Am new to this site, but hope I am able to make a very useful contribution
Spoke to my GP on the phone today after my son and wife, both hospital doctors, said that my condition and medication make me high risk . I am on Hydoxycarbamide for ET.
He agreed that I was definitely high risk as 1) ET is a blood cancer 2)I am on active chemotherapy 3) I have a rare disease. All three are listed as high risk. The Government list was produced rapidly, with various contributors (not GPs). GPs are going to contribute in the coming days apparently.
Anyway, the GOOD NEWS is that my GP had literally just discovered that you can add yourself to the list! Have your NHS number ready - this is the link:-
gov.uk/coronavirus-extremel...
Sainsbury's are going to use this list soon to update their database of high risk/vulnerable customers who get priority for home delivery of shopping.
Hope this helps
Denise
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denisep12
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That’s good - was going to say ooops the search should be Coronavirus extremely vulnerable - glad you’ve found it (I don’t need help for now, but if needs be I’ll go back to them) - stay safe. Anne-Marie xxx
Hi jellybean - glad you have managed to find it. I did check the link after I posted it and it worked fine, so possibly a gliche? As long as you got there in the end D x
They all say they are taking on extra staff and drivers. The times at which they can deliver have been extended. Hopefully people who have stashed the equivalent of a supermarket in their homes cannot fit in any more, so things may calm and service improve a little. Just need to hope and stay positive. Denise
Useless if you're in Scotland. Apparently UK doesn't actually include NHS Scotland. I wasn't aware that Sturgeon and her plastic parliament had got independence yet. Absolute joke. Well done Scotland, 30 years behind the times as usual.
Trying to get independence at any cost? Nothing else seems to matter. The roads are a disgrace, they're building 'affordable' housing all over the country which most people can't actually afford, and they don't listen to the population or the electorate. As a resident and tax payer of Scotland of 11 years I'm disgusted.
Good call Denise, well done on your research, I have registered, dont need help yet but depends on how long it goes on. My husband and I are carers for my 48 year old son, who eats a lot so our food will need replenishing soon, but I do not want to go to the shops. This is going to be very useful Thank you.
You are very welcome. Sainsbury’s now have a recorded message giving the same info and advising to register. Hope it has some effect.
My mother-in-law is almost 90 and lives some distance away. Trying to get her a delivery slot is a nightmare. Hover over the site at midnight and use your superhuman powers to try to get in quick before all slots booked within 3 seconds!! I have done it once with Asda so it is possible but hard. No time to dither and choose, you just have to dive in there! Have to see a funny side to it, even though it seems to be dominating our lives at the moment.
My son and daughter in law as doctors are having a much tougher time, so mustn’t complain.
Find something online or on tv that makes you laugh. Absolutely essential for all of us.
Hi Sandy, I have both conditions like you also same meds. I spoke with my haemo last Thursday as she said I didn’t need to take any extra measures than I would for diabetes.
Nothing came of my registration with the government department but I have just phoned Sainsbury's on 0800953 4988 to register with them. You have to be over 70 and press buttons. You need dob and nectar card number. It might take two days to register. I already have my trolley full and have been waiting for over a week for a slot so hopefully I won't have to start again. This option with Sainsbury's has only come up today.
Did you manage this today? I went through all the options this morning only for recorded voice to say phoneline shut till 8am on Monday. Said if not over 70 you could also register if in very vulnerable group, but would have to be prepared to answer personal questions.
I pressed options for Scotland, where we can't register with Gov.UK and still nothing on Scottish Government website to help. So possibly Sainsbury's dealing with it differently here?
Just for information my appt this week was done over the phone. Consultant unprompted told me to self isolate - I asked if this was because I was on Ruxolitinib and he said more because I have MF Intermediate 2 - said it was all very unclear ( as many posted here have commented ) and because of it being a new virus i.e. jury was out about our vulnerability. I appreciated his honesty - what a tough job they have.
Shielding letter has not arrived yet. I registered with gov.uk several days ago but have heard nothing. Put Sainsbury's right today, on the phone number I put in my last post. They are only interested in you being over 70 and they verify that over the weekend. So I expect to be able to place my order before I run out of food again. Hopeful. I wouldn't think the extra questions you have to answer would be that difficult. I think it helps if you are already an online customer and have a Nectar card but no feedback is given on this.
Many thanks - looks as if in Scotland things are being dealt with differently by Sainsbury's as just after pressing many options said phoneline not in use till Monday and disconnected me! I will try number again in case situation changed from 9am - same one you posted but then of course different choice of country on options.
No idea if we're getting shielding letters here - wonder if any Scottish forum members have had one? Was so busy going over drugs etc with consultant only thought about this when put phone down. Not worried about questions -from recorded message it was clear they are worried about people misusing service - oh dear. Thank you again - hope you get a slot soon.
I registered several days ago but don't know what it's going to do for me. The only benefit seems to be priority delivery slots for online grocery deliveries but I don't buy groceries online so that's not going to help me. I haven't had a shielding letter. I am PV jak 2 positive on ruxolitinib.
if you have a payment card, go online with your nearest supermarkets and try placing an order. Now is the time to do this. We have no way of knowing what the government will send us or when that scheme will start. You have more control over Tesco etc.
Typically the site asks where you are and when you say wales it states they are not using the same method and you have to wait for a letter. So much for being United!
Hi Denise thanks for informing us about that Registration .I also have the same diagnosis and treatment as you and was expecting a letter as my employer has requested this. If I don't get a letter I will have to see if my doctor can help
A shame your employer is being so pedantic. Mine accepted my word on this as I too don’t have a letter. Hopefully your GP will help. In the meantime , you could try printing out from websites, that Hydroxycarbamide is an immunosuppressant and that ET is a blood cancer and quite rare. Print the government guidelines which list all 3 things as reasons to shield for 12 weeks and if necessary show him your meds with your name in as proof. Worth trying.
Thanks for that. My husband has been nitufued that he is extremely vulnerable and has been sent the link to register. On the Q&A did you select the option to indicate you had no means of getting food? I didn’t want to say I had no means of getting food in case it triggered them sending a food parcel. I just want to register my husband so we can get an on line shopping/delivery slot.
Hello joe500 - just to say I did the .gov register so that I could set up for on line shopping but appears because I didn’t say I had no means of getting shopping my details have not (+ presumably will not) been passed to Sainsbury’s for priority shopping (I really only want to go online if needs be in future weeks - I am classed as extremely vulnerable but most certainly do not want to take up a place from someone more in need) Anne- Marie.
Hi joe500 - oh pants! am now thinking I may have triggered a food parcel so have changed my ‘no one to help’ answer and will hope that the lists winging their way to Sainsbury will eventually include me - like you I just want to be able to register if I really don’t have anyone to help at some point. Anne-Marie.
I registered last week and still could not access Sainsbury’s site. I went back on the Government registration site 3 days ago and re registered this time as being unable to get supplies(or however it is worded). Within 2 days I was able to book a Sainsbury’s slot, so am convinced that ticking that box makes all the difference. I don’t know about the free food parcel. I agree I don’t need one but would hope that a little bit of checking would occur before someone turns up with free rations!
I can only reiterate again what both my son, a doctor and GP have said that with ET, on hydroxycarbamide, I am immunosuppressed and would likely get seriously ill with C-19. I must not go out nor must my husband.
I can only suggest that you all do as I have and protect yourself plus don’t become yet another patient filling our hospitals.
I have just successfully placed an order with Sainsbury’s, so I assume this is what worked:
On gov register I did not select option to say I had no one I could ask to do shopping (didn’t want to trigger them sending us a food parcel)
I rang Sainsbury’s on Friday on 08009534988and answered their automated questions . Needed my nectar card number . I haven’t received an e-mail from them to confirm I’m registered as vulnerable with them but when I logged in with them today, I was able to shop and arrange a delivery for tomorrow. Hope this is helpful.
Well done you for getting through to Sainsbury's. I have tried on many occasions, most of which resulted in the call ending automatically (system overload) or never getting answered.
I am pleased you now have a Sainsbury's delivery booked. I would hope that, considering Sainsbury's have access to the Government's 'extremely vulnerable' list, that likewise, the Government might have access to data on who have had shopping deliveries and not just operate a 'food parcel for all' policy? Or is that being too clever? Ha ha. The text I received from the Government did say "we'll share your details with supermarkets. They may be able to help. If you need support urgently, please contact your local authority." So this makes me think food parcels are not automatic.
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