NHS letter: I've only just received the letter... - MPN Voice

MPN Voice
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NHS letter

hall2
hall2

I've only just received the letter this morning which seems very late compared to other people! I'd assumed I wouldn't need to self-isolate for 12 weeks so its a bit of a blow! Did anyone else receive it so late?

67 Replies
oldestnewest

Yes received mine from the Hospital on Tuesday morning. Have June 22nd circled on my calendar, although not sure how much will have changed by then.

Hi, I still haven't received a letter

Linda

No letter for me yet

Still haven't received a letter, although I'm well over 80! Have filled in the form to self register but no reply as yet.

Thanks for replies everybody, I'm surpprised that letters are still going out!

Yes they're still being sent out. People who weren't on the NHS list as high risk are now being added by GPS who may be in the category including Mpn Patients. I spoke with my surgery this morning and they told me i had been added onto the list and they were trying to get letters out as soon as possible.

Take care all.

Eadaoin
Eadaoin
in reply to poly2

I registered online on Gov.uk after reading MPN Voice from Guy’s which clarified it all. Was speaking to my Surgery Receptionist and at the same time if I should let the doctor know that I should have the Gov. letter. She said “No. That’s got nothing to do with us.”

Bromley
Bromley
in reply to Eadaoin

I had exactly the same response. I registered on line and at the end it tells you to inform your Dr. After the previous response I haven’t bothered. I will wait and see. Good to hear that people are still receiving letters.

I still have not received mine, even though I have been told I would. But I have already been self isolating for three weeks now.

If I have not received by Monday I will call my GP so I can go on their lists.

Hi,I have not got the letter yet and I don't really think I will. I have MF,take Hydroxycarbamide and work as dental nurse. I rang my doc but there are no indications that I would be more vulnerable than anyone else...I was told so that's that. Funny that, as I always get a phonecall telling me I should have the flu jab....

Melanie66
Melanie66
in reply to Swede

Hello ... I was informed that anyone with any MPN is high risk.....also high because hydroxycarbomide lowers immunity .... can only say to you what I have been told via haematology Nurse ..... stay safe ... Lainie xx

thanks for your reply.

I have CALR+ ET. I went onto the .gov.uk site and completed the form as I wasn't sure whether I would be within the category of "extremely vulnerable" or even if they knew of me. I received a text saying they had received my on-line registration and then the letter came this morning. I think they have over 1.5 million people to contact so it will take a while. If you've not done so, do register on-line to be sure they are aware of you.

Irishgal12
Irishgal12
in reply to AnitaJ

So we have to register online?

hall2
hall2
in reply to Irishgal12

Some people have but others have had letters via GPS and hospitals.

Irishgal12
Irishgal12
in reply to hall2

No letter here

Jackgirl10
Jackgirl10
in reply to AnitaJ

Only England using this method to register I believe.

Don't think this is only for England I am in Scotland and I phoned my GPS surgery and was told that the letter was posted still waiting must be coming via Australia!!

Monkobutlers
Monkobutlers
in reply to AnitaJ

Where do we register? Can you post a link? Thanks.

Monkobutlers
Monkobutlers
in reply to hall2

Thank you. I’m passing it to my Mother. She has ET and is on anagrelide. ( Hydroxy side affects were not good)

Hi, I sent the online form on March 28. I received an email on April 1st? Which said the following : We will share your details with the NHS

If the NHS defines you as clinically extremely vulnerable, the NHS will contact you. Your GP will be informed.

If you told us you need help getting food and supplies, but you are not on the clinically extremely vulnerable list, we'll share your details with supermarkets. They may be able to help .

I'm 73, had ET for the past 10 years on Hu and aspirin.

David

Yes I received mine Wednesday. From my NHS Hospital.

Hi I’m 43 with PV JAK2 and the start of MF . I’m on Ruxolitinib and haven’t had my letter.

Michelle

hall2
hall2
in reply to MamPRV

Hi Michelle it sounds as though you’re more at risk than me so you should get one!

I had my routine blood check 2 weeks ago and was told by the nurse that I was high risk because of the medication. I then phoned the doctors surgery to which I was told that they didn’t send out the letters. I have also went on the NHS website to enrol on there. Still nothing. I’m self isolating anyway but Like lots of people on this forum a letter would help to give to my employer. Thanks for your advice

I've been told the same thing.

I did receive a phonecall from my doctor on the first Monday that these notifications were going telling me to stay at home and not to go anywhere other than my garden for fresh air (feel so sorry for those without gardens who have to shield) but I've still received no physical letter even though my doctor's first words during a phone appointment were "You're not going out are you?!".

I phoned my surgery on 30th as my employer needs my letter to process my pay (although I've just had a call from my work telling me they've furloughed me for 3 weeks and then will re-assess anyway, so not really sure where I stand with things) and my surgery also said that they've "been told not to send out letters but our doctors have a huge pile of names to add to the list, so it may take a while and some people may not get letters even then. None of us really know what's going on to be honest"

She advised me to self-register on the Government/NHS vulnerable list but I've had no acknowledgement there either - it's like I don't exist

I have been told by my GP surgery they are not sending any letters out, so don’t know where they come from.

I have not received a letter, nor will I be receiving one. I have been on hu for a year and my last blood count has shown my white blood cells and neutrophils drop to the low side of normal. I actually got cellulitis after a gash on my knee due to my compromised immune system. I was hospitalised for pulmonary embolism and infection a couple of years ago. My gp says that they feel I don’t need to be added to the vulnerable list as I am only at risk. I am fortunate that I have been furloughed and can stay away from people, if not I would have had a problem with work.

No letter for me.

Jeanne

No letter for me either. I have registered and had a response from GOV who said NHS or GP would be contacting me. I phoned GP who said what made me think I was at risk!! I am 80 have ET JAK2 and Polymyalgia Rhumatica and take Hydroxycarbamide Aspirin and been on Prednisolone (steroids) for 10 years!! I find it all very confusing. I live on my own and have to do my own shopping.

My wife got her letter from the Welsh government yesterday the 3rd yet it was dated the 24th March!

Out of interest has your wife got mpn and what medication is she on? My GP seems totally unaware of any lists or letters when I queried if I should have one. Ta ps also in wales

Yes she has myelofibrosis and on Anagrelide and hydroxy, also no spleen! The letter is really a waste of paper and a stamp. It does give you the guidelines which we have observed in the main. But as we are very rural we don't see anyone anyway. I do the shopping and mask up with gloves and goggles when I go. My mask is home made with eight layers of fine copper wire mesh within it.

Thanks for your reply. That's clever I was just listening to an interview where they mentioned copper being toxic to the virus. Keep well.

It seems as though there's quite a mixed pattern here! Some people not being regarded as vulnerable when surely they should be!

My partner and I still haven't received a letter but it doesn't matter now because I have placed my shopping order with Sainsbury's. I just hope I'll be able to get a slot next time as well. I can't understand how the page with all the slots taken just suddenly mostly cleared. I hope you are able to shop online too.

hall2
hall2
in reply to MaggieSylvie

How did you manage that? 've spent ages trying to phone Sainsbury's I'm a regular customer but I can't get anywhere and they're not taking online registrations!

MaggieSylvie
MaggieSylvie
in reply to hall2

I was forced to go to Sainsbury's to stock up on Tuesday and the first thing I did was to go to Customer Services. I told them we were both over 75 and had underlying conditions and after first saying they couldn't help, they got on the phone to another colleague. They then said that I would receive a phone call. I didn't get a phone call, but I just went online, where I already had a virtual trolley loaded up, and there were slots (Haverhill, Suffolk branch). They did put a message on their site to ask younger people without underlying health issues to do their shopping in person to allow us to shop on line, so perhaps this has worked. I was already a customer, so perhaps I wouldn't have had so much success if I had to register from scratch. I don't know what Tesco are doing, as the last time I was on, they had no slots and then started emptying my trolley for other people! Out of curiosity, I shall have a look.

hall2
hall2
in reply to MaggieSylvie

Ok thanks for your reply. I'll just have to keep trying!

MaggieSylvie
MaggieSylvie
in reply to hall2

I think so. One day there were no slots for three weeks, and the next there was quite a lot for within a day or two, with different delivery fees. I couldn't check what there is today because I already have my order placed (and am adding to it).

hall2
hall2
in reply to MaggieSylvie

Well I just can't get anywhere!

MaggieSylvie
MaggieSylvie
in reply to hall2

How are you getting your groceries?

hall2
hall2
in reply to MaggieSylvie

My sister and her husband are doing it and are very happy to do so but I’d like to make it so that all they have to do is get me the odd thing if I run out between main shops!

MaggieSylvie
MaggieSylvie
in reply to hall2

It's not so easy, is it?

I've not had any post for 10 days. Postmen are hugely down in numbers. They are overwhelmed.

I haven't received a letter as yet but expect to in the next few days as I have had a few texts indicating as such. I really don't want one as going out for a walk each day is the only thing that keeps me sane as I live alone, but hey ho. Interestingly I had my bloods done at the end of February just as Covid-19 was rearing its ugly head. I asked my specialist nurse whether I would be at increased risk, I do take hydroxycarbamide, but she said not particularly as my bloods were all in the right place and because I had been stable for so long my testing could move out to every 4 months rather than 3. She said just be sensible and follow all the guidelines which is what I have been doing. Really not sure how I will cope with " house arrest ".

hall2
hall2
in reply to RJJ2

Perhaps you could go out really early before everyone else is up and about?

No change at Tesco - no slots, but they are opening early especially for us!

I got my letter last week so registered on GOV.UK but I haven’t received the text from Sainsbury’s yet saying they have been informed I might need help with food deliveries. Has anybody else had the text?

hall2
hall2
in reply to jillydabrat

I haven’t had a text but I only got the letter yesterday so maybe a bit early! They’re probably inundated!

jillydabrat
jillydabrat
in reply to hall2

Just had my first text from Asda. They are setting up my priority account within the next 2 days. I got my letter on Wednesday so it took 3 days to get the text xx

hall2
hall2
in reply to jillydabrat

Ok that’s great I hope Sainsburys get in touch then! Take care.

jillydabrat
jillydabrat
in reply to hall2

Asda said I would be receiving messages from other companies but could I please only use one so I am waiting for Sainsbury’s as well x

Vtr1000
Vtr1000
in reply to jillydabrat

Glad to here your shopping is being sorted. One less thing to worry about.

poly2
poly2
in reply to jillydabrat

Hi all. Little confused. I registered on the gov.co site and received an email from sainsburys to say i had been identified as extremely vulnerable so I could get home delivery but still not received a letter from NHS. Spoke to surgery on Friday and she said i was on the list. Still no letter for work. I have rang the surgery again and now they say I'm not on the list. Rang haematology secretary and she said the surgery should have added me on to the high risk list. Now I'm waiting for a call back from the surgery for answers. Any one else out there having the same problem. Proper stressing me out now.

hall2
hall2
in reply to poly2

Sounds like the whole system is screwed up, I can't get anything from Sainsbury's!

poly2
poly2
in reply to hall2

Agree with you totally. It seems i can get my shopping delivered but I can't get paid from work without the dreaded letter. The GP gave me a sick note for 12 weeks but my employer will only pay ssp without the letter. I thought i was getting somewhere but now I'm ready to just give up with it all.

amhann
amhann
in reply to hall2

Me neither (have now got 3 letters dating from 21 March telling me how extremely vulnerable I am + registered on the .gov site but clearly still not identified by any of the supermarkets) - I may try the phone line, but only when I’m not stressing!!

I got letter from NHS Scotland this morning - I have PV and on ruxolitinib.

I live on my own but my two sons are happy to get my shopping as they both live close by. I’m pretty gutted at not being able to see my granddaughter for 12 weeks. Didn’t think I would receive one. Keep safe everyone.

Anna

hall2
hall2
in reply to S031251

I know how you feel. My daughter lives about an hour away and I can't see her except on FaceTime! She's getting married in July and we're worried about how things will affect that? Take care.

Yes I got my letter last week, it is a shock to see it in writing that we have to stay in for 12 weeks, I’m glad I have my garden. I’m sticking to the rules and not going anywhere until June.

hall2
hall2
in reply to wendycu

Yes that will be me too! I'm lucky to have a garden. I've found a good exercise routine on YouTube. I usually walk several times a week. Take care.

Yes me too thank goodness for my garden and I have a couple of DVD’s to exercise too

Anna

My husband has CMML and has not received a letter yet. I have registered him on Gov,co.uk but no text yet either. We have been isolating for 3 weeks. It is worrying as I don't want to be doing this if we don't have to.

I have not received one either. Have et jak2 + take hydroxy and clopidogrel, I am also 70.

No I haven't had one either. 84 and ET and had breast cancer in 2018.

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