tests and a letter saying I could be eligible for treatment if I get a positive test. There is obviously a lot of confusion around this!

As Star says above, I would try rebooking on-line - mine was done at a village hall. Hope you get it somewhere x

Turquoise-1 profile image
Turquoise-1 in reply to marypw

marypw

Thank you x

I’ve just come back from a blood test at my GP surgery - not the practice I attended yesterday which is nearest to home, but at a ‘sister’ practice.

The reception staff there today flit around the 5 practices within the group, but they weren’t at the surgery I went to yesterday as they have half-day closing on a Thursday, except for Covid/Flu Vaccination Clinics. (The reception desk is closed up at lunchtime on a Thursday & the Covid staff roam around the waiting area guiding patients), so the usual reception staff had left by the time I got there at 4pm. ….. If you’re still with me after that epic explanation, I’m impressed, 😂…...It all adds to the frustrating confusion!

Both myself & hubby have been to various locations over the past few years for vaccinations….

Anyway, the receptionist I spoke with today told me she’s only had 2 Covid-19 Vaccinations and isn’t having anymore….just makes me wonder about it all. After yesterday’s fiasco, I decided to not have another.

Neither myself or my husband have ever had Covid (not to our knowledge), nor had any adverse effects following the Covid vaccinations either.

I am beginning to think that even the NHS do not know how to deal with it all and are in a state of confusion themselves!

Kind wishes to you 🌸

marypw profile image
marypw in reply to Turquoise-1

Yes, if you’re a ‘frequent flyer’ with the NHS, it can all drive you a bit bonkers. My jab was my 5th, but it will be my last as I had a very dodgy tum afterwards!

Best wishes and stay well xx

Crawford1961 profile image
Crawford1961 in reply to Turquoise-1

hi personally I wouldn’t have it too many people dying from It !! My brother had it in December started feeing unwell within a couple of weeks died Feb 6th of blood clots on the lungs 😥I’m convinced the vaccine was the cause .

Turquoise-1 profile image
Turquoise-1 in reply to Crawford1961

Crawford1961

Thank you for your reply,

Condolences on the death of your brother 🖤

StriatedCaracara profile image
StriatedCaracara in reply to Turquoise-1

I had Pfizer last week - local chemist just asked me to name condition. Nothing else, no proof even though I took a letter.

I had to drive to another town to find a vaccinating pharmacy.

Knew the system was being less managed and it was just being left to those who give vaccine to decide one way or the other. They could decide based on what they got from vaccinating us.

Anyway Day 3, suddenly on standing up got breathless, pains in chests,palpitations, worse on breathing deep.

Believe the vaccine gave me pericarditis. My earlier Pfizer jabs were fine. So a bit strange.

Being good and doing what instructions from last year said. (No leaflet this year) I tried to get medical help.

Of course it was the weekend, hopeless contacting 111, ring back within half an hour but clinician then refers to local 'out of hours' and believe I would have spent the rest of the day - (i) waiting for a call from another clinician (told another two hour wait) and then (ii) in A&E.

Took things into my own hands. As stress made symptoms worse and I needed to rest, not worry.

I took 300 mg soluble aspirin as I did when AstraZenica caused the worse headaches of my life and shortness of breath, doing even light housework. This seemed to help, I hate to think what caused the reaction. Nothing had got in the news yet, though other countries reported issues.

We have our own wisdom at the end of the day particularly when there are not others who we can rely on.

After a rubbish reaction to Gadolinium used in an MRI before Christmas (nothing included on risks in the literature I received), I think I have lost my trust in everything. This forum is one of the few places I find truth.

Even with the antivirals I think interests are trialing not in treating. We need to get back to patient-centred care.

I feel it is a bit murky out there, so it best to wise up and share truth with one another, so we can balance things up.

Thanks Turquoise. Your post has helped us do this.

Turquoise-1 profile image
Turquoise-1 in reply to StriatedCaracara

Hi StriatedCaracara

Thank you for your information about being able to get a Covid vaccine, I appreciate your reply.

So terrible you suffered such awful side effects and your body reacted so badly & frighteningly.

I personally think 111 is a load of rubbish and a poor substitute for a quick response face to face assessment either from a GP or 999 crew. As a retired Paramedic I dislike that 111 is promoted as the ‘go to’ for virtually everything; I’d encourage anyone, especially in the situation you found yourself to dial 999.

An A&E 🚑 crew can bring a variety of equipment to thoroughly check a patient and then make a decision, (if the patient is conscious & is able to agree), to go to A&E. Poorly patients taking themselves to hospital or waiting hours for a response from 111 or a GP is totally unacceptable, dangerous and definitely not patient-centred care.

My trust in many areas of NHS medicine/services is also not what it used to be; Once upon a time I was a firm believer in putting my faith and belief in medical professionals who knew more than I did, but over recent years my confidence has taken a battering for various reasons.

I agree that this forum is a good place to get realistic facts from like-minded comrades who don’t sugar coat some of the diabolical, shambolic happenings in their NHS ‘care.’

I really hope you’re feeling better now, but you may need to get yourself checked out if still not alright….

I’ve had 2 exasperating, stressful, distressing and infuriating consultations over the past week with 2 different GPs at the practice I go to, so I completely understand your reticence in seeking their advice & ‘expertise!’ I avoid contacting them wherever possible, which isn’t how it should be at all.

Thanks for your kind words & all the very best to you 🌻

StriatedCaracara profile image
StriatedCaracara in reply to Turquoise-1

I had a appointment with my rheumy yesterday. As covid cases so low in the summer, he encouraged me to do 'risks versus benefits exercise' which for me, suggests that leaving vaccination to the autumn may have better approach anyway.

The emails and letters I get relating to covid vaccines and antivirals I find scare me. I think they only served to confuse me this Spring.

Two days on 300mg aspirin worked a treat with pericarditis..think it was mild.

Pfizer vaccine though has caused flare, other things also got worse.

Balancing things up is hard.

I recently joined the PPG at my local surgery. That has been a good thing.

Take care. Hope things come together better soon. 🌸 I really like the flower emojies, so may use these too now..

Turquoise-1 profile image
Turquoise-1 in reply to StriatedCaracara

Just for you ~ 💐 ~

StriatedCaracara profile image
StriatedCaracara in reply to Turquoise-1

I don't think either of the 111 people I spoke to were sufficiently trained. Even the person who called themselves a clinician did not relate to things. I had to keep reiterating and explaining again and again.

Concerned that current recruitment may not be capturing those with sufficient expertise.

There is a lot of sugar coating going on, suggesting we should have confidence to still go immediately for their advice when so often they prove incompetent..🌻

Turquoise-1 profile image
Turquoise-1 in reply to StriatedCaracara

You’ve summed up my sentiments perfectly! …. I’ve had first hand experience of their incompetence.

I thought 111 was a really bad idea when it was first introduced, several years later it has a terrible reputation & I’ve not come across a single person who’s had a positive experience using it.

‘Clinicians’ & ‘Advanced Practitioners’ seem to be the new buzz words…My surgery has several but I refuse to speak to/see most of them; When ringing to make an appointment the call-taker invariably says, (when I ask who it’s with), “One of our clinicians.”

I always ask what their background is & what are they trained in, if I don’t get a full explanation, I ask for a GP appointment.

Some are physios, mental health nurses, paramedics, pharmacists, general nurses & Drs from abroad who are doing additional training to UK standards - all cheaper options brought in rather than paying more GPS.

All these extra staff within a GP practice = ‘too many fingers in the pie,’ which in my experience has lead to inadequate communication, confusion & bad feeling, with me the patient suffering the most.

GP demands letters from Rheum consultant in order to prescribe specific recommended meds but the same GP expects me & other patients to see/speak with ‘clinicians’ who aren’t as qualified as GPS; Double standards in my eyes.

Nice chatting, you have excellent insight & intuition 🙂

Stills profile image
Stills in reply to Turquoise-1

you are right about the NHS, it’s in a total brain fog about vaccinations, appointments, eligibility, prescriptions and responsibilities. If I say any more we will all be having a flare 🤯

Turquoise-1 profile image
Turquoise-1 in reply to Stills

Stills

You’ve summed it up perfectly! Thank you 🙂

Chris21 profile image
Chris21

the most shocking thing is it’s your GP surgery! I’ve lost faith in the nhs and wonder what the future holds. They say that they are making our details accessible across the nhs to make it easier but seems to be making it a complete shambles. Who decides you are eligible for vaccine? You’d think your GP or consultant not some great god In the sky! I went to an appointment at the pharmacy, saying I wasn’t sure and the reply was, if you’ve received an invite that’s good enough, jab done. If you feel you need a spring booster, please don’t be put off and do what others have suggested. Do the invite again at another establishment.

Turquoise-1 profile image
Turquoise-1 in reply to Chris21

Chris21

I absolutely love your reply, it’s really made me laugh and smile 😀

Thank you for your honest thoughts about it all, you share many of my sentiments.

The medical professional in me knows it makes sense to continue having the vaccines but I cannot abide the inconsistencies regarding the information, treatment & care. I have lost faith & trust in some aspects.

I’ve recently discovered so many mistakes, inaccuracies, untruths and errors on my online notes system used by my surgery and also on my Care Summary Record. Therefore, I have opted out, (for now until it’s all amended), of the sharing of medical information & have agreed to only my medications being openly shared.

I have asked the Practice Manager to rectify the many errors - Ensure it is correct & true or leave it off! False information is very misleading to other NHS departments etc. Quite often a trained medic can ascertain a patient’s health/medical issues from the meds they are prescribed anyway.

Kind regards 🌸

Stills profile image
Stills in reply to Chris21

please tell me how to contact the ‘great god in the sky’ I bet he can get me an appointment at the surgery 😜

Chris21 profile image
Chris21 in reply to Stills

I would gladly share, if only I knew 😂😂😂 try ‘a wing & a prayer’ while hanging on the end of the phone. 😉

dg70 profile image
dg70

I just had my jab I have lupus and sjogrens. They gave me a printed sheet to look at as I was under 70 and asked if I fit any category. Lupus was clearly written about 7 rows down so no problem. This was at a community town hall temporary centre not a gp surgery. You may find it better to rebook at a chemist or temporary vaccination centre they have this nhs list of qualifying medical conditions from the NHS. Although your surgery should do as well. Very odd.

Turquoise-1 profile image
Turquoise-1 in reply to dg70

dg70

Many thanks for your reply, I agree it is, “Very odd.”

Yes, did read the NHS list of qualifying medical conditions which was sent to me via a link on the invitation email from the NHS, prior to booking my appointment online. There were indeed several locations to choose from, but we selected our own surgery because it’s within walking distance and the time slots fitted in around hubby’s shifts.

Regardless whether or not I qualify as a non-medication taking Lupus sufferer, I believe I should have received the vaccination yesterday due to my husband being immunocompromised and I’ve had one every time he has to hopefully diminish his risk.

Best wishes 🌸

dg70 profile image
dg70 in reply to Turquoise-1

Yes the laminated sheet just said lupus nothing about what medication you're on so you should have qualified in your own right. Hope you get one soon.

Turquoise-1 profile image
Turquoise-1

Here’s the link that was on the invite which I read prior to booking.

It does say that on attendance a member of staff will ask some questions, but that happens every time anyway.

england.nhs.uk/covid-increa...

lupie46 profile image
lupie46

Sorry you had a terrible time. I have Jabs as I have SLE and am on mycophenolate, but my friend who has SLE and doesn't take immunosuppressants isn't allowed one.The NHS and GP practices are all in meltdown!!

Turquoise-1 profile image
Turquoise-1 in reply to lupie46

Haha, lupie46

I think you’ve hit the nail on the head! …. Unfortunately it’s often the patients who suffer at the end of it all 🙃

Summerrain14 profile image
Summerrain14

I am so sorry how badly you and your husband were treated. There is no excuse for this appalling behaviour. I have recently had the spring booster as on medications like your husband for both lupus and ra, steroids, DMARDs and a biologic. I was given my spring booster with no issues due to being immune compromised but my other half was not allowed to have the spring booster despite us living together and my other half mum has terminal cancer. The staff doing the vaccines were so apologetic that my other half can’t have the spring booster and we’re telling us how strict the government are being with the spring booster. Crazy as you say as I am still in the higher risk group if I got covid and my other half mum having terminal cancer. We understand that with my other half mum we don’t live in the same household but we would not forgive ourselves if we caught covid and passed it to his mum. We are both really careful of course but no matter how careful you are that doesn’t mean we won’t get covid. Of course we would never go near his mum if we had any symptoms of any illness including covid or anyone else but my other half and I live together so seems odd not to offer this to everyone in the household. I have no useful words, I wish I did but wanted to reply to your post to say how sorry I am to hear how badly you and your husband were treated, x

Turquoise-1 profile image
Turquoise-1 in reply to Summerrain14

Summerrain14

Thank you so much for replying, just hearing your story is helpful and very useful in itself and I greatly appreciate your kind words.

It would make more sense if I hadn’t received an invite from the NHS as I didn’t request to have the vaccine alongside my husband.

I’m baffled by it all!

Sending you all warm wishes with all that you’re dealing with x 🌸 x

chrisj profile image
chrisj

I had to take proof of eligibility and popped a letter in my bag listing health problems.

I rang our gp when word came from the NHS to have the vaccine and it said I'd need proof, but they weren't giving the vaccine. I found a local church online offering them, booked and got an e mail a few days before saying they'd have to cancel as not enough vaccine so I rebooked online at the same place and was able to go the second time to get it.

I wouldn't say we were greeted with warmth, it was all very matter of fact. No one was bothered about the letter of proof, didn't need to see it. They did ask about blood thinners and I had to make sure they knew about those. Unless you're too angry/ upset to try again I'd urge you to have another go...

Turquoise-1 profile image
Turquoise-1 in reply to chrisj

Hi chrisj

Thank you for your helpful suggestions, sounds like you had to jump through a few hoops to get yours!

Not angry/upset just dismayed and exasperated by all the inconsistencies….

I won’t be risking putting myself through that fiasco again, so if I ever do change my mind & decide to have another, it will be whenever my age group gets an invite.

Thanks for the reply 🌸

Suvi8901 profile image
Suvi8901

The whole system for covid booster vaccinations ELIGIBILITY is completely flawed and broken!

NHS and government do not want to know.

Officialdom and dumb bureaucracy rules but who actually understands them????? …..🤣🤣🤣🧏‍♂️🧏‍♀️🧏😰😱 Everyone is tied up in knots.

Turquoise-1 profile image
Turquoise-1 in reply to Suvi8901

Suvi8901

Thanks for your great reply - I’m nodding my head in agreement 🙂

peppa profile image
peppa

That’s so awful!! It is true that a lot of people get invited that aren’t entitled but the point is, once you show why you’re entitled, there should be no question. I had an invite and it said if you’re not over 75 but are immunocompromised, bring a letter showing your condition or a recent medication packet. I had my vaccine on Thursday and a very young lad checked me in and asked to see my proof. He ticked it off and I took a seat. When I was called through, the pharmacist doing the vaccination said “ you’re obviously not 75 or over ( joking) but would you mind telling a little about your diagnosis “ I told him I have CTD and lupus, and he held up his hand to stop me and said “ soon as you said lupus that’s all I needed to hear, the guidance has changed and lupus is on the list “ So, the nurse was right, the rules have changed but they’ve changed to include Lupus, so she needs to go back and read her own guidelines properly. You are absolutely entitled to a vaccine in your own right let alone because your husband is vulnerable. How dare she treat you like that and how dare they give roles to people that clearly aren’t properly knowledgeable! That includes the young assistants too!! Shocking that you’ve been let down like that and I urge you to fight for yourself to be protected, although I fully understand how you feel. Take care x

Turquoise-1 profile image
Turquoise-1 in reply to peppa

Many thanks peppa for your kind and supportive reply, also for sharing your experience too.

I am no shrinking violet, indeed I am very assertive so that’s why I took control of the situation I’d been unfairly & wrongly cornered into by the 3 vaccination staff.

It was clear they were not listening to me or my husband when we both said that I have Lupus - there was no way they were going to back down; They were hellbent on being right & I realised very quickly that they were being quite petty, vindictive and enjoying the fun of asking such ridiculous questions regarding the original NHS invite and pronouncing Rituximab as unintelligibly as possible. If they’d have asked for it, I could’ve shown them my diagnosis letter from my Rheumatologist.

I refused to have a full scale row about it as I would not allow myself to be dragged down to their tawdry level and unprofessional standards; They made themselves look very amateurish & foolish.

I chose to quickly nip it in the bud and act in a mature & sensible way before the situation escalated into a bigger fiasco than it already was.

After my husband came out, he said the trained/senior nurse was rather embarrassed, flummoxed and couldn’t get out of the room quickly enough once she’d given him the 3rd degree regarding his medical history & the say so for him to have his vaccination. He got the sense that she realised she’d messed up …..

Wishing you well 🌸

peppa profile image
peppa in reply to Turquoise-1

I really admire you. It’s really easy to get into a full scale row and as you say, sometimes you just have recognise that you just shouldn’t waste your mind space or energy on those kinds of people. As we all know, stress makes us very poorly. You absolutely handled the situation with grown up class 🫶

Turquoise-1 profile image
Turquoise-1 in reply to peppa

peppa Thank you ☺️

StriatedCaracara profile image
StriatedCaracara

Wondering if there are local pharmacies doing drop in covid booster clinics. I decided to try there rather than GPs given what I'm reading.

...success rate may be better there.

peppa profile image
peppa in reply to StriatedCaracara

I had mine at a small local pharmacy. I think you’re wise to take that option if you can

Turquoise-1 profile image
Turquoise-1 in reply to StriatedCaracara

StriatedCaracara

Thanks for replying.

Yes, a pharmacy would be an option, it just so happened that my GP surgery happened to be on the list of venues where the NHS Booster Clinics were being held. It made sense to attend this particular one as it’s near to home & fitted in with the shift my husband was working.

The Covid Clinic staff on duty for this clinic weren’t the usual GP surgery staff who I am familiar with. In fact, as it was a Thursday afternoon, the reception was closed as it’s half-day closing for my GP surgery & staff.

We have had previous vaccinations at various locations.

Hopefully if you do decide to go to a pharmacy, it will be undramatically successful! 🙂

suwinter profile image
suwinter

Hi there, so sad that you were treated in such a disrespectful way - and by your GP practice too!

I am immunosuppressed and have had every vaccine and booster offered. However, my under-75 husband has only had some vaccinations at the same time as me. The staff at the vaccination centre explained very nicely that, as he has a ‘normal’ immune system, the effects of his vaccines will last at least 6 months so he does not need to be vaccinated more often. There are obviously some risks every time someone is vaccinated and they don’t want to take unnecessary risks with his health. We felt this was a fair point. They said that he will get a further vaccine at my next appointment.

I do always make sure that I have the letter from my Consultant telling me that I am immunosuppressed and need to have a 2nd primary and boosters with me, but I haven’t been asked to show it at my last 2 appointments. If you are immunosuppressed but no longer have your original letter, you can obtain a copy by speaking to 119.

Take care,

Turquoise-1 profile image
Turquoise-1 in reply to suwinter

suwinter

Morning, thank you for replying.

The fact that I received an NHS invite to book the Spring Booster, (and had recently been sent the latest Covid-19 testing kit plus instructions on how to obtain anti-viral medications), makes the whole situation even more bizarre!

Providing a person hasn’t ‘opted out’ of sharing ALL health information with other care providers, their health records are visible to other NHS departments via their NHS number. I’m assuming this includes the Covid vaccination staff, although I’ve never actually asked them…..

There are various ways of obtaining letters about ourselves, some being much easier than others (another story there!), but I do actually have all mine. Others may not be aware of 119, so that may be useful to them.

Best regards to you 🌸

Stills profile image
Stills in reply to Turquoise-1

119? What service do they provide please?

suwinter profile image
suwinter in reply to Stills

Hi Stills,

Here’s some info from the NHS site: nhs.uk/nhs-services/covid-1...

Stills profile image
Stills in reply to suwinter

thank you

Turquoise-1 profile image
Turquoise-1 in reply to suwinter

Thank you suwinter , you got there before I did x

Turquoise-1 profile image
Turquoise-1 in reply to Stills

Stills

See reply below from suwinter

The information regarding 119 was included in the NHS Spring Booster invitation I received…..

KayHimm profile image
KayHimm

Hi Turquoise -

It took me fifteen minutes to see what exactly qualified as immune compromised here in the US. It sounds like crazy over there too.

The definition doesn’t look like it has changed since the first vaccines. Biologics are on the list. I would see if you can find UK guidelines. But I think that nurse was plain wrong. And I read immune compromised people’s vaccine doesn’t last as long. They do need the booster! High dose steroids is also on the list,

Tell the nurse long, polished nails are not hygiene.

XxK

Turquoise-1 profile image
Turquoise-1 in reply to KayHimm

KayHimm

Hi 👋 from across the waves……

Thanks for your humorously written reply, which made me smile.

I was concerned about the false eyelashes too, as well as the nails! Definitely not allowed in my former medical careers…..

Kind regards 🌸

KayHimm profile image
KayHimm

Biologics are on the list of medications. Took a while on the NHS website too!

Good luck with this. Such a shame you had to go through this.

Turquoise-1 profile image
Turquoise-1 in reply to KayHimm

KayHimm

Thanks for your research 🧐 x

Maddymay65 profile image
Maddymay65

Dear Turquoise-1

So sorry to hear of your horrible experience, I have no answers only my support , they were so disrespectful to you and must have been upsetting .

I would have done exactly the same and walked. I would however be tempted to book an appointment with your gp or practice manager or write a letter and make a complaint . Their behaviour must have consequences.

Take care and stay safe

M x

Turquoise-1 profile image
Turquoise-1 in reply to Maddymay65

Maddymay65

Thank you for your thoughtful words of support & suggestions.

I never experienced anything like that at any of the other Covid vaccinations I’ve had….Nor has my husband!

Kind wishes back to you x

Bluebell999 profile image
Bluebell999

What a shambles. When you are 100% certain that you are right and the poorly trained receptionist argues you are not, it is so incredibly frustrating, I totally get it.

I had my spring booster, (7th now) last week and hubby who is my full time carer has had three. I am not sure why they exclude him, I do explain each time but just get a shrug.

All of my jabs have been in different locations, I just wish they would stick to the same place and staff and then I wouldn't have to justify my eligibility.

All my health records are "open" so easy for them to check on their computers.

I showed them my invitation, and confirmation of the appointment but it was not enough. I told the nurse my list of autoimmune conditions including APS, but saying I have SLE was not good enough. I then had to tell her my list of medications, she wasn't interested in Warfarin or prednisolone but when I said hydroxychloroquine she almost jumped off her chair, she was so happy I had "passed" the requirements.

What is it about hydroxy which makes us eligible but not other meds like steroids or Warfarin?

Fortunately apart from a sore arm, I don't get any side effects, although the first one, Astra Zeneca did leave me ill for a week.

I have been unknowingly in the company of friends who had covid and I am sure when shopping and waiting at a crowded checkout there must be someone with it, as you don't have to isolate any more. It has become very noticeable that fewer masks are being worn, except at the hospital or doctor'surgeries, so either I am incredibly lucky or the boosters are working.

Good luck for when you finally get your jab, lets hope everyone know why you are there!

Turquoise-1 profile image
Turquoise-1 in reply to Bluebell999

Bluebell999

What a shambles indeed!

Having to justify yourself in the way you had to do by showing them this, that & the other turned the whole vaccination process into an unpleasant interrogation.

It seems I am not alone as you, your husband & others have had similar experiences….. We are patients not criminals!

Interestingly my Consultant Rheumatologist asked me if I’d been ok after Covid vaccinations because I’d had severe adverse reactions to Hydroxychloroquine, Prednisolone & Anaphylaxis following a Depo-Medrone steroid injection. Neither myself nor my husband have been ill after a Covid vaccination - just a sore arm which, I’m always glad about as it’s a sign my body is doing what it’s supposed to after having a foreign body stuck into it!

Yes, I agree Covid is lurking everywhere, with some people being unaware they have it. My local hospital has now stopped requesting patients and visitors to wear a face mask; obviously they can if they choose to.

Hand-washing, prevention of cross contamination and minimising cross infection was something I had drummed into me when I was training to be a Dental Nurse 42 years ago. My subsequent Dental career followed by becoming an Ambulance Paramedic instilled a deeply ingrained ethic that ‘germs’ are invisible and spread very easily. That stood me in good stead when the Covid-19 pandemic hit as it was what I was accustomed to anyway; frequent hand washing is second nature to me as is keeping a safe distance from others wherever possible.

Hope you & your husband continue to remain Covid free & enjoy good health as much as possible x🌸x

BonnyB profile image
BonnyB

Look up local walk in clinics on nhs site. I went to one of these these after several reminder emails and texts telling me I needed this booster.

I'm on hydroxychloquine, had the email and LT tests through posts regarding antivirals.

When I went the Dr said mmmm... you dont qualify if you are just on hydroxychloquine. I said nhs have repeatedly been messaging me.

I did also have a letter stating my neutrophils count is extremely low and to seek medical attention if I suspect any infection.

So he gave it me on that count, but it did make me feel like a fraud.

I really hope you get this treatment x

Turquoise-1 profile image
Turquoise-1 in reply to BonnyB

BonnyB

Oh my word, being made to feel a fraud after all you’d told him is so unfair….seems like ‘they’ are diminishing Lupus, RA (+Biologics), UCTD etc, etc, etc & many other inflammatory diseases which is shameful.

I wonder if people with other autoimmune diseases, various medical conditions, those considered to have weakened immune systems, in the ‘at risk group,’ those taking certain medications/immunosuppressants have had difficulty getting their Covid Spring Boosters? The full list is on the link I posted further up in this thread; It isn’t the easiest read! ……

Thanks for replying & telling what you went through x🌸x

BonnyB profile image
BonnyB in reply to Turquoise-1

It's a minefield, my husband tested positive yesterday, I'm negative so far but feel awful so I'm grateful I did get it in the end x

Turquoise-1 profile image
Turquoise-1 in reply to BonnyB

BonnyB

Oh no! 🤕

Wishing him a speedy recovery and you both restored health 💐

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