Hello my MPN friends - I hope you are all keeping well.
By now, you will probably all have seen the advice posted by MPN Voice re COVID-19. Being just over 70 with ET, slight hypertension and on Hydroxycarbamide (5500mg pw) I appear to tick enough boxes to fall into the extremely vulnerable group, although I feel anything but! Like so many others, I have not received a letter from my GP and am therefore encouraged to contact him to obtain guidance / get classified.
Given that I have read the guidance for the extremely vulnerable and can therefore act on it as required, and I need no external support to live in lockdown, is there any advantage in being added to "the list"? Does it give priority access to services etc? Does it help NHS staff identify me as extremely vulnerable if I do contract the virus? So many questions without answers!
Any ideas would be very welcome
Stay safe
John
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So far as I can tell, the most likely benefit of being registered as extremely vulnerable is free food parcels delivered to your door.
Quite frankly, I'll be damned if I want to be considered extremely vulnerable just so that I can get freebies when they are far more appropriately allocated elsewhere - that would be as bad or worse than stockpiling bog rolls!
If anybody does genuinely feel vulnerable (and I am sure that there are vulnerable folk amongst us) then register, but if not just stay safe, and follow the rules.
I'm glad you aren't vulnerable and don't have the need for 'freebies'. However, I can't go out, can't get a slot and have no fruit and vegetables left. It isn't a question of who deserves it more; it is a question of need. I shouldn't be made to feel guilty for being seriously ill
My point was not that I am not vulnerable, I just don't feel vulnerable and I very firmly believe that any benefits should go to those who are suffering most.
I'm sorry if I have upset anyone and genuinely sympathise with all who are horribly locked down by this appalling situation.
No place to register in Scotland only England.As my hubbie works away from home I could benefit from drug and food delivery but have just given up and eat strange mixtures from cupboard.
One benefit is that one should be able to get a delivery slot from one of the major supermarkets. I have tried, Sainsbury, Tesco and Morrison’s today and none of them have any slots for the next 3 weeks unless you are identified as being vulnerable.
I have no wish to mix with others in a supermarket, even at a 2 metre distance. To that end I have placed an order with a local farm shop. Everything is overpriced and delivery charge expensive but needs must. Not sure I want to pay their prices for the next 12 weeks though.
I don’t want anything for free, just to be able to do my normal shop.
Totally agree, I have received letter but have no intention of taking a delivery slot when i've got friends and family to rely on in difficult times. Someone more vunerable could benefit from that slot that I could take when its no bother for people close to me.Atb,tina.🤗
I think the purpose of it is to help people self identify raise awareness and shield themselves. I believe in most cases people need to make practical arrangements for themselves - the food parcels are limited and should really be for those with no or limited support
The idea is also to limit the strain on the NHS and save lives
Hi John, I encourage you to follow the guidelines if you receive a letter. Those considered most vulnerable are more likely to catch the virus which will strain the system. If we can avoid that, everyone will be better off. What many here don’t understand is that they don’t just harm themselves if they catch it. They harm any friends & family they’ve given it to before they knew they had it as well as the medical staff caring for them. And then of course is the insufficient amount of supplies etc. if too many of us get it too close in time. Things may not be in as much of a mess in the UK as they are here in the USA but I still think caution is warranted. Katie
I am of course following guidelines and have been housebound for 10 days, but the point I was making is that registering as 'extremely vulnerable' doesn't appear to achieve anything once you are aware of what is required.
Personally, the only reason this would be helpful to me (and why I have signed up) is to get access to online shopping. I have no family to help plus I have to shop for my Mum too.
I feel like I’m dodging bullets sometimes in the shop with some who have not complied too well with social distancing.
Hi, this is the only reason I have signed up. Was most disappointed that when I went to the vulnerable slot for shopping last Friday - now know shouldn't have even done that - that people were dithering around and most forgot about the distancing so felt I won't do that again and I hope by registering that easier slots with supermarkets will come of it. Sickening seeing people locally, all fit and healthy, still getting their slots. Have to see.
Hi jenny. Regarding the 'fit and healthy' statement still receiving their delivery slots we must remember that their is a lot of invisible disabilities that we can't see and also families with disabled children. I genuinely hope everyone who are in need of deliveries manage to get at least the basic essentials during this time of crisis but their will be fit and healthy people out there taking advantage. I hope you manage to get a delivery slot. Warm wishes.tina.x🤗
Thats the problem Mary. The 'Covidiots', aptly named may I say who just don't get it regarding how serious it is when they just seem to disreguard everything they been told about the 2 metre distance rule but then on the flip side we have overzealous police and local council officials telling convenience stores what they cannot sell because its not a 'neccessity', try telling that to young children when it comes to easter that their easter is cancelled and they can't have a chocolate egg, its bad enough they are cooped up all day and are just to young to understand. You've got valid circumstances mary for signing up as extremely vunerable and needed to sign up. I think a lot of people should really start using common sense now. I hope you and hubby are taking care of yourselves and of course your mum. Stay safe and away from the 'covidiots'. Just love that word they invented!🤣 tina.xx.🤗
I’ve just dumped my virtual basket after spending over an hour on the Tesco online shopping site, only to find no slots for the whole of April. My face is bright red and I’ve got a headache from it.😡
Anyway, we’re ok for now, just trying to be sensible. It would be so much easier to get through all this if we could get the shopping delivered....
How are you keeping? I didn’t know anything about the restrictions on chocolate eggs, poor kids and some adults too. I’m very partial to a chocolate egg🤗.
Yes some overzealous police and council officials being a bit stupid and taking it a step too far but all is not lost a statement was issued earlier about them using their 'common sense' during this time so I think the kiddies and some of us adults who are partial to the odd easter egg or two are fine👍tina.xx🤗
Apart from the extremely important shielding advice the letter gives it is also required by employers, for those of us that work, for proof so that employees continue to be paid whilst shielding. There are also lots of older people that aren't online, if they are alone and don't have anyone to help them there are support details on the letter.
I am registered and I would use a slot if needed. We have no family so it’s just my husband and I and without him I would be lost. Luckily we live right opposite a Tesco express and my hubby goes over at 7 a.m. if we need the essentials, in fact he has just been over for some milk. He said there was no bread, not a vegetable in sight and no cheese, this at 7 in the morning when they open.
Luckily we saw the crisis coming at the beginning so we bought a few canned essentials and batch cooked food which we froze. At the moment we are fine but this lockdown could now go on for 6 months so, yes, I will be using a supermarket slot if available.
My hubby is terrified of bringing the virus 🦠 home to me and I couldn’t manage without him.
Nobody should be shamed if they need to use the resources available.
I too registered with the government but do not want a freebie. I do want a slot at Sainsbury's and with none available, will have to drive there today. My partner is Type 1 diabetic so he's at risk and is blind, so it's all down to me. I am going to go to Customer Services to ask them to stop saying they haven't identified me as being at risk (I am 75). Then maybe, this will be my last shop in person. If they don't give me a slot, I will go back to Lidl next time as last week it was not crowded and had what I needed.
There is no logic lately. I hope you get what you need. My hubby went to the local Tesco express at 7 this morning for milk. There was no bread, vegetables, tinned goods were almost gone and no cheese. This was as soon as they opened their doors so goodness knows where it all was.
I don't want the freebie, I just want to have a slot so I can just get some essentials
There is logic to that, Jilly. I went to the next village last week and at 10 am the shop's shelves were empty but there was a tanker outside and they were just filling up the shelves. I think that the stockpiling has made it difficult to get deliveries to all the shops at the time we would expect, so no doubt your husband got there too early!
He probably did but when we look out of our kitchen window and see people queuing outside the doors, huddled up to each other, my hubby feels safer going early and getting what he can off the list. I wish the stores would be allowed to close for a couple of days to allow the shelves to stock up and then limit people to what they can take.
I have PV Jak2+, daily asprin and Hydroxyreau under review between 4000/5000 mg a week. I'm still confused, aware we're higher risk but not sure if vuntable, no letter received. From what I heard on TV this category may have some exercise but avoid shopping. Really not sure about this and only go out If I really need to.
I don't and wouldn't want to receive freebies, These should be reserved for the very vulnerable. I do feel anxious about food shopping and no one to help apart from the occasional small bits. Sooner or later I will need to attend a supermarket if no online slots available.
I had the letter & the instructions on it can be found in the GOV. UK guidance document on shielding. Full instructions near the bottom of the document. Sorry I'm writing from my phone & dont know how to add a link
Being recorded as extremely vulnerable allows employers to recoup some of the wage they pay anyone in this category, allows you priority for online delivery orders, and importantly, allows the NHS/government in their planning to cope in this unprecedented situation we are in.
I am employed by a small charity, am classed as a key worker, and work with people who are high risk offenders with often very chaotic/dangerous life styles. My 'risk' is thus higher of catching it, my employer does not want to risk this, but needs to be able to have some of my wage covered if the charity is to continue it's work.
Also, the knowledge gleaned so far from this outbreak is new, less than 4 months since it appeared, clarity as to who is at more risk is changing all the time, but I don't think it is harmful to be cautious, especially as that is clearly what the NHS and government want everyone to be. They just don't really know yet, but are trying to avoid straining the system by asking those that they do know or believe to have a higher risk to islolate. It is unlikely that there will be any definitive statistics available as to the actual risk to MPNers for a long time, as it is rare, so will take longer for there to be any reliable evidence collated.
It was less that 3 weeks ago that they were saying this virus will die down once the flu season is over, now they know it doesn't care what season it is, as the flu season is over, yet it is carrying on spreading.
You can register without taking 'freebies'. Most people do not want to burden the system, and would prefer to do their own shopping, and only those that really need it will be asking for the kind of support that can be provided if you are on the register. There is also an army of volunteers now helping the NHS, so anyone on here that does need support shouldn't feel like they are taking advantage in some way. I think that there cannot be many people trying their best to get registered as extremely vulnerable to get the 'freebie' of having some shopping of items they haven't chosen delivered. Then again, I could be wrong...
Hi Minus68. Oh believe me their are people out there who take advantage of a 'freebie' . My local chippy advertized on facebook they would feed anyone termed as vunerable. I heard they were extremely busy. The joke part about it is they were showing their Esa or Pip award letters to say they were 'sick'. That being the case these people should be self-isolating for 12 weeks and not outside in the first place . In this area were I live it is classed as one of the most deprived in the country but still that is no excuse to lose your morals. Bet these same people can still afford alcohol and drugs while depriving the genuine out there. Atb, tina.🤗
That is sad to hear. I do accept that there are people that take advantage, but think they are in the minority. That minority are more likely to live in highly deprived areas though, so you may see more of it. I also live in such an area, but haven't noticed anything like you have with your chippy Keep safe
Good questions ,would like to know the answers too. I know we have to self isolate, my partner being just about to celebrate( well can’t do that just yet unfortunately ) his 90th birthday 🎉🎂. I am 70 + with ET Hydroxy etc
So we know, without being told we have to self isolate. But I need that letter to get a Sainsbury’s delivery!!
Reading the experience of others on our lovely forum, not responsibility of GP....not responsibility of haematology ... nothing appears to be ‘joined up’
Hope you are feeling a lot better today sandy after reading about how ill your were. It must have been very worrying having those symptoms at this time in particular. You keep safe and I hope you manage to get a delivery slot soon. Atb, tina.x🤗
Hi Sandy, sorry I missed the post saying you were unwell but glad you’re feeling better. E hugs and best wishes sent with this message. Kindest regards Aime xx😻😻🌷🌻🌷🌻🌺🌸💐
I too am a tad confused about whether or not I'm classified as vulnerable. I have ET, soon to be commenced on chemo tabs. I also have neurofibromatosis (tumours on my nervous system). I am 49, can't work, have a paralysed right arm, scoliosis, and recently had major facial surgery after which (thanks, aspirin) I haemorrhaged!
I can't go out to shop, and can't get a slot for shopping for three weeks. I haven't had notification that I AM classed as vulnerable, and I'm very concerned. John, these are worrying times indeed. I haven't time to worry about getting C-19 as I'm too worried about getting food! Safe safe, my friend x
I have been thinking about the purpose of the most vulnerable list. I don’t think that it is for the benefit of the old and sick.
The stated aim is to help the NHS manage in the Covid-19 crisis.
The quarantine and support of the frail and immunocompromised is to keep them from catching the virus, and taking up hospital space.
Those who get sick with suspected Covid-19 are Triaged on admission to A&E.
The NICE guidelines, Covid-19 Triage Algorithm, says in the first box, to Assess using the Clinical Frailty Score, and “Consider comorbidities and underlying health conditions.”
Those thought least likely to survive will be given palliative care only. Now there is a list, with our details and NHS numbers, to put us in the “Critical Care Not Considered Appropriate,” group. They have a little list.
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Keep safe
Ongoing UK testing for clinically extremely vulnerable patients 
To be classified or not with the correct MPN
Apparently not at all vulnerable 
UPDATE FOR PEOPLE WHO ARE CLINICALLY EXTREMELY VULNERABLE – new shielding measures under the new national restrictions in England 
