How to register as high risk if you have not already been informed that you are on the register

[denisep12]

Hi all,

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

[Jellybean129]

Thanks for the info Denise. I've tried to click on the link but nothing happens.....

Gill

[amhann in reply to Jellybean129]

Hello jellybean - if you google Coronavirus extremely high risk the .gov registration site should come up - I’ve just filled it in. Best Anne-Marie xx

[Jellybean129 in reply to amhann]

Hi Anne-Marie. You beat me to it! I've just done it.

Thanks for the heads up

Gill xx

[amhann in reply to Jellybean129]

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

[denisep12 in reply to Jellybean129]

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

[denisep12 in reply to denisep12]

...but now I look at it the link is now incomplete!!! it should be

gov.uk/coronavirus-extremel...

[denisep12 in reply to denisep12]

I have just clicked on the link and it works. Hurrah!

[Judypinner]

Thank you so much for this. Judy

[ETphonehome]

Only available in England😞

[MarkD6701]

Just registered. With 1.5 million in the vulnerable category I wonder how the supermarkets can make more slots available?

[denisep12 in reply to MarkD6701]

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

[RobPV]

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.

[DonaldOrr in reply to RobPV]

Makes you wonder what on earth they are doing in Holyrood.

[RobPV in reply to DonaldOrr]

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.

[RobPV in reply to DonaldOrr]

Why is it still called the United kingdom if clearly its not united?

[JP1952]

Unfortunately, does not work in Wales either.

[Hydrox]

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.

[Stevesmum42]

Thank you Denise. Well you nailed the great contribution box, flying colours.

I have not had a letter, same condition and meds as you + diabetes.

Tried to get Sainsbury’s to deliver but not previously listed myself as ‘ vulnerable’ so no joy from them.

But now I know how to do it 🤗 so thank you very much.

Keep well

Sandy x

[denisep12 in reply to Stevesmum42]

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.

D x

[Vtr1000 in reply to Stevesmum42]

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.

[Sallush]

Thank you!

[MaggieSylvie]

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.

[Hidden in reply to MaggieSylvie]

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.

[MaggieSylvie in reply to Hidden]

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.

[Hidden in reply to MaggieSylvie]

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.

[MaggieSylvie in reply to Hidden]

It's Saturday. perhaps you didn't phone them early enough.

[Hidden in reply to MaggieSylvie]

No tried at 9 am - will try again in case situation changed! Many thanks.

[MCW22]

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.

[MaggieSylvie in reply to MCW22]

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.

[Graham_uk]

Denise thank you for this information. Can you please copy the whole web link as I can not access what you have entered

Thank you

[denisep12 in reply to Graham_uk]

Hi Graham

It is gov.uk/corinavirus-extremel...

Technology can be very annoying at times!!

I keep typing it in correctly. Hope you are successful this time. If not, just go to the gov.uk website and search extremely vulnerable from there.

Fingers crossed!!!

Denise

[Jackgirl10]

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!

[Jahill]

Hi Denise thanks for posting that information about the registration as I

[Jahill in reply to Jahill]

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

[denisep12 in reply to Jahill]

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.

Good luck

Denise

[Jahill in reply to denisep12]

Thanks again I will act accordingly if my doctor can't help

[Fika500]

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.

[amhann in reply to Fika500]

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.

[amhann in reply to Fika500]

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.

[denisep12]

Hi all

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.

Take care all x

[Fika500]

Thank you Denise. I think I’ll phone them but any difficulty getting through will just re-register as you did.

Ann-Marie ..... looks like you may need to re-register again!! Or wait and see what happens when I try to phone . Will keep you updated .

[amhann in reply to Fika500]

Ta muchley x

[Fika500 in reply to amhann]

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.

[amhann in reply to Fika500]

Wow! thanks so much - will give it a whirl. Best Anne-Marie x

[denisep12 in reply to Fika500]

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.

Take care

Denise