Vaccine- saga continues

[Jlah]

Hi all not posted for a while as had a cold which knocked me for six but also my fight for the vaccine continues. I finally received the govt email saying moved to group 4 and should have already been vaccinated but if not they gave a link. So I used the link -not eligible. So I rang 119. They couldn’t update so rang the gp. Receptionist lovely and sent email to their vaccine centre and said it would be in a couple of days. Yes at last. No - I get a call back. Why moved to gp 4 - mpn I said. Oh in that case your hospital has to vaccinate you. They won’t I said. Sorry we can’t do it. So I rang the hospital- receptionist was v unhelpful but it made me stand my ground. But no hospital will not do it unless on intravenous chemo (dr said to me his supplies were precious). So told me I had to go back to my gp. By this time I was quite ill by the stress of being past back and forth. Where is the patients health in this bureaucratic ping pong. Four days later I summoned the energy to ring the gp again. Lovely receptionist - my coding was wrong. It took her 10 seconds and the willingness to help and I’m now booked in for next Saturday. So yay but it’s absolutely unacceptable I was treated like this. Anywhere else in the country and I would have probably been vaccinated weeks ago. Anyway I’m moving to Devon in six weeks and looking forward to being treated by a local surgery that still seems to know it’s patients rather than being a number. Jx

[mhos61]

Morning Jlah.

So pleased to hear you’re finally booked in for your jab, however, it’s totally unacceptable the way you have been treated. I can relate to the stress created by this situation too, it’s been a fight for me, but I got there in the end.

Hope your move to Devon will help in alleviating this atrocious experience.

Good luck, xx

[amhann]

Hello Jlah - that’s great that you are booked in but it makes me SO angry that you and others are having such a fight! I hope your move goes ok (p.s. get straight on your new GP’s list for your 2nd dose)!!! Very best. Anne-Marie x

[Tico]

What a joke. A lot of people on here had to fight one way or another to get vaccinated. I phoned my Gp's surgery to be told they'd only just finished the 80's and over and were doing the 65 upwards next. I told them they were not following NHS guidelines as they were going by age and asked where the CEV where in the pecking order, the receptionist didn't know what to say and said they were following guidelines! In the end my Daughter booked me in via the NHS booking site. The day after my vaccine, I had a letter asking me to book my vaccine! I spoke with my Haematologist Wednesday and one of the first things he asked me if i'd had my jab and when I said I had, probably because of my respiritory problems, he replied not just because of that, he said I was too high risk of further clotting events and having an Mpn while cases of Covid are still high in my area, it was better to be vaccinated sooner rather than later. I've got a phone call with Gp this week and will be having words about him following 'age guidelines' and not the correct Government guidelines, he would have had the letter of the Haematologist by then as I had my yesterday. Good luck Saturday, just a pity you had all that stress just to get it. Tina.x🤗

[Minu68]

I'm still trying to get a vaccine sorted.... Similar experience to yours 😬☹️Like you, it is very stressful, and I kind of gave up pushing because of it. I will try again this morning. Had to send the bloodwise letter to the haematology department before they agreed to advise gp I should be in group 4. This is the leading haematology hospital department for West Yorkshire....!!!

I feel like the gp and my haematologist took great risk with regards to my life and covid, as a pose to being cautious until more was known. I did try and fight last March, was made to feel like I was trying to work the system so I could have shopping delivered. A gp actually told me that they didn't want to 'overload the system with people with your condition' and haematology also said they didn't 'think' that ET put me at a higher risk.

I've lost trust in my gp and haematology. It doesn't feel like they have supported me, or listened /cared about my well being in this pandemic.

Well done getting the vaccine sorted, Xfingers I manage to as well 🙂

[Jlah in reply to Minu68]

Sorry you were in this position. I had to go between the hospital and gp over 8 times before it was sorted. I just rang my gp on Friday pm (knew it would be quiet) and said I had had a text from govt saying I was in group 4 now and should have already been vaccinated but the link didn’t work. I’d done this before but it finally worked. Nb you can also contact your clinical commissioning group. I did this on Tuesday so whether they had changed something that allowed my gp to book me in I don’t know, but worth a try. Easy to write but stay calm and look after yourself. It will happen. Jx

[Minu68 in reply to Jlah]

thanks, didn't know about the clinical commissioning group, that's good to know!

[Foss33 in reply to Minu68]

I totally agree here re losing trust and faith in both GP and Haematology. I too am still fighting every day and feel like I am swimming in treacle, getting so frustrated and frankly exhausted by it. I am being made to feel like I am overreacting and that I am in category 6 anyway which will be soon so what is all the fuss about. I totally agree with the point about being made to feel that I am trying to work the system too. I am desperate for this shielding letter, I work in a primary school and will have to go back to work without one. I honestly feel like I am a child who is begging mum to write a letter to get out of PE this week. There is nothing more that I would love than to get back to work but cannot ignore Professor Harrison and Bloodwise letter. GP receptionist response to shielding was they don't decide who gets a letter, just show your employer Bloodwise letter if you don't think you should go back to work.Back to the trust issue, I genuinely don't know what to do about this, I was due to start interferon literally days before lockdown 1 which has been put on hold. During my last appointment they have told me this is the plan still as soon as it is safe enough to do so. I am questioning this now, I would love nothing more than to get a second opinion from Prof Harrison but the logistics of going to London for an appointment would be a real challenge, I live in Hull.

Anyway, enough of my story and rant, I do hope we are all sorted soon as frankly this is only adding to the daily burden that we live with having an MPN. Take care and stay safe, I look forward to hopefully being able to meet again at a forum when it is safe to do so.

Andrea x

[Minu68 in reply to Foss33]

so sorry you're going through this too, it's hard knowing the risk yet getting treated as if you are trying to 'work' the system. I would much prefer to be in group 6....but we now know we need to be in group 4 to protect ourselves as best as possible. Don't apologise for letting it out, the extra stress of having an mpn, the treatment being held back, our situation, I am feeling the same frustration. I do look forward to the time when we may all be able to meet up, being in Leeds, we're virtually neighbours : D

[JaK2ET]

During the first lockdown in 2020 there was a wide variation in the experiences of MPNers, judging by the posts on this forum. Some people were placed without fuss or difficulty onto the "clinically extremely vulnerable" lists and were able to access help such as priority supermarket delivery slots if required ... but others struggled and were told that their condition did not qualify them for this special status, or they were pushed from pillar to post as each part of the system wanted to pass the responsibility to another part.

You would think that by now these issues would have been sorted out, with clear guidance issued to all hospitals, health centres, and GPs, and then put into practice ... but it seems not!

I hope that your coronavirus vaccination goes well.