Frustrated: Hi all. I am really pleased that so... - MPN Voice

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Frustrated

Jlah profile image

Hi all. I am really pleased that so many of you are being vaccinated but please spare a thought for those of us who are in health authorities that are ignoring the govt advice. Is my life less worthwhile because I live in Hereford rather than being treated elsewhere? It feels like it. I live alone. I’ve contacted the surgery three times, sent the link and no response other than it’s up to central govt. it’s making me quite ill and I’m trying to be rational about it each day but it’s a struggle. Jx

26 Replies

Hi Jlah. I in the same situation and I live alone. I haven't bothered phoning my Gp as we were told not to, that we would be contacted in due course. Did you receive a shielding letter or have other medical conditions? Thanks. Tina.x🤗

Jlah profile image
Jlah in reply to Tico

Hi. I was shielding then taken off the list in May but told to still shield! I have had a major stroke and I think part of the problem is my surgery lists my condition as neurological which is gp 6 and have missed the blood condition (ET). I take hydroxy plus blood thinners. The problem for me is that any stress causes illness and stroke fatigue so I’m getting myself into a bit of a mess about it atm. My consultant thought I was on the shielding list but perhaps there is a separate CEV list. Plan to focus on just the here and now and accept I may not be able to leave the house until the end of summer if I don’t get first dose for a few weeks/month. My family and friends are 150 miles away in Devon so I’m v anxious most of the time as do not see anyone for weeks/months and vaccine would eventually allow me to bubble up with family. 🤞 you are contacted soon. Jx

Tico profile image
Tico in reply to Jlah

I'm so very sorry and feel for you. Even though I live alone and don't see friends anymore I do see my Daughter and her family in our bubble even though i've not had the vaccine yet. My Daughter is extra careful because my Grandson as Austism and my 2 yr old Granddaughter had a major operation last year. I do not think I could go through all of this without seeing them or them not seeing me with the way things are. We don't live far from each other so that makes it easier for me. I do hope you get the call soon just to put your mind at rest. Did you send your Gp the bloodwise link, like a few forum members did? I don't have it but i'm sure someone will on here. In the meantime try not to worry too much and take care. Tina.xx🤗

Wyebird profile image
Wyebird in reply to Jlah

Do you have letters from your consultant stating your condition? If so have you used them in your correspondence? If yes how about contacting your MP. I’m not considered extremely vulnerable by my GP. However I’m lucky to be under Guy’s and on the MPN forum held on the 2nd February 2021. Prof said their MPN patients will he receiving an invitation to get the jab. So I’ll wait. Good luck.

bloodcancer.org.uk/support-...

This is the link for getting help to be on the CEV list that Blood Cancer UK have set up so do go through it, as all MPNs are under category 4 hope it helps

BUT i fully empathise with your situation - like Tina I am still waiting too for my vaccine appointment, I am on the CEV list from day 1 and get all the endless govt letters including the recent one confirming you are priority for vaccine - but the wait continues 😀😀 and yes it does feel stressful waiting, I keep thinking will I be the one that's forgotten 😀😀 and for me I think it is just one of those buttons that press the reality that I have been shielding on my own, like you both live alone, since last March and unable to go to work - so it is more it is something that brings to the surface that actual reality of the stress endured all these months. Keep going we will get our vaccine in due course although I sincerely hope it's in next few days!! Take care

Tico profile image
Tico in reply to Helpatlast

Hi Helpatlast. Well I was only just reading a moment ago that the vaccine minister expects all the vunerable and over 70's to have had it in the next 11 days and the Government is on track to deliver that, heres hoping!🤞 Tina.🤗

Helpatlast profile image
Helpatlast in reply to Tico

We will be i am sure - tehe May be you and me will be the last two vaccinated in England and be on tv news for such 😀😀 take care

Tico profile image
Tico in reply to Helpatlast

🤣🤣🤣

Wyebird profile image
Wyebird in reply to Helpatlast

I e just gone at that link and it says I’m not eligible and I have to wait for my GP to contact me. Is that correct?

It is so frustrating when you are not listened to by the very people (Health Care Professionals) who should be advocating for you, especially when you provide them with strong evidence to support your request.

I have finally been recognised as CEV, but believe you me it has been a battle I could have done without, and I’ve yet to hear I have been added to the Shielding list.

Blood Cancer UK have kept in touch with me throughout this process to monitor my progression, and I have really valued their support. I’m sure they would be interested to hear from you. They can learn from us.

You are owed a ‘duty of care’ from your health care professionals, mine have fallen well below standard at a basic level ie: a lack of response to a significant and time critical request.

I have had to advocate strongly, including registering a complaint to the GP Lead Partner.

I suggest you stick with it and complain at the highest level to get your complaint acknowledged, particularly as you have a history of a stroke makes this even more relevant. Make sure you ask about the ‘complaints policy’ of where you’re complaining to and that they adhere to the timeline of any complaint you register.

Wishing you every success. MaryXx

Tico profile image
Tico in reply to mhos61

So they've finally declared you CEV? What about your Haematologist mary, do they now reconise it? It's terrible that you've had to advocate for yourself and have the added stress what comes with it. Is your Gp adding you to the Gov. Uk. list? Hope you and family keeping well. Tina.🤗

mhos61 profile image
mhos61 in reply to Tico

Hi Tina.

It’s the haematologist who has instructed my GP to add me to the Shielding list.

Apparently, my old haematologist has left. I emailed the new haematologist secretary and added the link to BCUK. I’ve downloaded the letter from the haematologist, checked with GP reception they’ve received it, they have. I’ve been told it’s been ‘red flagged’ for GPs attention, so let’s see what happens.

It’s not quite over yet!

Tico profile image
Tico in reply to mhos61

Keeping em crossed for you mary.🤞Tina.xx🤗

I am assuming that you don't fit into the over 70 group.

I am 70 and after a gentle nudge via email to my GP have an appointment booked (sorry if that makes you gnash your teeth in frustration).

Today I got a further invitation through the post from the NHS in a letter dated 28th Jan, so it's taken 6 days by snail mail to arrive.

In the letter, it says that you can phone 119 to book an appointment - you need your name, date of birth and NHS number.

You might consider trying that. At least you might get a human being who will listen to your reasons for being in the current group.

Andy

Jlah profile image
Jlah in reply to friendofpiglet

Thanks Andy. I don’t want to jump the queue etc and put people in a difficult position. I have currently decided to give up as consultant secretary says it can only be done through gp and they now have a message saying they will not change any groupings so do not contact them. I know this all contravenes blood cancer uk advice but I’ve sent this to them and still ignored. Maybe I’ll get some fight back tomorrow. Jx

friendofpiglet profile image
friendofpiglet in reply to Jlah

You wouldn't be jumping the queue, merely seeking to take your rightful place in the queue.

And bear in mind that it is you that's in the difficult position.

Andy

Me too! Managed to get on the shielding list several weeks ago having slipped through the net last year, got letter, but no vaccine invitation. My husband has one for Saturday, he's 72 and I am 68, and we enquired could I have mine the same time, told absolutely not even though vulnerable, must wait for the next cohort 5 which I know is incorrect as confirmed by Professor Claire Harrison on the forum Tuesday evening. Rang GP and receptionist told me she doesn't have the list and I just have to wait. As you say all we want is the assurance that our names haven't gone through the net again.I don't want to be a nuisance but it is very frustrating.

My Husband consultant wrote to GPs to remind them about my husband condition. He had phone last week for him to go and have his vaccination but unfortunately he was going for his much needed blood transfusion. Was told he would be top of the list for the next batch. Speaking to daughter last night, her M-I-L same surgery had phone call to have her Tuesday. Couldn't make it, so I'm left fuming. Why didn't they ring my husband???. He's now feeling like he's been forgotten. So I shall be making a call when surgery opens. We hear all these people getting their vaccination and they are not in the tiers that the gov have set up. What is wrong with these surgeries. There are people out there who need this to help them see light at the end of this very long tunnel. Since March last year my Husband and many more have had no outside contact other than hospital appointments. And their carers. My husband lucky he as me, but there are lots who don't. Sitting watching TV last night and I looked over at my husband and saw how depressed he was becoming. When will this all end. X

I feel the same, hubby seems to have been ignored although consultant said he'd been put forward but GP ignoring & consultant said he doesn't need to shield. Covid has caused a lot of friction in our relationship & I don't want to have to worry about him any longer. The last thing he needed telling was he didn't need to shield, he's bad at social distancing & sanitising so him shielding was a way to protect my whole family.

Category 4 we are in, yes, but this does not mean we will get the jab any quicker. In my area, our surgery is calling in younger people when they have spare doses left because, as one person who was called in was told , they can get there quicker than older people. I was sent a message by a relative to go online and book my jab at a certain local chemist as they do not ask for the appointment letter, and everyone over 70 was going. I did and booked for myself and husband. We go today. My sisters next door neighbours daughter was given the jab at her surgery at aged 48 because she was there and they had spare doses. It is so annoying to hear this, as uaual it is not what you know but who you know. Try booking online ignoring the message saying, dont book without a letter. It is working here. Why should we have to wait.

Jlah profile image
Jlah in reply to Hydrox

Agree. I could be at the vaccination centre within 20 minutes of a call. Given we’re all at home it should be obvious to contact those in the next groups to be on standby. Glad you’ve had it. Jx

It took me a couple of months to get my registration recognised during the first wave but I proactively contacted Guys then my GP and quoted Guys and they said that they would put me on the high risk register. I was offered my vaccine a couple of weeks ago then it was cancelled due to logistical issues but finally had it on Wednesday. I haven’t been very well at all since but on the mend now and glad I have had it. I really hope you all get your first doses soon as I have lost too many people to this terrible virus

I agree with what many people here say - that the priority is age-related. There seems to be very little consideration of underlying health issues like ET. My partner and I are both over 76 and we had our injections together twelve days ago but they are not finished with the over-70s yet. I am sure it won't be long now, but you will still need to shield after you have had your jab. Be assured there is a light at the end of the tunnel but we have all had to be patient. The important thing is to vaccinate as many people as they can, including those who are in the right place at the right time, because that is protecting us all. It shouldn't have to be to do with younger people being able to get there quicker. We get appointments and old people can get there just as quickly. We had to drive 15 miles and from the car park to the wait after the jab, it was like a well-oiled conveyor belt.

I feel we have to be thankful that in this day and age we can be in touch with people through technology and phones. Keep your hopes up, Jlah.

Hi Jlah, I can relate to your frustration and concerns as has been echoed by the others. I'm 68, have PV and am on hydroxycarbamide with low dose aspirin. Technically I'm in group 5 but have been regularly trying to ascertain whether I should have been shielding, just what increased risk, if any, am I at, should I be in group 4 etc. I've not yet managed to change anything but have been making a nuisance of myself from time to time.

Could I offer the following suggestions, some/all of which you may have already done so apologies if this is the case as I don't wish to be patronising:

1. Raise this with your hospital team rather than your GP practice. Some of the others appear to have done this and the consultant has written to their GP.

2. Use the information on the Blood Cancer UK website (and the MPN voice website and there is a link to this from the BC UK link that follows) when communicating with the specialists. The link is: bloodcancer.org.uk/support-...

3. Communicate in writing (email) and be as specific as possible with direct, unambiguous questions.

Having said this, I've been in contact with my hospital team (by email and then verbally) and been told I should not be in the Clinically Extremely Vulnerable (CEV) group as I'm not at increased risk (my blood counts are now normal). I don't know if this is dependent on there being an MPN specialist within the Haematology team. It does contradict the broad statements that everyone with an MPN should be in the CEV group which leads to confusion but may reflect reality in my case. You may be different because of the stroke concerns or other co-morbidities.

I find it disappointing that we have to push for this rather than be offered information from the specialists. I am though all for us being assertive and doing all we can (frustrating as it might be) to 'manage' the specialists in helping them help us.

You might also find it helpful to be signed up to other networks in addition to this one. There's MPN Voice of course but also pvreporter.com (in the USA, primarily PV but does have other general MPN-related information) and the US equivalent of MPN Voice, MPN Advocacy (mpnadvocacy.com). They've got 3 free webinars coming up in the next few weeks each concentrating on MF, PV and ET respectively which may provide additional opportunities to ask general questions and ascertain risk etc from MPN specialists, albeit in the States. Here's the link to register: mpnadvocacy.com/events-list/

Finally, as someone who's been involved in the mental health field, I really appreciate how difficult it can be for anyone on their own having to deal with these types of anxiety provoking issues without anyone present to talk them through with or to offload on to. These issues can annoyingly often seem much worse in the wee small hours. Taking constructive action even if ultimately unsuccessful can be helpful if it can bring further clarity or peace of mind. Don't forget that there's information on the MPN Voice and Blood Cancer UK websites about ways of trying to cope with the emotional consequences of all of this stuff, if you're not already aware of them.

Sorry for the long posting but good luck and KBO!

Paul

Jlah profile image
Jlah in reply to finlay2106

Thanks Paul. I have tried most of these avenues. I’m now going direct to the Herefordshire CCG as a last try then I will accept with grace the outcome. Jx

After ringing our GP surgery up yesterday and explaining again about my husband and he not be able to have his vaccination last week due to have his important much needed blood transfusion, and daughters M-I-L phone call. Explained how depressed my husband now becoming. This was emailed across to Practice manager who is dealing with the practice vaccinations. Was told we would hear something soon. Had the government letter about getting the vaccination a hour after the phone call. Husband had call from local vaccination centre offering his vaccination next Tuesday. So a big yes from him. And husband is now feeling a little better knowing he's not been forgotten.

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