If I am what do I win?
Started social distancing 16/03
Started shielding 23/03
Registered vulnerable online 01/04
GP practice queried why I had 23/04
Haematology confirmed why 30/04
GP called to say okay to stay on list 01/05
First shielding text 21/05
Second shielding info text 22/05.
Still no letter yet but guess that’s in the post.
Looking forward to 30/06!
Doubt it. No prizes for coming somewhere in the middle. 🤣🤣🤣
My surname begins with A so wondered if they had started with Z?
They may well have done. But then I’m an A too. :))
I got the (unwelcome) letter last Friday, since when I have been bombarded with robotic text messages - to which I have replied STOP.
Pretty sure my GP is unaware of this because the copy of the letter addressed to the practice was in the same envelope.
The most recent text advises me to expect a phone call - can't wait!!
Still, it's all advisory anyway.
Breaking news - just got the aforementioned phone call whilst in the middle of composing this post. I do not expect any further pestering.
Andy
I look forward to the call that was mentioned in the second text.
I have access to my records online and I can now see the letter from my gp about shielding. I can’t wait for the post to come.
I too have online access to my records - no letter on there!
I think I made it clear to the pleasant lass who called that I didn't take kindly to being considered an extremely vulnerable crumbly!
A
Your post could have been me !! I responded exactly the same !!!!!!
Well done . Glad I’m not the only one who feels like that
Stay spirited
Keep on keep on waiting 👍🏼
JUST had ANOTHER text . They are now worrying about my ‘ mental health’ AND seems I can ring for ‘helpful ‘ excercise advice to .
They obviously havnt recorded my response to the well meaning girl on phone . ( I was polite but very clear that I have no intention of shielding just continue being sensible
Keep on the struggle 🙏🏼
Hi Andy, can I just ask why you find it so offensive to have received a shielding letter?
I have PV and taking Hydroxy and I was so relieved to receive the letter. I don’t want to find out if my immune system can tackle this evil virus. I lost my mum to it in April and if you had seen the picture of her the night before she passed then you would want the protection that the letter can provide.
Unwelcome, not offensive. I am an independent sort of chap and uninclined to accept being fenced in.
The fact that it took the powers that be 8 weeks to get round to sending it makes me think it's all about backside covering anyway.
I am sorry for the loss of your mother, I know how that feels, my mother having died in August.
Andy
Sorry about your mum Andy. I never knew pain like it. I am still struggling but it's early days and not being able to be there at the end like I always promised to do is eating away at me.
The pain will fade believe me and all you be left with is the memories, which will probably never fade.
I am wondering when the "oh, I must tell mum about that" moments will stop!
Do you know what, I've received absolutely nothing ! !
I had to register myself , to which I've heard nothing, my GP says I'm on their list so don't know why I never had a letter or text. I have other problems besides the ET also. I've now given up on the whole thing it's a load of crap !!!!
Yeah but I am down in London so that’s probably why it was so quick 
it has taken over 7 weeks since registering so you never know!
Though good to see the boys back in training this week!
Indeed, some hairstyles going on there 😂
Like yourself, been in touch with GP, he actually confirmed I was to be on a 12 week 'quarantine' and your a diabetic as well, an "Official letter", nothing arrived, "you don't need one of those!", after nine weeks! A bit backward our GP's in this westward neck of the woods, some call it Northern Ireland?
I'm claustrophobic as well, just worn out my pair of slippers, and pieces of the house badly need repainting by continual hand wear, thinking of restyling my hair in pony tail fashion!
If I don't get out of here by 15th June, I reckon my 'house' will need a government health warning on it!
I have been going out for exercise but early in the morning when quieter. Though also running out of steam now as my letter says until 30th June. At least yours ends on the 15th.
Me too coming out of enforced social shielding July but I feel unsafe so I am continuing until September or indeed until there is a viable vaccine.
An interesting conundrum.
I went a week early March the 13.
People are so selfish.
No thought for others it is so disheartening.
Due my first lock down consultation on Tuesday.
Then it will be a struggle to get my medication as the out patient facility is in the middle of the ground floor of the hospital.
The new normal is a nightmare.
However, if all is well today and the wind has blown itself out I may be able to go for a 3 miler on the prom.
Keep safe everyone see you all on the other side of 2020.
I have friends who keep saying want to meet up in the park now we social distancing has been relaxed, and I have to keep reminding them that I’m shielding. Though I do go out for a walk early before all the covidiots are up and the park gets very busy now. Especially with the warmer weather.
Keep safe as well!
Its probably because your GP surgery does not class your MPN as cancer but a blood disorder, as mine did.
PV (and I assume other MPN'S) was officially changed in 2008 by WHO. I ensured that I forwarded information from Bloodwise by email last year to say I have a rare blood cancer. I then followed this up with two phone calls to ensure this was on my medical notes. It has been lucky I did this in the circumstances we are now in but I still wrote to the Welsh Assembly Government asking when we would get our shielding letter as Wales was slower doing this than England. I now gave a free ongoing shopping slot from Asda which has beenost helpful in these scary times. STAY SAFE all.
I think your right when they called me to ask why had I registered on the vulnerable list I explained what and had to go through the whole it’s been classified as cancer since 2008 routine. I also sent them all the info from mpn voice and blood cancer UK, which they ignored for a week. So I then contacted my clinical nurse specialist for confirmation and then they replied I could stay on the vulnerable list.
Take care butt
Hello Hollyhedge,
I was very interested to read your post re shielding letters. I am also in Wales, and haven't received a letter form anybody . I rang my surgery at the start of all this when we all received the email from bloodwise but couldn't get passed the receptionist. I haven't even discussed my diagnosis with a GP because you get a different doctor each visit and I don't know that they would be able to tell me anything the haematologist hadn't already told me. Also Aneurin Bevan Health Board doesn't subscribe to patients know best which would give me access to my medical records so I don't know what's on my medical notes at the surgery.
Anyway, sorry, that's a bit of a moan, what I would really like to ask is did you contact the Welsh government through your MP or by direct contact?
I hope you don't mind me asking, I understand if you don't want to answer these questions.
Tge answer fromWAG was confusing sobgo through your MP. Better still write an email to bloodwise, ask for their infornation about reckaddofying as a cancer in 2008 and 4ward thisvtobyour GP and your Mp. 2 pronged approachbis akways good. Best of luck, stay safe
Hopebu understood all that gobbledygook! !!lil
I did it direct but the answer was a bit confusing. I would advise to go straight to MP and also send inf. from Bloodwise to your GP and ask them to update your records to reflect you have a rare blood cancer. Best wishes
Mine arrived this week too. I have been working managing a Foodbank all way through so feels a bit ludicrous now. I happened to have a phone appointment with my consultant yesterday and he said that our trust was going through the list of people who should have had one but had been missed by GPS or whoever did the first wave of letters. Guess that is the same for many of us.
I have agreed to not go into shops at all and to be even stricter with hand washing and social distance but apart from that I am continuing with my routine. My kids are not due to go back to school, my husband works from home, my bloods are under control and I live in an area that has been fairly untouched with very few cases ( although everyone is now flocking to us for the beach, so time for us to stay even more away). I don’t have any other risk factors and was actually tested this week as part of the random sampling survey and know I am negative at this point in time. Consultant said it is an advisory letter and as long as I remained sensible and that my family was too, it was ok by him.
All the best to everyone
Hey Belgobrit, are you from the land of frites? I used to go to school in Belgium a very long time ago.
I haven’t been in a shop now for 8 weeks. My partner has been doing all the shopping and have managed to get deliveries from a few of the supermarkets so that has helped. Where we are in London some parts are like pre lockdown no social distancing at all no queuing to get in shops or at tills. So the online shopping definitely helps reduce the risks.
Tot ziens
Hi Jonny
Yes I am from the land of frites and chocolates but the French speaking side.
I live in Weston super Mare and we had been fairly protected but our hospital has just closed its doors to new admissions due to high number of cases
Je m’excuse
I was at the British school in Tervuren and lived in Overijse so on the Flemish side.
Also land of the biere and could do with a nice cold Jupiler this bank holiday in lockdown!
Take care
No problem. Jupiter, Gueuze or Hoegaarden and a nice bit of Chinatown or Maredsous cheese
I’m in exactly same situation. No letter or text. I have PV and Parkinsons. Daughters shopping for us but what will we do when they go back to work? Husband mainly works from home. Elderly mum also living with us.
Hi, i also don't have a shielding letter. I have ET and take hydroxy. Can I ask what your diagnosis is and is this why you have to shield ?
Hi i am ET CALR+ only aspirin at the moment though I was supposed to start hydroxy at the end of March, this was put on hold because of the coronavirus.
I also have some other underlying health conditions so what I was reading I felt it best to shield and that’s why I registered on the vulnerable list as I didn’t expect my GP would include me.
I'm fighting just now to get my letter because after 9 weeks shielding management where I work are Now asking for it 🤔 this has caused me a huge deal of added stress and frightened they are going to tell me get backbto work asap. Extra worry as I am an NHS frontline worker. My consultant is phoning me on Tuesday so hopefully I will be put on the list then.
Some GPs are sending them out so might be worth calling them as well or get your consultant to write to them after your phone call. Good luck!
My GP was my first phone call, her receptionist relayed a message saying " I'm only high risk and NOT in shielding catagory" im contstantly reading conflicting stories to shield or not to shield with ET and on hydroxy 😖
That was pretty much my practice attitude why have you registered?! I tried explaining the reasons but she was suggesting it was better for me not to shield and do stringent social distancing, I pointed out stringent social distancing would not be going into shops standing next to people!
I think until they know more I will be keeping safe as possible and would be a waste of last 8 weeks to throw it all away now. Hopefully your consultant can clarify your situation.
Yeah keep safe and don't was at the hard effort put in over the last 8 weeks to keep yourself safe. Only 3 or 4 weeks left and start to get some normality back in our lives. Stay safe and thanks for the advice and chat.
Congratulations - you just won a food parcel!
I haven't received anything and can't register as I live in Wales. Must admit I haven't chased anything as to shield for 12 weeks would be very difficult as my wife has severe mobility issues and doesn't go out unless I'm with her
Received a letter about my 3 monthly appointment to say not to go and get bloods done in the community, I assume they will ring me with results. I would have thought if I needed to shield they might have mentioned it in the letter. Going shopping once a week and dog walking, and keeping my devistance from evertone. Fortunately we live in a rural area.
It seems that the issue of shielding letters for MPN seems to be different all over the UK. I work in a high school in Scotland it's been closed but staff are now to be asked to return in June. The High school is currently being used as a Hub for primary children of key workers we have been asked up to now only to volunteer if you do not have underlying health conditions. My son will have to go to a key workers school as my husband is also a key worker. When I phoned the GP yesterday I was advised it was similar to the asthmatic girls that they had working in the practice and I should return to work as we are only classed in the vunerable group and obviously the rules around social distancing are now changinh. After webinar yesterday I phoned the hematologist who is contacting me Monday/Tuesday but the receptionist in hematologist seemed sure I would not qualify for shielding as I have ET Carl and on aspirin . Will see what is said Monday /Tuesday.
It is definitely a confusing picture and not helped by different policies across the nations.
Good luck with your call next week!
Thank you hopefully it'll be a bit clearer after speaking to the hematologist , hope you get your letter !
I received a shielding letter then two weeks ago an apology and that I didn’t need to shield. Spoke to consultant - I’m high risk but not in the most at risk category- which is what I thought anyway and fits with MPN advice. Nb still get govt texts as that is automated. I’ve stopped them as they certainly know how to scare people. I shouldn’t be political but it might help if Dominic Cummings was sent them so he could understand the rules. Jx
I think I’m also probably not in the high risk category either but I don’t want to take any risks yet, especially when you have people with the virus driving all over the country spreading it just because they couldn’t get an Ocado delivery in London
Am I being negative or realistic?
I am new to PV and this website
