GOV.UK coronavirus support: You registered as a clinically extremely vulnerable person. If you have not received a letter from the NHS or been in contact with your GP or hospital clinician, you should contact them to confirm whether you are considered clinically extremely vulnerable. If you meet the clinical criteria, your GP or clinician will be able to request that you be included.
If you need urgent support such as food or care, please contact your local council.
This is the second e mail I've received from gov. UK. The first was last week a couple of days after i registered. I've even spoken to nhs england and they told me it was the GP who needed to add me on. The surgery still say they don't have the facility to add patients on but i told her she needed to contact the regional team. Feel like I've just been fobbed off yet again.
I first registered almost 2 weeks ago and 3 more times after that with the latest being day before yesterday and the reply I just posted was one of 3 all sent together and all identical!!!!!!
Hi. Yes me too. Rang the surgery again to see where they are with it and she told me they would get back to me. They're now closed and no call back. Talk about support for the vulnerable. Absolute joke.!! It's now a bank holiday and no one to get in touch with. Will call consultant secretary again on Tuesday to see if they can help. Its more annoying that i can see the template on the NHS site and all they have to do is download it and add me on to it. Another stressful weekend.
My husband too just had exactly same text. Phoned doctors apparently they are getting a list from the government on Friday of those who have self registered to go through and forward any paitents that have been missed off. So nothing will be sorted till next week for us.
That's good to hear. Hope all surgeries are the same. I understand they are getting updates all the time. Just a Shame they aren't giving the patients any advice other than saying they either don't have any thing to do with the letters when we all know they do or they don't call you back when they say they will. I'm sure some of them think we as patients don't know what we are talking about.
I'm also waiting for a letter having self registered a week or so ago. I have given up hope of getting an on line delivery from supermarkets and today put in an order with Wiltshire Farm Foods and they are delivering on Tuesday. That's what I call good service.
It’s crazy, I have had no letter, GP said they didn’t add to the lists so I self registered. Still no letter, but had an email from both ASDA and Sainsbury’s that I could have priority deliveries as vulnerable. Couldn’t register with Sainsbury’s, so phoned to be told that I wasn’t on their vulnerable person list, even though they had sent an email saying I was! Also MPN wasn’t on their list of conditions on the computer. Luckily she was lovely and added me to the Sainsbury’s list under general cancer, so at least I can get some shopping.
Yup I have had same govt text - despite having a NHS letter dated 27 March, GP surgery confirming I am on the list and registering on Govt website two weeks ago. Adds too much anxiety to an already vile situation - all i want is an online delivery! Just as well I have good friends looking after me the past three weeks home alone! All the best everyond
Yes I got the same text message today. No letter despite being told two weeks ago by hospital that because I’m on Ruxolitinib I was extremely vulnerable. I phoned my gp two weeks ago and was told doctors have nothing to do with letters. Phoned GP today and they took my name and details and said the nurse was looking into it. No phone call back yet.
It is frustrating when my husband is also vulnerable and I have 3 hungry young children to feed.
Just had a phone call from the nurse from GP surgery. She said that because my medication is given by the hospital and not the GP it doesn’t flag up on my records. She opened my latest letter from my consultant and it confirmed I take Ruxolitinib. She then spoke to a GP who confirmed I’m extremely vulnerable and she is sending out my letter today. Such a relief but now need some shopping 🛒
Hi, I have had the same tx from GOV UK today.. When I rung my surgery last week I was told it isn't them that send the letters out. I'll call again next week, maybe my consultant too
You could try Bloodlwise to see if they would contact your GP service? This is so frustrating that there is so many discrepancies between each GP practice. When I phoned my GP I quoted the NHS statement that was given to me by Bloodlwise saying because the NHS is unsure how this new virus will react to MPNs then it has been decided that all MPN Patients will be considered vulnerable. They are quite happy to email you that speech. maybe you could then ask to speak to the practice manager? All I can say is I wish you a good outcome x
Thanks but I've done that. Spoken to bloodwise and passed the link on to practice manager and also after speaking to nhs england suggesting she call the regional team. She said she will sort it but won't return my call now. I think we have all tried with the suggestions from this forum so thank you all for that. If i haven't anything by Tuesday I will call the hospital again who did say if i didn't get any joy to call them back and they will see what they can do.
I am in the exact same position! I think the letter really is if work need it to prove you are on a 12 week lockdown - having the text let me register for Sainsbury’s shop once a week and the option of help through the council should I need it which at the moment I don’t. The only time I now go out is for a 30 minute walk with my kids and not going into any shops at all and the walk is for all our mental health! We avoid people and unfortunately always seems to be us crossing the road to avoid or stepping out in the road!! My husband is a key worker so he has to go to work everyday so this is my only risk now of bringing the virus into our house - we only have a 3 bedroom house so he can’t sleep in a separate room so he just showers as soon as he gets home every day and wash his clothes straight away when gets in - spoke to consultant who said we are being sensible and doing all we can! The letters will come I think the health service has a massive backlog - I only got my letter from
Yes Becky, having children with us,we re still going for our walk on a fairly empty route, usually in the evening when people are in their houses. The children are young and need to get out of what is a tiny 2 bed with small yard to stretch legs and see sky, and so do my hubby and I. When, if, I get the letter, I hope it ll oblige his company to give him the technology he needs as a production manager to work from home so we can shield together. And it looks like, if schools do get reopened, without me in the building, as I'm a teacher, they wouldn't expect children of vulnerable adults to return,at least not in the earliest stages. With families, and in the absence of grand mansions, we can only do the best we can,especially as this is long haul and needs to be sustainable. All the best X
All the best to you guys too! It’s so hard! But we all will get through this! I think once there is a treatment we hopefully can re emerge into society!!! Take care and keep in touch! Becky x
I feel the same I rang my gp they said I would receive a letter as we dont do emails. I'm a key worker to so my company will not let me finish unless I have a letter. No one is allowed off unless they have symptom and we have to skype to show them. I've talked to so many people I'm getting different feedback now so stressful. I have no energy at the moment too really struggling normally my company is really good but all new management and if I'm honest they are SHIT!!
Really upsetting feels like we just get pushed to the side.
Me too. I received the same text after filling in the Govt. online registration form. I rang the doctors surgery and they said they don’t have the facility to add me. They suggested I rang my constant’s secretary who said they don’t have the facility to add me either. Seems we’re all caught between a rock and a hard place.
Where do we go from here?
I have found that unless you were already a regular online shopper and had registered as vulnerable, which I hadn’t, then it’s impossible to get an online deliver slot. My husband is over 70 and I have ET and so we are faced with no choice but to go out to get essentials as we don’t have family nearby who could help.
If the Govt want vulnerable people to stay at home and save lives they need to try and make sure that’s achievable by sending us proof of our vulnerability! It is very frustrating.
Go to my last post yesterday which is the reply I received from NHS England and copy the link. That link is copies of all the directive letters the g.p.s have received. All there in black and white. Good luck.
Having read the comments on this forum , I emailed my GP on Tuesday afternoon and included the link to the MPN voice information about our conditons. I have ET and taking Hydroxcarbamide daily. She replied at 8,30 next morning saying she agreed and would send me a letter in the post which I expect will take a few days to arrive due to the holiday.
She said that I should then be added to the database of patients from their system. I think this implied that they could add to the Government/ NHS database. I then reregistered on the government database for the 3rd time, but this time said I had had a letter. Lo and behold yesterday Thursday I received the wellknown text. Sounds like a really mass emailing to MPNs !!!
My MP has been communicating nearly daily to constituents re C19. On Tuesday he said if we had not receivedwere our expected letters and having problems with online slots with supermarkets locally to let him know. I shall be doing so if I dont get any calls from my local supermarket.
However, I realise that there will not be capacity for online shopping for all the extremely vulnerable so I may continue to rely on the marvellous friends who have been shopping for me for the last 2 weeks. This has been a really stressful experience and I would urge you all to find some local support organisation to help with shopping. Getting that sorted is very important. Help is out there. I have found that friends are delighted to help. It gives them a reason to be out! Use the NHS volunteers too. My sister has been operational for a week but has had no requests for help. !
What a waste of everybody's time! Including the person who sent that meaningless stream of twaddle.
I still haven't received anything except from two supermarkets identifying me as vulnerable, but still it doesn't help anyone actually get a shopping slot, even though I did manage to get one on Wednesday. Bearing in mind how long that took me, I have been trying to book the next one. It's like going back to work, sitting so long at the laptop. They might as well have told us at the outset that we were going to have to "make some friends". It would have caused less stress and frustration in the end.
I got exactly the same message in a text yesterday after registering on the Gov.uk site the day before. I'm not going to contact GP or Haematology . Too much hassle and managing with deliveries at moment.
Contacted the lovely Claire but not sure she's working but I do have a telephone consult in 2 weeks. Very interesting reply from NHS England which also included copies of ALL correspondents the G.Pc's have received.
See my latest post and follow the link in the reply to me that I shared. It does say G.Ps can recommend.
that's what we've been doing, on line game with lots of participants. Kept us busy if nothing else😊. There will be trouble if I get down to one bottle of gin. Do you think I can get that on prescription😆😆😆😆😆🍸🍸🍸🍸🍸🍸. Stay safe.
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