UK ladies/gents, have you received your Government letters yet regarding guidelines for most vunerable people. My husband has diabetes and me with Stage 4 secondary have had nothing at all. Obviously we are taking all the necessary steps as advised but it’s something we should have to help us.
No Government letters: UK ladies/gents... - SHARE Metastatic ...
No Government letters
36 Replies
•
I received mine from my GP practice on Friday . If you haven’t received one by tomorrow , maybe phone your GP. Also look on the gov.uk site for extremely vulnerable covid19 as all the same info is on there for the time being . I can’t see diabetes as being on this list , but you will be under ‘people having other targeted cancer treatments which can affect the immune system ‘. Take care x
• in reply toTeddielottie
Thank you. Will try.
Hi,
I haven't received a letter either. I don't expect to, as I'm not on chemotherapy or targeted therapy. I did see certain cancers and cancer treatments mentioned on the gov.uk site, but nothing that relates to my personal situation. I would maybe wait another day or so and then ring your GP or oncology nurses to see if they can help.
Sophie
My GP told me I wont be getting a letter as I'm on palliative care, I'm so angry told him so it's ok if I get it then, he said no but you dont qualify for a letter
I would be bloody angry too...what a thing to say...hardly compassionate
I’ve had nothing from nhs but I only receive one of my drugs from my GP...the targeted therapy I get privately through my insurance
I went in today to the cancer clinic for my iron infusion...my temperature was taken before I went in...no staff were wearing masks or gloves and the place was running as normal
Barb xx
• in reply toKiera49
I don't live in UK (and in US they are not sending out letters), but I would imagine that the UK would have a copy of it posted online.
I'm on palliative care also but here in the US all that really means is that I am now seeing a pain specialist once a month for pain meds at the cancer center. I am supposed to be going to physical therapy, which is not an option in NY now obviously, and they are also closed. I had to have a meeting with a psychiatrist (part of the protocol) but I told him I did not want to continue to see him and I also see a nutritionist. So that is what palliative care here means.
What does palliative care mean in the UK, curious? I still see my onco the same as before, once a month for blood work, onco meeting and then infusions. I go this Thursday for my regular appt. which I cancelled three weeks ago.
I'm curious as to why your doctor said that. I would think the UK would have a copy printed online. It has to be a massive effort to mail people. But I guess they figure not all people (especially the elderly have access to a computer.)
Teddielottie• in reply to
Yes I think it is to ensure that everyone gets the advice , that is , to stay at home to support the NHS by slowing the spread , to wash their hands and shield the most vulnerable from the disease . PM has also announced that 30 million other letters / advice leaflets are being sent out to every home in Uk from this week !
Take care in NY ! Seeing it on the news daily here and it’s frightening ! x
• in reply toKiera49
Ridiculous aye!!!!!
If you are on Ibrance you are classed as ‘ extremely vulnerable ‘ as it affects our immune system and therefore you would be on the list , so think your GP is unaware !
See below I posted a copy of who is on the list last week . Take care x
Yes I would be on list onc said I am eligible doc knows about my ibrance says I cant be on list as I'm not curable
I saw my onc last week the office staff all had masks as well as the dr. He scheduled to see me in 3 months as my pet was no change nothing lightening up-stable . My tumor marker is 24 but I did get news that Ibrance would now be a tablet soon as soon as supply’s run out. Did you hear this? We have not received letters here in the U S about the virus. We are shelter in place at present . We are all in this together.🙏🌹
Great that you are stable ! I have read that Ibrance will soon be a tablet , instead of capsule . Not sure how soon we will get it in the UK , but US are changing over soon, I believe .
Keep safe ! x 💙
I suspect what they mean by palliative is that our treatment is not aimed at curing us, ...If that is the case all MBC is palliative ...
That isn't valid: I'm receiving palliative care, too, and I've received *that* letter, as well as multiple texts from NHS England. It could be that the immunotherapy I'm also undergoing qualifies me in some way for something I haven't quite figured out yet. Allegedly, I shall be benefiting from food parcels, priority online supermarket delivery slots and the like. I can confirm that none of that has come my way.
I received ‘the letter ‘ and most days I get a text from NHS England giving me their latest advice ! I have tried to register for Sainsbury’s priority online slots ( l am also a previous customer ) but they are extremely busy and phones always engaged ...Sainsbury's are going to be contacting us if we are on the government’s register of “extremely vulnerable” of catching Covid-19 and we want to have online delivery to our homes. You can read about it on the Sainsbury’s website . x
Yes, I shop at Sainsbury's regularly, too (or did before all the panic-buying set in), and I've been looking at Sainsbury's portal and calling their helpline routinely over the past few days. No joy. I wonder when they'll get the information they want from the government...
Just as well an Iceland slot magically opened up a few days ago: we'll need basics in again soon, so I'm counting on Sainsbury's to oblige soon! X
I’ve been doing the same ...but you never know how many are in the Sainsbury’s queue ‘! . I went on Boots The Chemist site the other day and their online site showed over 100,000 in the queue ahead of me !!!...so I got up at 3.30 am and tried again , and there was only a 9 minute waiting time ... so I ordered toiletries for daughter and self , and a few treats like face mask treatments for us ...they are due to arrive in 8 days time ! You were lucky to get an Iceland slot as we had tried and all the slots showing were taken ! Let me know if you have any luck with Sainsbury’s . Take care ! x
I've just managed to place an order with Sainsbury's! They're delivering on Sunday. Received a text from them this afternoon telling me they have confirmation from gov.uk that I'm on the extremely vulnerable list and that I'd be able to place an order within two days. Didn't have to wait that long in the end. Phew!
Have you had any luck?
Xx
Yes thanks and well done ! ... I had a text this afternoon saying ‘thanks for registering as a vulnerable customer and they will be back in touch tomorrow as working through lots of registrations ‘...so that sounds promising as I’m on the vulnerable list ! .
I felt the “April Fool” this morning tho ‘ ....like yourself , I saw a chance to order online with Iceland , as a weeks slots were available . So I booked one for tomorrow ... was so happy that I got carried away with ordering . I wanted some baking ingredients in , so daughter and I could bake . But I took too long listing the required ingredients from my recipe book and finding them on Iceland’s site , that by the time I had finished my order , I was over the hour limit they allow and I had lost my delivery slot for tomorrow ! And the rest of the weeks slots had gone in that hour !!! So no order !
It was my first time ever shopping at Iceland , and considering the slots are for elderly or extremely vulnerable , you would think they would give us more than the usual hour to set up/ place orders / give details of where to leave shopping for ‘non contact’ , for the first time using their online site ! I shared my experience with my family and my brother messaged me, ‘ yeah , they should give the elderly technophobes 24 hours ! ‘ .😂 I am only 56 but probably fall into the ‘technophobe ‘ category !!! But I can laugh about it now !
...And my Boots Chemist delivery is arriving tomorrow, 6 days earlier than stated ! So some good news ! Happy online shopping! Take care ! x
Oh, bravo! Finally some traction! 
I must confess I've been (more than a little) miffed with this entire process and for a while there I was convinced that they'd left me off *that* list or database and that I'd be consigned to a lifetime (or what's left of it) of never receiving a home delivery EVER again and having to beg neighbours or passing pedestrians for lumps of sugar. Or stacks of Jaffa cakes. Or mint Aeros (the sharing bars, naturally, though sharing is sacrilege).
If the text hadn't arrived today, I was in danger of Making Myself A Nuisance and writing to my local paper and MP. Not necessarily in that order.
In the end, it was a bit of an anti-climax, as I hurried somewhat through my order so that I wouldn't time out (so sorry you've just had that happen to you!) and once it had gone through, I realised there were about 12 items I'd forgotten entirely 
We only get to place one order a week, so those 12 items will just have to sit on a new list and wait a while.
The order I placed with Iceland about a week ago (possibly more) was, like you, the first order I'd ever placed with them online. I'd have to say I wouldn't necessarily shop with them online again - unless I really didn't have any other options. I'm not sure what it is about that particular supermarket chain: I just don't feel like I've done a shop, if you know what I mean? Weird, I know. It's probably just me. Although some of their chilled (not frozen) stuff is definitely a bit dodgy (their own-brand potato salad, cheddar cheese and trifle, for instance, are most odd).
They did come to my rescue when I needed them, though, so I AM grateful... (like you, I timed out - TWICE!!)
I'm routinely accused (by my children) of being a technophobe, too, but then I remind them, ever-so-slightly passive-aggressively, that I taught them a) how to use a spoon, b) how to blow bubblegum bubbles (an abiding joy) and c) how to wipe their bum/s. That normally shuts them up. Especially when I threaten to post my assessment of their skills in those particular areas on Instagram/Twitter/insert social media platform of choice. )
And don't ever let ANYONE tell you you're getting on a bit: you're only a couple of years older than I am, and I'm going on 17 in my head. We are only as old as we feel! Mind you, having said that, I wear each laughter line with pride - and I felt quite grown-up when, last year, I finally started to browse the age-defying product ranges aimed at "mature" ladies gracing the shelves in Superdrug.
Speaking of Superdrug, I have an order arriving in a couple of days! All this online shopping could go to my head!
Yaaaaaayyyy on Boots delivering early! A well-deserved bonus for you 
Enjoy
💙
Morning ! Your post made me chuckle ...which is a good thing in these terrible times ! And the lesson learned ,as inexperienced online shoppers , is , ‘ if you’re doing an online shop , you still need a shopping list !’x 😂
Any U.K. ladies on here ( In the over 70’s or on the ‘ extremely vulnerable for the virus’ gov.uk list ) , should register with Sainsburys online , and /or Iceland !
Keep safe everyone on here ! x
We've got to keep our sense of humour intact during these odd, troubled times just to get from day to day unscathed and relatively sane!
Stay safe! XX
• in reply toTheDrivenSnow
This is such a good read. Has lifted me no end. I haven’t registered yet and I’m not looking forward to having to do it but hey ho. Needs must. Thanks for making me smile. Cheryl
TheDrivenSnow• in reply to
I did Morrisons and was 25,698th in the queue 👀. Didnt bother. x
Eek!!
Not sure what palliative care means still see onc as normal and have treatment every 3 months and that's it. It's not as if there doing nothing. My hospital in macmillian, cancer unit wernt wearing masks or gloves either. I thought palliative care was when they couldn't give you any more treatment
• in reply toKiera49
In US, it used to be like the final stage before hospice but things have changed in the years. Now many cancers centers find allowing patients to access palliative care for pain, emotion and spiritual support works much better if they have access to it before they reach the point of stopping treatment.
So nothing changed with my onco. It is just that this pain specialist takes care of writing the opiates for me and monitoring me in conjunction with my onc.
Well, my onco emailed me. The Cancer Center is trying NOT to have any of us coming unless absolutely necessary. I get my Verzenio mailed to me so I Just got another month supply for me it would just have been blood work and the injections. And I dont care if I miss a month of shots.
My onco wrote that the cancer center's palliative pain specialist, Dr. Egan, who I have been seeing for three months (She previously worked in hospice for like 15 years) has been removed from the Cancer Center and sent over to work in the actual hospital (about 15 minutes ago). I did not need to ask why.
So my onco said she will get back in touch with me but I expect Thursday's appt. to be cancelled bc they only want really the patients that need chemo coming in and and doing all other visits via phone.
So the pain specialists voicemail said she would not be responding to any messages left on the machine and that any medication we need, we need to have our onco write.
My onco emails that that she will contact Dr. Egan to fill in my prescription but I doubt Dr. Egan has the time and I think BY LAW here in the US, a doctor has to see you in person in order to be able to write a prescription for opiates.
Unless due to the crisis we are having in NY, maybe they are lessening the restrictions on having to see the patient in person and allowing it to be done on the phone.
Things change day to day so I assume I will be cancelled for Thursday and not sure whether or not I can get my pain medication bc if Dr. Egan is now working at the hospital due to the virus, I doubt she has time to write prescriptions for all the cancer pain patients she had.
Not sure if my onco would write it. I don't know what is going on but if they are trying to keep people out of the cancer center, I think at least the injections are going to stop for a while but I can still get my meds.
Every day new changes.
Yes me also
Morning. I received the letter last week and the text before... I am not sure where they get their contacts from because they are sending it to a phone which is the one I gave to my hospital/ GP...🤔
I did not think I was going to get it as I has not started IV chemo by then ....
Ok. Thanks. I’m going to ring the GP nurse today.
Hi
Yes, I dud receive my letters, even the one about 'you can now keave the house' bla, bla. However, I do think someone somewhere is falling short on actually reaching everyone concerned. It's high time Macmillan did something about this as they are our link to getting proper palliative care. Or you could give the onvologist an earful.
Make some noise. Let your voice be heard.
May sound a bit silly but I can afford to at this stage when time is so limited for us .
😁Cherie
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