Some of my group members have bought this to my attention, having heard about it themselves via a Myositis support group on Facebook.
Some people in England have received messages from Sainsbury’s telling them they are on the Government’s vulnerable list so they can be given priority for online shopping and home delivery slots.
Another friend, got an email from Tesco with information about the scheme they are running if you are on the vulnerable list. So my friend emailed Tesco Customer Service and said Wales do not seem to have one of these government vulnerable list, so how can I get a priority delivery slot in Wales. They replied with a link - but it was to the English list, which welsh citizens cannot be on. So they’d sent her on a wild goose chase. If you live in Wales you can’t get on this list.
Does anyone else know anything about this vulnerable list if you live in England, that means you can get priority delivery slots?
Or anyone from Wales have any knowledge of such a list or scheme?
Just very curious.
Thanks.
Wendy
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They say they are working hard with the devolved governments to work this out.
Due to the fact Welsh NHS don’t seem to keep computer records for stats of lupus patients, RA patients etc, it’s hardly surprising that they can’t provide a comprehensive list of vulnerable people in Wales for this purpose.
Oddly enough I got an email from Sainsbury’s myself. I think it’s if you have registered on the government website for food packages gov.uk/coronavirus
One from your local health authority which is addressed to a named person with your Hospital Number &NHS Number entitled COVID-19 Advice for Rheumatology Patients,...with a flow chart on the last page ....where you decide which category you fit in.....that is not the letter you need for supermarket deliveries.
The other letter is from your doctor/consultant [I think- I haven’t had that letter yet] stating you are vulnerable.
In England these letters were delayed because of Data protection...releasing names/addresses without permission.
That is slowly being sorted....don’t know if that applies in Wales...but might be a reason you aren’t having much luck with getting on supermarket shopping lists?
If it’s any consolation....it’s seems a real muddle everywhere.
The registration isn't just for food parcels - not in England anyway. If you are struggling they are telling you to contact the local authority - they are supposed to have some form of back up group and should know how you go about it.
Hi Wendy, I received an email from Ocado stating that I was a vulnerable customer and as such I have been allocated a shopping slot once a fortnight without the online queueing.. I have no idea how they knew or from where they drew that conclusion but I am very grateful xx
I did wonder how they are getting people’s emails or mobile numbers?
One of my members tried to register for Tesco but the system would only allow addresses in England.
I really want to get to the bottom of this now.
Thank you.
Hope you are doing OK.
By the way, where I live I can only get Asda or Tesco deliveries. Sainsbury’s and Morrison’s don’t deliver here and nor do Ocado. So it makes it even trickier!
I was shocked to get the email. I told people on Facebook and people got really annoyed because they were sicker than me and had not had the email 🤨. I have no idea how they put me in the vulnerable category. I hope the supermarkets can set a precedent for all of us now though. I am ok. Having a rough day today, Ocado substituted my minestrone soup for tomato basil and miso. Omg what an abomination!! Vile, disgusting stuff. Five hours after two mouthfuls and I am still burping with acid reflux and cannot get rid of the taste despite cleaning my teeth. 🤢🤢🤢🤮🤮🤮. How are you doing? Xx
Well you seem to be an exception to the rule! I a, very pleased that you've had this lucky break with deliveries. You deserve some luck. xx
According to AgedCrone above there are two letters. So maybe on one of the system's you got flagged up. I have heard from members that have contacted their GPs surgery to ask where their letter is (some need as confirmation for employers that they are to self isolate for 12 weeks and wont be returning to work after the lock down finishes) that the GPs are indeed supposed to be going through patient lists manually to detect people they consider vulnerable. So if WAG / NHS Wales are doing a list and GPs are doube checking no one slips through the net, you would expect all to be covered eventually. But only time will tell.
Like I say, unfortunately despite one of my members getting the 2 letters, she cannot register for priority Tesco slots - you need an address in England.
One thing is for sure, NHS England with their list, should make it quicker and easier there. In theory.
With everything the GP surgeries are dealing with right now, I bet they are snowed under dealing with this issue of letters too.
I do understand that supermarkets are dealing wit the biggest demand for their delivery services ever and they are actively advertising and recruiting to meet the demand. No one can expect it to be perfect over night.
The other night I set my alarm clock for 11.50pm to get up and get a Tesco delivery slot. I got my lap top on straight away and I was put in an online queue. Tesco don't tell you how many are in front of you nor how long in time, the queue is. It took 45 minutes and then the first slot I could get was in 3 weeks time.
Whilst I was in the queue, I opened up Asda and Morrison's (they don't deliver in my area but I was curious). Both had online queues. Morrison's tell you how many people are in front of you - tens of thousands.
Of course with Tesco, you are limited to 80 items as well. So 3 weeks wait and then 80 items for a family of 5 is nothing.
I am lucky that there are a handful of local independent shops now doing home deliveries, free of charge and so we aren't starving, but for example, the farm shops are not cheap and a little shop can cost 2 or 3 times as much. Plus you cannot buy all of what you need from them.
I always forget when it gets to school holidays and having the kids around all day, how much the 3 of them eat. You can imagine with 2 boys aged 16 and 14 and my daughter had a good appetite too - aged 12. We are running out of a lot of stuff regularly.
But we're coping. Plus I am lucky that I can cover the additional costs, especially when the children are having no after school clubs, tennis, drama etc, and we are not using as much fuel - the savings in these are covering the extra food costs. So we are fortunate.
I know a few in my group who can't get delivery slots and cannot afford the local independent food for family shopping. Forcing them to brave the shops.
The soup sounds awful! I just can't imagine those flavours going together. Yuck. I have been making soups though. Always a winner.
Hope you've got rid of that taste and indegestion!
I know Wendy before Ocado put me on the vulnerable list I tried to get on to edit my order and I was number 1,389 in the queue!! Four hours later I was given 15 minutes to edit it. Then they sent me an email to say I would be given a link to have no queue and then that I could get a slot every two weeks. I am sure that the other supermarkets in Wales will have to follow suit. I am so fortunate as I have a carer nine hours a week under the Direct Payments Scheme and she is able to get things like milk for my husband and fresh veg. It has been hilarious this past fortnight as I think everyone is running around looking for yeast for me to make my bread. Thankfully yesterday two people got some, a lump of fresh yeast and a packet of dried yeast. I made a lovely fresh granary loaf so I am very happy. Lemon bunt cake in the oven and a big roasting tray of veg ready to go in. I really hope that everyone is staying safe and well. There are so many idiots out there. Apparently the Aneurin Bevan Healthboard is worse hit xxx
I love bread making but have now flour right now. But I have yeast.
It seems that Wales has now handed over the data to 3 supermarkets and the rest will now follow, I think they said a further 8 supermarkets for deliveries.
Fingers crossed!!!
Many still without letters though.
I replied to someone else post recently and commented on AB Health Board.
There were many large social gatherings just before lock down that meant that many in the area caught it.
I know 3 people who have had and are recovering. All managed at home, but a friend nearly called an ambulance for her husband one night as she was so concerned about him. Luckily he turned a corner. But she said it's nasty. He was bed bound for well over a week and recovery is slow. He'd been to Cheltenham Gold Cup. His also went and he got it too.
Bizzarely, despite my friend and her husband getting it, their two children didn't.
There doesn't seem to be any rhyme or reason to it.
How are doing now? Things settled down now you've got deliveries sorted?
Hi Wendy, it is bizarre about this virus. The reason given for the huge increase in Blaenau Gwent is that it is near the border to England 🤔🙄. My carer who I get nine hours a week is self isolating as she has asthma. Her next door neighbour has COPD. Her husband called the ambulance last week as she could not breathe. They said chest infection and left her. She got very ill within two days so her husband called them again. She was put on a general ward and told she had pneumonia. The following day she was worse and the test for Corona virus was positive so she was then moved to intensive care. How many people would have been subjected to the virus given that delay? Her husband and son became ill and called an ambulance and were told just isolate. Three days later her husband was rushed to intensive care. The son is struggling at home with his symptoms but because he is neither elderly or has a chronic health problem he is having to go out for food 😱. What an ineffective way to treat such a virus?? On a positive note I have just made my second loaf of bread which is lovely. I seem to have had one day in the past five weeks where my cold dried up but today it is back with a vengeance, sore blistered throat, streaming nose, headache and earache gggrr. Keep well and stay safe Wendy ❤️🌻🌺🌼🌈xx
I’ve read that about Gwent but it doesn’t look or sound right. I just checked the UK map again. I know Hereford area is fairly high too.
But if you look at the M4 corridor, Bristol & Bath don’t have anywhere near the cases. It just doesn’t look like it’s travelling east on M4 corridor. So not sure I believe that reasoning.
Anyway, we can only hope the lock down soon shows an improvement in the numbers. Everyone is hoping for that.
Oh my goodness, those poor people! Like you say, why didn’t they test her before????
I thought the opposite was true, that NHS and 999 were taking it that anyone ill with any of the symptoms had it. Until they proved they didn’t have it. To help control the outbreak. I’m shocked! Like you said, you would never want to endanger anyone else, especially not your family. But in that scenario, they weren’t helped as they should be.
Enjoy your bread.
I think I’ve had a very mini flare recently and am now staving off a UTI. Oh the joys.
At least the sun is out for Easter weekend. Although the days are rather merging all into one!
Yes it is very disturbing. My lovely carer brought Neil and I a Lindt Easter egg each in our shopping today. Silly but it made me cry. Such kindness, not essential but so welcome. The Local Authority sent me a six page letter where every paragraph started with you MUST do this and you MUST do that. It is bureaucracy gone mad honestly. They just cannot seem to understand that my situation does not fit their boxes. I am self isolating out of choice because I have received no letter but have common sense. My main carer is self isolating on her GP’s advice because she has asthma. My back up carer is visiting daily and has been invaluable because although we order an online shop, it cannot last two weeks . She has taken urine samples to the GP, collected my monthly repeat prescriptions because the chemist would not deliver, done shopping for us and even helped my hubby at a distance mend a section of our fence that had come loose. Now the LA say I am either in isolation and not receiving care or I am allowing care?? They want me to sign a furlough to pay my main carer 80% of her wages but will then not pay the substitute carer? It makes me so cross. At a time when they should be flexible they are being jobsworths. I hope your flare eases and that you and your family have a lovely Easter 🐰🥚xx
I had been trying to get a delivery slot with any supermarket for ages but no joy. Then I got a letter from the NHS to say that I needed to be in the shield catagory. This was initiated by my GP who was concerned about my various AI and Immunology issues. The next day I had an email from Sainsbury's who offered me a slot.
I would hope that this is UK wide.
Sorry to be blunt but what is it about NHS Wales? Such a beautiful place. Beautiful people. But the healthcare system sucks. It's the only thing that has stopped me moving there.
I hope assistance is given to anyone vulnerable in Wales asap. After all, we keep getting told that"we're all in this together."
I know. I am actually from Bristol, but moved here aged 16. Despite then going away to uni, I came straight back here. It's a beautiful place to live and life is a slower pace - which suits me now more than ever. Our children are extremely lucky to live here, beaches and countryside on the doorstep. We spend days and days on the beach in the holidays. Low crime too.
But the health care and these issues with WAG do make you consider if the pros are still outweighing the cons.
My children are now 16, 14 and 12 and are starting to talk about A levels and Uni and careers. I think with the options they are discussing it's unlikely that they'll end up back in Wales, but we'll see. They are having to do compulsory GCSEs in Welsh and I don't think that in computer programming or engineering, they will ever use that again. I wish they had more flexibility in choosing their subjects. Maybe by the time they have got their careers sorted, things will have turned around here by then. We can live on hope.
Ironically, when I attended a Fibromyalgia Patient Information Day recently, in Bath, I sat next to a lady from Cornwall, who asked me about health care in Wales, and she was shocked by what I told her. She said she was considering moving to Wales as she'd heard glowing reports.
This was then backed up by a Rheumatologist that did one of the talks! She had previously worked in the Aneurin Bevan Health Board and was raving to everyone about how the Welsh system for Fibro etc was perfect. All NHS and community working together, physio, occupational therapy, psychological support, support groups and community exercise groups etc for the best outcome for Fibro patients. I was gobsmacked.
After the talks, I approached her for a chat. I told her I didn't have Fibro, but I ran a lupus support group and many of my members had Fibro overlap. The lady who was supposed to join me was in a Fibro Flare and so I had come alone. I wanted to learn more and feedback. I told her that things were almost the opposite in Hywel Dda for Fibro and Lupus. We had a chat and she explained that Aneurin Bevan Health Board might be the pinnacle, as the Fibro system was set up by a Rheumy who worked at the Bath Centre of Excellence previously.
One of her parting comments to me was, well it should be easier with lupus, it's all on bloods......
Anyway, let's hope that this "We're all in this together" truly does happen eventually.
Thanks for your reply Wendy. Through my friend I know a bit about the Welsh education system and it seems to be fashioned to keep the younger generation in Wales for their further education, almost stopping them spreading their wings?
It's a beautiful place and I'd love to live there. But right now, this very weekend, I am learning that it is easier to get a vet to see a sick cow than it is for a doctor to see a very unwell young child and instead I'm having to help from the other side of the country.
I love Wales but the healthcare system needs looking at, especially out of hours care and speciality care such as Rheumatology.
Thank you for asking Wendy. Fortunately I was able to post two nights ago that she had turned a corner. She is doing alot better thanks. I was extremely worried about her on Saturday night and stayed up on facetime with her mum most of the night.
111 weren't interested and my friend has recently become a single mother so was stuck in rural Wales on her own with a poorly child.
It was a worrying time.
It really made me see what the Welsh healthcare system is like . It took 3 days to get her anti-biotics, yet Dash's grandparents are farmers and had a problem with lambing and they were able to get the vet within about 30mins!
No, it's not UK wide. It's the same in Scotland. No contact from the supermarkets and impossible to contact them. I've tried to contact both Sainsbury and Tesco so many many times that I lost the will to live!
Hi Wendy, I suspect it is only NHS England but I may be wrong. So that everyone can see the process I have just responded to someone on the Behcet's UK HU site. (in two bits!)
Dear Furst,
I know it is frustrating but as soon as your doctor submits your name, you will get a letter – not from the doctor but automatically generated by NHS Digital. If you are in any doubt you could check-back with the GP surgery and confirm that they have notified NHS Digital from their GP IT system. The updated list will be generated from Monday 6 April – which is why you have yet to receive a letter (and it may be a few days after that).
Once you receive the letter you must register with the Government’s website: gov.uk/coronavirus-extremel... This will enable you to access support with activities such as obtaining food packages or medications. Patients are being added to the central data base all the time and there will be a delay between you being added to that database and being recognized by the website/ support phone line as someone who is eligible for support.
After the first tranche of letters were sent out, an updated NHS shielded patient list is generated by NHS Digital every day, incorporating additional patient lists from hospitals and any additional cohorts of patients provided from external bodies, including acute trusts and GPs. It will also be produced weekly each Monday evening, incorporating updated feeds from GP systems (from 6 April). It is this process that ‘triggers’ the letters. They also advise that even if individuals do not need any support with daily tasks, they are advised to register with this website to let Government know
Hope this helps, explain what is going on.
Tony
I thought I'd check the link - typical, a go round in circles Government site. Trawl down the page to this bit - bold heading
How can you get assistance with foods and medicines if you are shielding?
where it says:
Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.
click on the link which takes you down to this message
Get coronavirus support as a clinically extremely vulnerable person
If you have a medical condition which makes you extremely vulnerable to coronavirus (COVID-19), register and tell us whether or not you need support.
You may have received a letter from the NHS telling you that you’re clinically extremely vulnerable, or been contacted by your GP or hospital clinician. If this has not happened, contact your GP or clinician after you register with this service.
It may take time for any support offered through this service to arrive. Wherever possible you should continue to rely on friends, family and wider support to help you meet your needs.
You can register yourself, or on behalf of someone else.
Start now
AND PRESS THE START BUTTON, COLOURED GREEN
What a performance. Obviously designed by an IT idiot frankly!
Yes and if we'll all stick together over all the inequalities and anomalies (and keep pressing) more widely across the Devolved Nations, we will get there one day! Lots (and I mean masses) of case studies/patient journeys/experiential evidence needs to be the norm. They can only ignore us for so long ...... and then we 'place our feet in their in-trays'!
I registered on the government's website but can't get on any list for supermarket deliveries, so partner has to risk his and all our health to get shopping every week. I'm so furious.
I am sorry to hear this. Is your husband vulnerable too?
My husband is still working. He works in an oil refinery and cannot work from home. So 5 days a week, he goes off to work and comes home to the 4 of us, who feel safe at home but with him still working makes me very very vulnerable.
He comes home and takes all of his clothes off and puts them in the machine for me and then washes before he comes near any of us. I am using a separate bathroom and trying hard to protect us as far as possible.
I would much rather he was home though. I feel that he is the only way me or the kids could become ill now.
Poor hubby says he feels like a leper in his own home.
So, basically, it might sound selfish, but he is out there working 5 days a week and putting himself at risk too. I don't want to be asking him to do food shops as well. It increases his risk of exposure and then our risk too.
He has been getting a few bits for us, now and again, but he feels uneasy in the shops here.
I would be so much happier if all 5 of us could stay at home. I am petrified of one us getting it.
The stories of children being taken to hospital alone, dying alone and being buried without family there, is haunting me. A parent's very worst nightmare. But it's happening.
That sounds so difficult. My partner is a psychotherapist and until three weeks ago was still seeing clients. It totally freaked me out too (in the end, I think we've all had the virus though of course can't be sure).
The UK strategy is so messed up. It's all very well condemning miscreants who are outdoors too long, but the government is just letting people fly back with no checks, insufficient quarantine and isn't providing protective gear or protection for all at risk groups. No-one can get deliveries. No wonder we're scared.
Why isn't anyone advocating for us? Why are we suddenly low or moderate risk? So frustrating....
Yes, I'm not happy about the downgrading of many of us.
We have lupus, so we thereby have a systemic illness caused by a defective immune system. We should all be high risk.
Though to be honest, I am still confused by the difference between vulnerable and self isolating those who Shield. We all seem to get a letter and I am hoping that we all get on these supermarket priority lists - so what's the real difference?
I am in the shielding group, although because of my conditions I tend to shield in lock down all winter because of mobility issues and thought a couple of weeks ago great nearly spring can get out and about soon, and then this happened I've been stuck in since the start of October now I'm in total lock down my husband works he delivers food to hospitals and factories with no PPE I'm absolutely terrified there's only him that I am likely to contract from. He has begged his bosses to furlough him, but they are having none of it. There really should be a rule that if someone has been listed as clinically extremely vulnerable (one of the 1.5 million shielding group) then the whole household should shield otherwise shielding is pointless.
I am worried about my husband bringing it home - but they are checking everyone's temperatures before you're allowed into work and social distancing is being taken very seriously. They have cleaners working all day - cleaning light switches and door handles and toilets. So although he's working and it worries me, we can't do any more.
But you and your poor husband are in a very different situation.
Are you making him put his own work clothes in the washing machine as soon as he gets in - only him touching the door handle etc and then him showering straight away too? I have seen many tips for limiting risk. Leaving work bag in a box by the door - so it doesn't get carried into the house etc. Wiping his phone down.
I totally agree that if you have someone to Shield in your house, you should all be home.
I know that Sainsburys England were given the details from the government of people on their list. There was also a link to the government site but it only dealt with the medically vulnerable.
Thanks. It appears that the situation in Wales is now moving forward and I have my letter, so I am hoping to get an email from supermarkets re priority delivery soon. But not all of my group have had their letters yet. Best wishes.
I saw a post on Facebook yesterday from someone who I don’t know personally (so it could be a scam, but I don’t think so - it was a friend of a friend). Apparently this only works for people who have had a letter (and I still haven’t - don’t get me started on how I feel about this).
The post claimed that you can register on the NHS England site and say you live in England even if you live in Wales. If you can fill in all the other details they ask you for (apparently there is an identifier number on the shielding letter?) but just say you are in Wales (while giving your correct address, obvs) - the site allows you to register. I would be interested to see if this works for someone with the all important letter....?
My lady who tried yesterday to register had her letter, but still couldn’t register.
But out of my support group members of over 50, only about 10/12 have their letters.
I still haven’t had mine and to be honest I don’t think I’ll get one, I think I’ll slip through the gap.
I got a referral to see another Rheumy, a supposed lupus expert, out of my area and I saw her in February. So I don’t reckon Hywel Dda will do mine and neither will she. I still haven’t had the copy letter following my appointment- she promised to send a copy to my GP, my London lupus expert and me.
Anyway, would be nice if people in Wales could register for this service.
It would be more than than ‘nice’. I live on my own and am feeling very abandoned in all this. I was told verbally to isolate by my GP. The kidney specialist phoned and told me to stay at home for 12 weeks. But no letter and like you I don’t think I will get one. Being completely dependent on the kindness of others for everything I need is very jarring. I have carefully built myself a life in which I can be self-sufficient and ‘pass’ as ‘normal’ most of the time. I hate being seen as, or treated as, vulnerable or disabled - and this (the CV19) crisis, is the most disabled I have felt in the many years since the lupus diagnosis. More than the social isolation, it is the loss of control over my day-to-day life that is driving me crazy, along with the knowledge that, if I catch this thing, I’m among those they might not bother trying to save (although I’m sure that would depend on the competition!!). So a piece of paper that would let me get supermarket deliveries as a priority would be a massive boon right now.
I would think with kidney disease from your lupus you are on the « extremely vulnerable » list. Have you seen the risk summary by the NHS rheumatologists? I could understand why you would be very anxious about this.
It is hard to rely on others, particularly when you feel deprived of the official letter. But I really think the letter is just late in coming. I think you should protect yourself in every way.
Have you tried reaching out to a mutual aid group? There are 1200 mutual aid groups in the UK. You really should not be going out, right?
I know it is hard to be vulnerable. But you are. Please protect yourself before you get the letter.
Thank you for this. I know I am very high risk, and am being very careful. I'm lucky to have good friends around me and to live in a rural area (this must be SO hard for people who have no outside space - I really feel for them). It is my independence - which I have really nurtured and cherished since having lupus - that is hurting. Even to take a beautiful cold swim in the sea right now is difficult - but to be able to walk into a shop and choose my own food would be sublime!
It does seem that people with lung conditions are being prioritised for a letter, though and while this is right, as COVID attacks the lungs, it is terrifying for immuno-compromised people whose other vital organs are malfunctioning and might not survive the onslaught.
I really doubt it is that those with lung issues are being prioritized. I only say this because if it is the consultants who are deciding on the risk levels and sending out the letter, they seem to be on the same late schedule. Not making it easier on people, I know.
I can tell going for a swim and not having your independence is important to you. But you have to be extra careful now.
We don’t have a letter in the US that differentiates risk level. But you are mentioned on every list of very vulnerable people, I can assure you!
There is a lot they don’t know about Covid - it is also affecting young healthy people - but they are sure it is not good for people with serious underlying health issues.
I have been in quarantine for two and a half weeks. I live next to First Avenue in New York City and hear the ambulance sirens all day. I don’t want you or anybody else in a high risk to be in one just because a letter arrives late.
Wow Kay, I did not realize you are absolutely in the heart of the city. I hope you are doing better.
Our governor just announced yesterday that all people must wear a mask when outside their homes. Which would basically be shopping for groceries, as just about everything is shut down, and walking out in the fresh air, with appropriate social distancing.
Yes, so much confusion about the masks. It seems they mainly help prevent the wearer to transit the virus if they are asymptomatic. They need to be washed daily.
I am doing better and probably not contagious but have not been out. Hope light-headedness goes away and will go for a walk tomorrow.
I’m so glad and I hope the lightedness goes away for you ASAP!
Doing well, thanks. I’d say ‘bored’ but the last few years I’ve gone through this ‘isolation’ so much simply because I haven’t felt well and couldn’t pull myself off the couch. But, yeah, I guess I’d still feel a bit bored.
We were suppose to go to New Orleans for 8-9 days a couple of weeks ago. That was cancelled. We were suppose to be heading for a week in Utah this week for my grand son Oakley’s baptism next Saturday. But we won’t be going now. I have 4 grandchildren, 2 married sons and a single daughter there that I was looking forward to seeing, but I also have 2 married sons with grandkids here that I can’t see because of this, so 🤷🏻♀️...
We also have a two week vacation in Italy the beginning of July and am wondering if that too will be canceled. 🤦🏻♀️But, this is life, isn’t it? Just gotta roll with it.
AND it’s been too long since we’ve been to NYC!!! Maybe someday we’ll walk passed each other, stop and turn and think to ourselves ‘hmm, do I know that person?’ 😆
😊 we’ve all had a long period of ease. Hopefully this will knock some of us awake to things which are important.
As far as our trips, if not this year we’ll have other opportunities. The important thing is that the world heal, that my family and friends (like you) survive this. And hopefully it passes quickly enough that the economy will get back to normal without much notice. Houses aren’t lost, people will only feel a brief tightening of their belts at most.
I just feel badly not being there for Oakley. I’m sure he’ll understand. He’s a bright and compassionate 8 year old. But, we like to always be there for our kids and grandkids big moments.
I have now had my letter, although many of my group still haven't.
I contacted our senior Rheumy Nurse and asked for advice.
She told me GPs in Wales can add vulnerable / shielding patients to the list via their GP Portal.
However my groups experience hasn't been that good. GP receptionists fobbing people off and telling them that it's not their jobs to do it. Or GPs themselves saying that they can't do it.
My advice is to contact your consultant / rheumy nurse AND your GP and say you should be on the list and can they help you.
It's a real pain having to chase it up, but it will help get delivery slots when this is sorted.
Wales have now released data to 3 out of 8 supermarkets and the rest will follow.
As far as I understand it, the centralised list for letters is held by NHS England only, for patients registered in English GP surgeries (primary care).
In Wales, vulnerability letters are in the process of being sent out. Our list is being complied from the codes used on secondary care records, with GPs being invited to add people who've been missed out based on their own understanding. However, the letters I've seen are rather contradictory - the public letter seems to suggest that GPs will automatically add people, but the notice to GPs seems to imply that they need only do this in response to patient enquiry, rather than do an automatic trawl through their own database to find them.
How this relates to databases held by supermarkets is a mystery to me. But I gather from news reports that it's DEFRA that is the department responsible for conveying "highly vulnerable people" lists over to supermarkets Personally, I am appalled that the government has apparently handed over lists of 1.5million highly vulnerable people to these private companies without their permission x
ScotGov says: 'The usual need for explicit consent has been suspended in the context of the COVID-19 pandemic. This will allow automatic sharing of useful data from the primary care record (specifically past medical history). '
Interesting document...the last couple of pages show how GPs add notes like 'complex problems', 'functional issues', TATT and 'nutter' to share within the practice AND secondary care without them appearing on medical records when requested!
I didn't get a letter but I have multiple AI conditions and am under investigation for an immune deficiency and might need IVIG. I was having the assessment testing as CV19 hit. I also have no IL6 which is what the CV19 causes to go into a cytokine a storm.
Basically, lupus plus overlaps and a really bizarre and unexplained immune deficiency. I spoke with my awesome GP and he said that there was no one thing on the government list that he could tick, other than long term steroid use. But he said because big all the other small risks rolled into one, I was a CV19 nightmare if I caught it. So after a discussion together bqr decided that I should be shielded and he put me on the list. So GPs can add people at their discretion.
I am in England. Have had the letter. Have registered on the web site. But have not got any call from Sainsbury's or any other group. And cannot seem to get on the priority online list.
I’ve had the letter, 2 in fact, but no sign of any priority delivery slots. Trying to reduce the amount of times my husband goes out so we have deliveries from farm shops and butchers (not great for a veggie like me!) but there are things that we still need from supermarkets. Frustrating. My very healthy and lean 13 year old son announced that he has lost 4kgs since finishing school 2 weeks ago 🤣.
I've not had the letter however I rang my rheumatology consultant and after a lengthy discussion decided to stay indoors for 12 weeks.
I did register as vulnerable person as my consultant thought I had slipped through the net. A week later I received an email from Asda with a priority delivery pass.
The stress of not knowing if I was on the extremely vulnerable list to now receiving a priority delivery pass shows that there will be a great deal of us that have been missed by NHS digital( apparently they send the letters out).
Even with the priority delivery I could only book a slot two weeks from now. It's a good job I was prepping for Brexit over the last 18 months and had some basics stashed in the the Brexit cupboards!!
So glad you will be able to get help with priority delivery slots. That help is much needed. I fear people are still stock piling food and being selfish. If only everyone just bought what they needed. x
I'm in Scotland and my husband is on the very high risk list (bad COPD), having received a Scottish Government letter; which also had a bit about priority supermarket delivery slots. But we are now sat wondering when we might hear something more about this up here.
Now I know about the system, I will keep an eye on these links.
Sainsbury's have actually mentioned Wales and Scotland. I find the link again.
Unfortunately in my area, my home delivery options are limited to Tesco or Asda and both are snowed under.
I think again, people in the city with more supermarkets offering delivery may fair better?
Anyway, from what I have picked up so far, there is a Tesco page where you can sign up for priority slots - you need to enter some details address etc and give your unique number that proves you are priority - the number being on one of these letters confirming you are vulnerable.
In scotland it is now sorted. They have sent out letters last week and on the letter is a number to text. You text them your CHI number and you are added to the list for priority delivery with whichever supermarket you are registered online with. We already had an online account with sainsburys so as soon as I text the government number, I got a text from sainsburys to say I was on the priority slots list. Two days later we could access the slots.
They are also offering food parcels if you are stuck (through the same number).
It's a similar system to the online one for English residents, just the scottish equivalent.
Yeah absolutely. Scotland was very behind in setting up anything or releasing information, but it has finally started to catch up. The food parcels started on friday x
Yes, my husband texted his details but we have heard nothing from either Asda or Tesco, with whom we are registered. I wonder if Sainsbury's has got its act together before either of those two?
#lupie, did you get the automated response to say it had been recieved? If not,I would try again.
MrsMouseSJ, that's a shame. An acquaintance got one from Tesco so I thought they were all working on the same system. Hopefully they will catch up soon, but otherwise the food deliveries are available (even temporarily) if you're stuck x
Yeah, literally within seconds so I think its automated. Maybe double check the number? Otherwise the councils have localised numbers you can call for assistance. They should be able to get you added to the list x
I live in NE England and have been unable to get any help with groceries - other than from our daughter (5* to her!). I have the NHS shielding letter and I've registered online as vulnerable. Hubby is a bit over 70 and fit as a fiddle, but doesn't want to go out to supermarkets in case he brings Corona home.
I think part of the problem, at least in England, is that I've never done online grocery shopping and now I'm unable to register as a newbie, even though I'm 'vulnerable'. The system may catch up - eventually - but I'd be very worried without my daughters help.
Hi Wendy. I didn't get a letter from government but I filled out a form on the government website informing them that I'm vulnerable so I received a email from sainsbury's giving me a priority slot.
Hi I had two letters and two emails one from Asda and one from Morrison both telling me I can register for on line deliveries as a vulnerable person. Not sure how both of them got details but have registered with Asda for fortnightly delivery. I do however live in England. Hope everyone is well and staying safe
I no nothing wish I did if it wasn’t for my husband n I wish he didn’t have to leave the house we wdnt have shopping can’t get a delivery slot anywhere n M&S has closed there’s
I didn’t receive a letter from NHS to say anything about being classed as vulnerable. However, my rheumatologist urged me to self-isolate for at least 12 weeks.
As I didn’t receive any letters, I registered with the government as vulnerable. In this, I stated I didn’t need help with food (because I don’t need a government food box and would really hate to think I was taking this off someone who really did need it). Since, I’ve received nothing else from the government, but 2 supermarkets have sent me emails stating that the government have categorised me as extremely vulnerable, and so I’ve been given priority shopping slots🤷🏼♀️. One of these was ASDA, whom I’ve never shopped with before, but was really impressed that they allowed me to book recurring slots (so I could choose to do slots each week, fortnight, month etc) so I now have guaranteed fortnightly deliveries with them until October.
On another note, I spoke to my GP Tuesday last week to enquire about the government lists (amongst other things) and his reply was that it had nothing to do with him, and that GPs don’t control the lists, even when I read out the guidelines about GPs providing this information from the Government website - he ended it by concluding that I know I’m vulnerable, and he knows I’m vulnerable so that’s the end of it. 🙄 Though, this is the same GP who told me last year, despite my ever-growing list of medical conditions, that I am 22 and I should be having fun, what was I doing wasting my time at the GP surgery (like I have a choice 🙃).
Anyway, the next day the surgery rung me to state that he’d researched this after the telephone consultation, I was right, and he had now placed me as vulnerable on the GP system, for the government to pick it up on their system, and that there is a letter waiting for me to pick up (which I’ll do when I have my B12 injection this morning). God knows what this letter represents but hopefully it might be helpful.
Sorry it’s a long reply but thought it might help people who’ve struggled to get the necessary support during these unprecedented times. If you’re able to (not sure if it’s only applicable to England or the whole of the UK, but it does seem that signing up on the government website has started the ball rolling for delivery slots from my perspective).
Also, I’m so sorry to see the disparity yet again with the health service in Wales, I always feel it’s terribly unfair and unjust that you constantly have to fight for sufficient care. Hope you’re keeping as well as you can and stay safe x
I have just spoken to someone at Tesco Customer Care and explained that I am in Wales, vulnerable and self isolating for 12 weeks. I asked if there is any way that they can give me a priority booking slot. The system in England means that the vulnerable have already been approached by supermarkets and prioritised. I have been told that Tesco are waiting for a list from the Welsh Assembly Government and as soon as they get that list they will be emailing their registered customers regarding priority delivery slots. There is nothing Tesco can do, until they get that list. They're hoping it will be with them by the end of the week. I've been told to keep checking my inbox for the email.
Finally my advice would be, get registered with Tesco, Asda, Morrison's as many supermarkets as possible in your area. Just open accounts. Then when this Welsh Assembly Government list is ready, you should get onto one of the priority lists with a supermarket.
And you must chase your letter! If you don't have a letter, you wont be on the list.
Also, if anyone here is in Wales and hasn't had their Chief Medical Officer letter, let me know. I've now had mine. It contains telephone numbers and website addresses for all of the County Councils. They are arranging their own volunteers and delivering food parcels. You have to telephone them to register. From my understanding of the scheme, they deliver weekly boxes of dried goods. No fruit or veg and no toiletries. But it's something.
It seems the same here. Out of 50-60 members, I’ve had feedback that only 15 have received letters. When I contacted Rheumy Nurse she says they’d done theirs and it was up to the GPs now. GPs are saying it’s nothing to do with them in many cases. I have contacted my AM and she said GPs got reminders on how to do this last week, via GP portal system. But they are being rude at times. My lady who needs a kidney transplant, have lupus and APS and takes many meds, and was admitted a couple of months ago very very ill with septicaemia - the receptionist said to her in an aggressive, rude tone, “What makes you think you’re vulnerable?!?” That’s just one example.
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