Letter from NHS: Hi, having written earlier today... - MPN Voice

MPN Voice

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Letter from NHS

Jennytheb profile image
16 Replies

Hi, having written earlier today that I hadn't received "the letter" it arrived in today's lunchtime post. Dated 9 April, indoors for 12 weeks.

Well that at least answers the question, Jac2 ET on Hydrea is a vulnerable diagnosis which as the letter says we are at risk of severe illness if we catch the virus we are more likely to be admitted to hospital than others.

Take care all.

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Jennytheb profile image
Jennytheb
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16 Replies
linphy profile image
linphy

Glad you've received your letter

Hi

I received mine today too, I'm ET Jak2 only on aspirin and have been advised the same.

Lyndsay

IainF profile image
IainF

Still not got mine, take 9 Roxy a day. I'm living in hope that my missus doesn't get ill as that's us screwed as won't be able to get a food delivery slot.

mark382 profile image
mark382

I must admit I am totally confused by all of this. Some people seem to be getting letters whilst others don't. Is it the medication they are on or at the whim of the haematoligist/GP. Is it the code on the file and has a patient been coded properly. Is it down to what country you live in England, Wales, Scotland or Northern Ireland. If you live in England there is a website where you can register- there is no such a process in Wales. I don't know about Scotland or Northern Ireland. After the cock up in Wales of 13,000 letters going to wrong addresses any corrections should have been with recipients by last Friday. None received here. I have PV and on aspirin and venesections. Also on medication for asthma. Sorry about above ramblings and dont really expect any answers to above thoughts. Just made me feel better putting down some of my thoughts. Anyway the sun is shining and keep plodding on. Please all keep safe.

Kari1961 profile image
Kari1961 in reply to mark382

I haven't received a letter either Mark. But I have received emails from Sainsburys and Asda about priority delivery as I'm on their 'vulnerable list' - I received them weeks ago and didn't apply to be on their lists. So I've no idea how they got my details.

I have PV, on Hydroxycarbamide, BP medication and Verapimil for Tachycardia.

I'm shielding regardless of not receiving a letter - and as I'm self-employed and work from home, I don't need the letter for my Boss, as I am the boss. :) and what I say goes!

Joking aside, I think it's all a bit of a shambles... but at the end of the day we have to take responsibilty for our own health and be aware of the dangers.

mark382 profile image
mark382 in reply to Kari1961

I'm only going out for shopping once a week to local Co-op, where it is a one way system and limited numbers in stores. Take dog out and if see anyone go the other way, very rare get within 3m of anyone. Tried to register with sainsbury as been on online customer for 15 years. Had automated message left on phone to say been identified as vulnerable and log into online account. Tried it for 2 weeks now and only get you haven't been identified as vulnerable. Not short of food for above reason and fortunately everyone in local Co-op acting responsibly. Yes it appears to be a complete lottery about letters. We have to what we have to do. Keep safe.

Jennytheb profile image
Jennytheb in reply to mark382

Hi, I did go to a Lidl last Thursday and no-one was paying any attention to distancing, even in the queue, it scared me a lot so I'm now not going shopping, luckily have hubby who will go shopping though he is also over age and Type 2 diabetic so not sure he should shop. My last Sainsbury shop delivered only 2/3 of what I ordered so that really didn't work. Difficult choices here. Take care all.

paintbox profile image
paintbox in reply to Kari1961

It's all very confusing how the vulnerable lists have been generated but we discovered that Sainsbury's access the government's vulnerable list, which wouldggest you have been assessed as vulnerable somewhere in this convoluted system of communication!! Conversely I received my letter so as I only registered with the gov then, I'm not yet showing on Sainsbury's list so my husband is going out for food. I hope you get clarity soon! ATB

Jennytheb profile image
Jennytheb in reply to paintbox

Same as me, though I am not too happy about him coming home with goods having mixed it in the shops? We are lucky I suppose to have help directly on hand. I got a letter from Sainsbury's with a vulnerable shopping slot then none available since. I can't be bothered to chase them up tbh. After all only 2/3 of what I ordered arrived so then hubby had to go out shopping elsewhere to get what was needed! Take care.

Garstongal profile image
Garstongal in reply to paintbox

I self-registered on advice from my surgery (who said I wasn’t classed as vulnerable by the drs there!). A couple of weeks later, I had an email from Iceland saying the gov had recognised me as vulnerable and they gave me a priority online shopping slot...

EleanorPV profile image
EleanorPV in reply to mark382

Hi Mark,

No letter for me (as yet). I have PV and on Pegasys.

In Scotland, I believe for MPN's it's the individual haematologist who created the first list. I've heard much of the information was out of date. The GP's have been asked to go through the list. As far as I can understand, the list hasn't been updated centrally. The supermarkets have received 1 list which hasn't been undated. I'm in a circle of the MSP directing my to my GP - Gp. Sending me back to the Government - gov sending me to crisis line -crisis line sending me back to GP.

This is a good safe place to rant.

Try to enjoy your Sunday.

We have Sun in Aberdeen.

mark382 profile image
mark382 in reply to EleanorPV

Many thanks for reply. Similar thing here in Wales. You get a link and it sends off somewhere else and then on a bit and back where you started. Just go round in circles.

Sunny here in North Wales. Have a good weekend.

Eadaoin profile image
Eadaoin

I still have no letter after registering online BUT I got a call from my local Council telling me I was on the list and offering me a food parcel !!!! As we are in Week 4 it’s just as well I have good friends who have been shopping for me. 🌈😂

eastwood1932 profile image
eastwood1932

Glad you got yours, I am ET triple negative, both my GP and my haematologist have told me over the phone they do not believe I am should get the letter. Seems to be down to interpretation by individual medics. Wish it was more black and white, how can one person be vulnerable but not another with the same cancer?

TrickyDicky profile image
TrickyDicky

Pleased you received the letter Jenny.

I’m a practice manager at a gp surgery, hopefully I can help give some information that may help. The criteria for shielding was defined for specific categories of patients, including those with blood cancer. Searches were run by the NHS nationally to identify the 1st cohort of patients who were sent letters. These searches weren’t able to identify all patients though so GPs and hospitals were asked to undertake their own searches and write to any patients they also identify.

Whether or not you have received a letter will depend to a degree on the approach the hospital or surgery has taken to identify those patients. I am under the care of two consultants- I’ve had a letter from one but not the other. I’ve contacted the consultant who sent me the letter and queried it. I’m aspirin only and venesection. Having spoken to them they’re happy for me to continue to work.

If you haven’t received a letter and you are concerned I would suggest you contact your consultant or alternatively your GP. There is also a self registration tool via the government website. This list then goes through to your GP for review.

Jennytheb profile image
Jennytheb

Many thanks for that helps sort the chaff!

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