As I've written before I have never received a shielding letter and in Wales there is no mechanism to register. Someone on a Facebook group posted the link to the Blood Cancer UK website where it specifically mentions MPNs and they should be prioritised. I also had sight of a joint letter from our MP to the local health board pointing out that a number of people hadn't had shielding letters.
I sent an email to my GP referencing the Blood Cancer UK website and the link, plus what our MP had said. Initial email said, letters sent by health board. A couple of hours later had a text from GP saying they had put an electronic code on my notes saying Clinically Extremely Vunerable (PV) which had gone to health board and is on their system. So when they have this groups vaccine I'll get a call. Looking at groups, it looks as if I'll be in group 4 instead of group 6 or 7. As I pointed out to them I wasn't wanting to jump the que, but equally didn't want to slip through the net, especially as I'm my wifes unpaid carer. In one way I'm pleased that I now have the correct coding and will get vaccine sooner, but it's a bit of a reality check when you see the words Clinically Extremely Vulnerable in writing. Keep safe.
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mark382
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Hopefully you are sorted but i do think its a lottery down to the GP or Consultant and their personal view on MPN's.
For me (PV) it was easy to convince my GP as the medication im on (Ruxoltinib) was specifically mentioned in the criteria as make us clinically vulnerable, so any other opinion was irrelevant.
My sister (PV/ET) has recently started Hydrea but despite conversations she has been told by both the GP and her Consultant she is not extremely vulnerable so is more likely to be in group 6.
Its always been the same, things like critical illness claims, signing prescription exemption forms, has always been a battle as ill informed GP/Consultants still refuse to recognise the conditions as a blood cancer. My GP refused to sign my free prescription form because in his words 'hes old school'.
That said he also refused to allow me any treatment for psorasis because he says its vanity.
Hi Paul I'd be seeking another GP. !Reminds me of a saying from a past job where we had managers unwilling to change their chauvinist, bullying r outdared style of dealing with folk, , ,
If you can't change the people , , change the people.
You are entitled to free script you ought get them and I had psoriasis in my youth and anybody that thinks it's vanity would do well to have a dose for a while.
You're absolutely right, the letters are a lottery. I looked very closely at who was and who wasn't receiving letters and there was no consistency. I sent GP the link and incase he didn't read it I cut and pasted the section which included MPNs. May have helped that I referenced the local MPs letter.
I did the same in April as I hadn't received a letter. My CNS sent me a copy of a pdf from the MPN website which I sent to my GP. She responded immediately adding me to the NHS CEV list. From then on it has worked smoothly.
Hi Mark, GP doesn't have me down as Clinically Extremely Vulnerable & I was told that my Consultant needs to email the surgery to confirm that I'm in this group. My Consultant has done so. I'm waiting for the GP to acknowledge this...
My GP doesn’t have me down as clinically vulnerable either. The nurse taking my blood was shocked. I’ve decided right or wrong that I can shield as I’m retired others can’t, so I’ll wait.
Glad you were proactive and have managed to get the extremely clinically vulnerable letter - and yes the wording comes as a bit of a shock! While before it was useful for those needing to justify working from home, now it is incredibly important for us all at a higher risk to access the vaccine at an early stage. I have the letter but no vaccination date yet. X
Hi I have essential thrombocythemia jak2 positive My husband is high risk and vulnerable we were speaking to our gp he told my husband he would be having vac in next 2 weeks he looked me up said I wasn’t high risk would be having mine in April I have not had any shielding letters although husband has !!!!
As original post I'd never had a shielding letter, but sent Blood Cancer UK web link and cut and past whole paragraph from web page. Initial response was we don't send the letters. About an hour latter text from GP saying put on list.
Thanks for this post. I’ve emailed my GP to ask to be put back on the shielding list so I can be in group 4. Outrageous that we are having to fight for this. I doubt it will happen so I’m gearing up for more action. Jx
Thank you mark382, and everyone else who commented, for highlighting this about the ‘shielding letters/list.
I have MPN ET Jak2+ and also did not receive a shielding letter. I contacted my haematology nurse early on and when she checked my blood results she advised my immune system was not compromised but ‘to take all the advised precautions’ against catching covid. Whilst I didn’t ‘shield’ I have been extremely careful.
With the roll out of the vaccine, and reading this post and the link to blood cancer.org.uk I have contacted my local GP surgery this morning to ask if I am actually on the ‘extremely vulnerable’ list and if not to be added to it. Because of my age if not in the ‘extremely vulnerable roll out’ I could be waiting quite a few more months to get vaccinated!
I have never had a shielding letter, but only went out shopping once a week. I'm lucky as I live in the country and manage to take the dog out several times a day. Anyone I see is usually a long way off. I sent Blood Cancer UK link and copied relevant section to GP. I don't know if they contacted haematologist or made decision off there own bat but the evidence is there in Blood Cancer UK website. GP just texted me a couple of hours later confirming that I'd been put on list. Good luck.
Same here really. Live in a village. Had home deliveries or shopped when necessary at quieter times, or my other half went, and spent a lot of time in the garden in better weather.
I’ve had a reply via ask my GP but obviously the reception staff are monitoring messages and their reply said ‘those in the extremely vulnerable group will have received shielding letters’ ....and ‘we are currently vaccinating the over 75’s’....
I’ve submitted another message asking for a GP to check the list and add me if I’m not on it.......Also just seen on a news feed that from today people in the ‘over 70’s and extremely vulnerable’ categories will be receiving their letters inviting them to go for the covid vaccination.....
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