Gp says I don't have blood cancer and can't have 4th covid jab

[Dottiedot]

Hi all the title of my post pretty much says it all. I rang my gp to find out about my 4th covid jab he says I'm not entitled to it as I don't have blood cancer. This is despite me being diagnosed with PV 15 months ago and being medicated with 90mg of pegasys interferon on a weekly basis. Is anybody else experiencing the same issue with their gps

[Hidden]

The MPNvoice website says we are entitled to a 4th jab - why don't you ring your haematology team (or whoever is looking after you apart from your GP) and ask for a letter?

[Dottiedot in reply to Hidden]

Hello Mrs Red Boots thank you il try the heamatologist secretary I did raise with the gp that he is out of date with his information let's see what he comes back with as well

[Mazcd Partner MPNVoice]

Hi Dottiedot, you could refer your GP to the information on our websitempnvoice.org.uk/news/4th-do...

[Dottiedot in reply to Mazcd]

Thank you Maz I did tell him that too I will send them the link as well

[Dazakella2010]

I can 100% tell you that you are entitled to a 4th vaccination…. I’m under professor Harrison and she has just advised me to have mine done. All MPN are called as blood cancers.

[Dottiedot in reply to Dazakella2010]

Thank you im going to try and get referred to Prof Harrison and her team as well the last 15 months the care received has not been great but I think lot of it has been down to lack of understanding the condition would you know if its your gp or heamatologist that does the referral

[Dazakella2010 in reply to Dottiedot]

She is fantastic!! It was my haematologist from my local hospital that referred me but your gp can also refer you at your request.

[Dottiedot in reply to Dazakella2010]

Thank you its worth a go il get in touch with them tomorrow to see if they will do a referral

[Dazakella2010 in reply to Dottiedot]

Everything is worth a go 🥰

[ciye in reply to Dazakella2010]

My gp couldn't refer me as guys is out of area,...

[Dottiedot in reply to ciye]

Oh no are there no other mpn specialists you can be referred to

[Otterfield in reply to ciye]

Guy's is out of my area too but my hematologist referred me and I have regular phone consultations.

[tatty123 in reply to Dottiedot]

My GP referred me to Guy’s and the care I’ve received there is amazing. I have ET.

[Raphael_UK]

Its a shame that its all uphill to get the 4th jab, Ive given up. I showed my GP the MPN info, I asked my haemo to write to my GP as my GP says 4th jab is for people with blood cancers not MPNs - The Haemo wrote saying I'm entitled to a 4th jab, then says although from his bloods readings its a waste of time. This illness can be hard work sometime, especially when you don't have the energy to fight for your rights.

[Dottiedot in reply to Raphael_UK]

Hi Raphael it's shocking just how insensitive some of our drs are especially when you feel poorly it is most definitley an uphill struggle

[gilded in reply to Raphael_UK]

As regards 4th vaccination, I didn’t bother to ask my GP. Went straight to local Chemist who jabbed me.

[EPguy]

If they require proof that we have Blood Cancer, here is an authoritative UK source that should meet that requirement. I can't see them disagreeing with the WHO. Some Drs may still be living in the early 2000's before this definition was changed to Cancer from a "blood disorder". I'm guessing younger Drs should not have this confusion.

bloodcancer.org.uk/understa...

<<MPN is classed by the World Health Organisation (WHO) as types of blood cancer. >>

[Dottiedot in reply to EPguy]

Thank you I did mention to them the gp was complete out of date with his comment which was 'there is no evidence of blood cancer on your history pv is not a cancer'

[monnywese in reply to EPguy]

3 years ago I asked my hemotologist (sp?) if I had blood cancer. He laughed in my face, said absolutely not, and that I was not entitled to any programs for people with cancer. I discontinued all treatment at that point. There are good programs here for people with cancer, but according to him, I am not one of them.

[Dottiedot in reply to monnywese]

Your haematologist sounds like a complete moron. Have you been referred to anyone else so you can get some treatment

[hunter5582 in reply to monnywese]

I second the opinion by Dottiedot. Even the hematologists who still prefer to look at it as a disorder rather than a neoplasm know that it is classified as a blood cancer. Definitely time for a new hematologist, one who actually knows something about MPNs. Here are two lists. mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

[EPguy in reply to monnywese]

Did you stop treatment on Dr's orders? Cancer or not, the increased safe survival we've had in recent times is from watching, and treating when required, our blood counts.

Your earlier post notes you have PV. So you would need to control your HCT for example to reduce bad outcomes. In the "old" days they didn't know this and MPN survival was lower. Seems your Dr is not aware of these things and remains living in the Old Days.

[Penny-10]

I had no luck with my GP either. Had to email my haematologist nurse, she sent me a letter to say I have a blood cancer and to use this as proof that I am entitled to the 4th jab. Went to a walk in clinic this Saturday and finally got it done. Would still be waiting if I did not request it. Good luck and hope you get it sorted soon. X

[Dottiedot in reply to Penny-10]

Thank you Penny well done sounds like you have a good heamatologist nurse x

[moo196]

Please attend any mass vaccination site with proof of Yr condition and treatment. No letter from your GP is required.

[Dottiedot in reply to moo196]

Thank you moo il find out where it is x

[Nay123]

Hi,

I’m just thinking, if your GP is reluctant to recognise MPNs as blood cancer even after providing information from the MPN voice website and WHO, I’d consider making an official complaint but at least change GP surgery. It’s so important to have your medical team on your side and that includes your GP.

Hope you’ll get your recognition and the 4th jab. I’m yet to call my doctor to ask for my 4th dose and hoping for a smooth process 🤞

Nads

[Dottiedot in reply to Nay123]

Good luck Hooe you get your 4th dose

[Wyebird]

Horrified ! Is this the GP talking or the receptionist ?Either way just ignore them. Read Maz’s post then go to a drop in vaccination centre.

Good luck keep us posted.

[Dottiedot in reply to Wyebird]

Morning it was the GPS words relayed through the receptionist I explained to her the gp is out of date with his information and told her about mpn voice and blood cancer uk she's gone back to him il let you all know what he comes back with next x

[Dottiedot in reply to Wyebird]

She did say to me to get all the information together and if he still comes back with a no she will make sure he sees it she was very helpful x

[Wyebird]

I don’t think GPs are giving injections now my advice would be to just take something that shows your illness to a walk in vaccination centre and get it done. Then just forwarded something from MPN voice to the doctor’s surgery. That’s what I did. For future reference I believe you do need to make the doctor aware that you are a high risk patient.

[Dottiedot in reply to Wyebird]

I don't think they do them at my GPS either I just wanted a letter from him to say I should have it x

[Wyebird]

You do not need a letter from him. I showed a copy of a letter I had from years ago and a blood test result. It had haematology depart on it somewhere. That was sufficient.

[Dottiedot in reply to Wyebird]

Oh perfect I will give that a go but my gp also needs to acknowledge what I have so I will still press for him to update his knowledge or you have no chance of the best care and God forbid if I caught covid with his attitude I may not get the anti viral medication

[Wyebird]

Yes totally agree. I did just that after I had photos of some skin changes to a skin specialist. The reply from the specialist actually stated that there was no correlation between hu and skin cancer. My Gp is fab so I politely sent them and the specialist a letter and a copy of the hu leaflet and information on MPNS. highlighting the relevant text.

Now go get that jab!🤗

[Plavers]

I’m afraid that the quality of GPs varies wildly. There are limits as to what is acceptable and I think yours has proved to be a Dud. Most GP practices now have a patient’s body and I think you should be complaining to them. Meanwhile print out a letter (either one from this site or one from your Haematologist) and get that 4th jab. I’m 71 with ET and got mine last week whilst working away in Blackpool.

[Lifam]

I am absolutely sure you're entitled for the 4th vaccine. I received letter from haematology department in the hospital that being blood cancer patient (I have ET), I should have the 4th booster vaccine.I showed the letter to my GP who agreed I'm entitled to it, she wrote me a certificate for 4th injection. Make sure your GP get it right. X

[Manouche]

5 vaccine doses

People aged 12 and above who have blood cancer – MPN – should have five vaccine doses

[ET500]

Hi , I live in Scotland, when phoning the NHSScotland line , I told them my situation and had a letter been generated for my 4th jab. Lovely man said it hadn’t but why don’t I go to a walk-in centre and explain . This is what I did , with letters ready from this site . Didn’t need them , lovely people on desk looked back on computer on last jab dates , and as long as it is has been least 3months since last jab I was ok. So had jab there and then.. They did ask for address , NHS number , date of birth and the date of your last jab. Never phoned doctor as all they say is their aren’t dealing with vaccinations. On my vaccine certificate (phone app) my jabs are marked doses not boosters. As others have said try the local drop in centres. I went to my nearest one so I was in their area and they could pick up my detail on computers. I have heard from others trying to get LFTests out of their health area being refused tests.. whether this would be the same for vaccines I’m not sure. Good luck go with confidence.

[catkinspolymer]

get a new GP he/she is wrong my 4th jam on tuesday next

[HazeBlue]

Contact your local health authority ccg and they will send you email confirming you can have 4th dose. If you have an mpn then you are entitled to the jab. Good luck

[Hopetohelp]

Terrible ignorance shown by your GP

[Dottiedot in reply to Hopetohelp]

I agree totally x

[Hombre]

The latest NHS guidance seems to be that you must have been diagnosed at the time of the 1st or 2nd vaccination to be eligible for another booster. So anyone diagnosed more recently may not be eligible. I guess your diagnosis of 15 months ago would make you eligible.

[Dottiedot]

GP Surgery just called me evidently the Dr is going to take advice on what I've raised and they have asked me to send over any evidence that PV is a blood cancer

[NewBloom]

Hi, Call your consultant's secretary. I did this and was sent an invite letter. Had my 4th last Sunday. X

[Annula]

Hi Dottiedot - have you asked your haematologist to sort this out ? or the practice Mangager at your GP surgery?

[Dottiedot in reply to Annula]

Hi no I haven't yet that will be my next step too x

[Dottiedot in reply to Annula]

Just contacted the haematology secretary they don't know anything about it either they will look into it 🙄

[Folly41]

My GP's surgery refused to give me a the required letter although I showed them the letter from MPN Voice, would not say why. Could be due to pressure of work.

I contacted 119 who confirmed GPs are required to do this.

My consultant has agreed to give me the required letter.

I had intended to make an appointment online and show a letter I have from 2015 to confirm my wife has MPN.

[Dottiedot in reply to Folly41]

Hi Folly it's so wrong I just don't understand why they make everything so difficult

[Folly41]

I agree and with the number of Covid cases increasing you would think there would be more emphasis on making it easier to get vaccination.

I get the impression that many of the Vaccination Centres are fairly relaxed about vaccination as long as one confirms one has MPN and show the letter from MPN Voice.

[Dottiedot in reply to Folly41]

Thank you really appreciate yours and everyone's response we are all in the same boat

[hunter5582]

Having looked at this entire thread I must say it really is appalling. What do they mean you need to prove that PV is a blood cancer? Seriously! For the love of Peter - look it up on the NHS website. Or WHO. Or just Google it. Or go back to medical school - you need a refresher! 😠

I hope by now you just went ahead an had the 4th dose. I would fire any doc that acted with such ignorance and was so unwilling to learn. I believe others suggested it is time for a new GP. I would certainly agree.

Happy jabbing.