Third vaccination for the most vulnerable - LUPUS UK

LUPUS UK

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Third vaccination for the most vulnerable

CSLO profile image
CSLO
25 Replies

Just a follow up to previous discussions and this BBC article from a few days ago.

bbc.co.uk/news/health-58763476

And this from the the Royal College of Physicians

rcplondon.ac.uk/guidelines-...

I'm wondering how many of us have been contacted yet re the third jab? My consultant has informed my GP of my need for this third vaccination and my GP has responded that they have had no NHS directive and have no plans in place yet. I'm in SW London.

What's your experience around the UK? Anyone had discussions with their docs about this?

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tremarel profile image
tremarel

Yes had my 3rd jab here in Wales .Waiting few weeks to see if I’ve built up any antibodies.

CSLO profile image
CSLO in reply to tremarel

Good to hear it tremarel, I've heard of a few in Wales and Scotland. Fingers crossed that it super boosts your antibodies!

tremarel profile image
tremarel

Thank u . Hope u get yours soon.

Cathyan profile image
Cathyan

I’ve had mine but I suspect it’s only because of the coincidence of a Rheumatology telephone appointment 2 weeks ago meaning my GP got a prompt clinic letter specifically saying I was eligible for the 3rd primary dose. Otherwise it’s the over 80s who are getting their booster jabsat the moment. North of England and a Newcastle consultant.

Teaspoon13 profile image
Teaspoon13

I have my booster tomorrow. I was contacted by NHS by email and text. I live in Somerset UK

CSLO profile image
CSLO

Really pleased to read your posts Cathyan and Teaspoon, it's good to hear that this is being rolled out around the UK. Hope it goes well for you tomorrow Teaspoon.

I really need a steroid jab to ease a flare which doesn't want to calm but can't have it til after the third jab. Consultant knows but we're waiting on the GP. Just a waiting game now!

sickandtired72 profile image
sickandtired72

I am on 2 immunosuppressants and was on extremely clinically vulnerable list and told to shield. I live in England. My GP practice says they have no role in delivering 3rd vaccination and I had to ring 119 to get appointment - rang them and they said no 3rd vaccination available on the system and so to speak to my GP. Sick of being pushed from to the other and neither can help. GP practice said they have coded me to say I should receive 3rd vaccination and they have lots of patients like me who should be getting it but don’t know how to access. I have emailed 10downingstreet and Dept of Health and even copied in bbc news. No response from any of them. Currently have Covid symptoms feel really ill and waiting for PCR test results. Really really hope it is negative. My husband who is 51 and has no underlying health problems can get his booster. I am 49 should be getting one but no one knows how??

CSLO profile image
CSLO

Oh I'm very sorry to read this sickandtired, I feel your frustration. I think that if we could sit back and be utterly sure that all was in hand and confident that we hadn't been left off of the relevant list, it would be easier to deal with.

I suspect that our NHS boards aren't in sync with this, there is absolutely no action plan here it would seem. I was left off the priority list with the first round of jabs and sat back as instructed, waiting to be contacted. It was only a chance conversation with a GP that gave me the opportunity to enquire. I was then given the jab the next day!

I wish there was a central body we could contact but there really appears not to be, well not here anyway. My consultant has instructed my GP that I am on the extremely clinically vulnerable list and that I must have a third jab followed by a booster shot at some future date but the GP knows nothing yet. What to do other than sit back and wait again?

I'm sorry you feel so unwell. There is a very nasty cold circulating that is mimicking Covid, that is wiping people out around here, maybe that is what you have. Either way, I hope you are able to fight it off quickly. I wish you better.

Barney08 profile image
Barney08

I’m in South Yorkshire. I had exactly the same experience as Sickandtired72 to begin with, going to my GP surgery and being told to ring 119, doing so and being referred back to my GP surgery. This time I asked to speak to a Practice Manager because the receptionist kept insisting they were only giving out booster jabs and I wasn’t eligible yet. When I finally got to talk to a manager to explain that I needed a third PRIMARY vaccine she asked whether I’d had a letter. I said, ‘Yes, I received an email letter on 27 September from the Health Secretary referring me to the JCVI advice of 1 September which clearly states that as someone who is on more than 1g of mycofenolate per day (and has been for 13 years) I need a third primary jab now.’ It worked because I got my jab the next morning.Very frustrating that we have to go through this to get essential health care. I haven’t seen my rheumatologist in person for 2 years now, my last telephone consult was late January so I should have had my next in July. I rang the hospital in June and July and was told both times that

I’d get a letter soon. When I rang again in August I was informed that my rheumatologist had left the hospital in late June and they were awaiting a replacement. To date there is still no-one in situ.

CSLO profile image
CSLO

Oh well done you, Barney. So glad to hear you had your third jab, hopefully you'll be better protected now.

I spoke with my Practice Manager so I don't think that will work for me. I have the relevant letter etc but no action plan for the jab.

I totally appreciate that everyone is super busy and I really don't want to be a nuisance but I don't feel confident that I won't be forgotten again.

Very few people are wearing masks here now. Despite the TFL directive to passengers re masks, few are wearing them. I really would feel a little more protected with this third jab inside me!

Fredwinston19 profile image
Fredwinston19

I managed to get a letter from my consultant quite quickly saying I needed the 3rd primary dose but then no-one would administer it. Both GP & 119 said it wasn’t them. I’m a physio so patient facing but wasn’t on the trusts list as my consultant is another trust. After a few weeks of chasing I found a local vaccination hub where an extremely helpful nurse agreed to do it with no queries. So had it a week ago. Then yesterday received a text from the trust where my consultant is based to book through them. Have been told I will be contacted again in 6 months for the booster, if they decide this is necessary. Hope you get yours sorted soon 🤞I’m Somerset based.

nicholson27 profile image
nicholson27

I’m in Dartford, Kent. When the 3rd primary dose advice came out I contacted the immunology consultant at Addenbrookes where I am treated for my GPA. He replied and said to forward his reply to my GP as it had guidance saying that I need the 3rd vaccine.

No response from GP after 3 weeks and let’s just say I’m not holding my breath. The normal vaccine booking system just says I’m not due any more vaccines so it’s the usual story. You try to help yourself and get nowhere.

As the results of the OCTAVE study showed that patients like me with ANCA associated vasculitis who were treated with Rituximab showed no response to the first 2 vaccines, it is just a case of shielding and hoping that the disease doesn’t get me before the vaccine is finally offered.

sarahalice profile image
sarahalice

Hi. Had mine here in the Midlands UK on the 25/9. Organised by my GP, when I spoke to my specialist last week, she was glad I had, had it as they haven't their letters out yet.So grateful I've been lucky, sounds like it's but a nightmare for some.

Wishing everyone all the best x

CSLO profile image
CSLO

Well once again it seems like it's a bit of a lottery! We can but keep trying.

I can't find a vaccination hub here that is even doing booster shots much less third jabs. The big hubs seem to have been dissolved. There was once a phone helpline that could advise but that doesn't seem to exist anymore. I even emailed the NHSE but they just responded stating the JCVI advice which of course we already know.

London was slow off the mark with the first jabs so who knows when this will happen. In the meantime..................... we wait!

heatherevans28 profile image
heatherevans28

Yes, had mine last week here in Glasgow, Scotland. Third covid vaccine in one arm and flu jab in the other. Quite a few side effects for me but hopefully it'll be worth it. Bit of a postcode lottery but it's being arranged by the health boards in Scotland this time instead of the GP surgeries so it's done at the testing centres, whereas the first two vaccines for the extremely vulnerable were done by GP. Most of the lupies in our local support group have had it done or got their letters now.

Fourth jab looks set to be in 6 months.

Hope you hear soon.

CSLO profile image
CSLO

Glad you've had it done Heather. Scotland seems to be ahead of us down here in London, well done to them for being so switched on!

lynne2496 profile image
lynne2496

My GP contacted me to ask if I wanted the 3rd dose and when I said yes they said I had to go to my local hospital for it as the mass roll out for the 50's and over woud not start until october in my area.

CSLO profile image
CSLO

Where are you based Lynne? Good for your GP for being ahead of the game!

Whippet_lady profile image
Whippet_lady

Bit of a shambles here. I got a letter yesterday for my flu jab which also said that I would be given my covid booster at the same time if I was eligible. No mention of a 3rd covid jab so I phoned the vaccine helpline who told me I needed to go through my GP. When I said that we've been told not to phone our GPs (they put a big post about it on facebook) and that if I did phone I couldn't get past the receptionist she took my details, about 5 times, said she'd look into it, but it was really up to my GP, and get back to me. She hasn't got back to me yet so I don't know if I'm to turn up for the flu jab or not as there has to be a gap between that and the 3rd jab.

I spoke to the nurse about it this morning when I went for my bloods. She said I should get the 3rd jab, that the 3rd jab is a full dose and the booster is a partial dose and that there should be at least 7 days between flu and 3rd covid jabs. She understood what's what. Pity the rest of the health board and the covid helpline don't appear to!

I'm in Scotland, btw. I had problems getting household members jabbed too. They ended up getting them later than they would have done on the normal list!

CSLO profile image
CSLO

Whippet lady, I was told by my consultant that the dosages are the same for the Pfizer third dose and the booster shot. It's being called a third dose because they are recommending the three doses and then a later booster as the protocol for those immunosuppressed and extremely vulnerable. In your position I'd grab the opportunity to get the booster if you're having the Pfizer jab. I think the other booster vaccination being offered is a reduced dose (Moderna??)

I'm going round in circles here today trying to chase this up. Consultant says GP has to expedite it. Rang 119 who says they can't help as GP has to expedite it and just spoken to the GP practice again and they say they have no info about booster shots and when and if they are doing them. I've just returned a response explaining that it's not a booster shot and it doesn't have to be six months after the second, just eight weeks. I've also included a link to the JCVI advice. Awaiting a response now.

I really wouldn't bother but I could really do with this steroid jab to calm this flare.

Poshcards profile image
Poshcards

my GP surgery contacted me 2 days ago and booked mine and hubby's 3rd jab for next week xx

CSLO profile image
CSLO

That's good news, where are you Poshcards?

Pinford1 profile image
Pinford1

Nothing here happening in Suffolk. ( I’m on mycophenylate)3rd primary dose have been bundled together with booster jabs as “3rd phase “ and some GP practices are still working out whether they can staff and run these further vaccination clinics.

Even so, no one seems to know who is meant to be doing the identifying part - whether it’s hospitals or GPs - at least if you had the letter you perhaps can get to a vaccination centre

Bit of a mess - and increasingly feel more vulnerable ( especially as I have new diagnosis of bronchiectasis and possible aspergillus 🙄)

and Covid is rife at my daughters school.

CSLO profile image
CSLO

That sounds familiar Pinford. Previously a sort of cooperative of surgeries was formed here to vaccinate the local populace rather than individual practices vaccinating their patients. It doesn't look as if that is going to be happening this time round.

I can't find evidence of local contactable hubs either. You can book through 119 for booster shots but not for the third dose. There has to be a six month gap between second shot and booster shot which will take me to the end of Nov. I was missed off of the relevant grouping first time round thus the delay!

I wondered whether that BBC article might inform and spur on the GP surgeries but see no evidence of that here. It is all so very frustrating, wouldn't it be wonderful if we could relax with the knowledge that someone has our back?!

cowhide profile image
cowhide

Just to add to this (I have sneaked over from the scleroderma and Raynaud group) I eventually got a letter from my GP after repeatedly contacting them and them trying to fob me off with either ‘phone 119’ or ‘you will be contacted’. ( although my mycophenolate is prescribed by my consultant I have insisted it is listed on my GP summary care record after realising that if my GP needs to refer me elsewhere it would not otherwise appear). Then I just looked up the nearest drop in vaccination clinic, turned up without an appointment and had no problems getting jabbed-they knew how to deal with a third primary even though the system is not set up for it. So if anyone has managed to get a letter but not an appointment, try a drop in vaccination centre. (They actually create an appointment for you when you turn up).

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