Government guidelines

[Mostew]

Just had call from GP practice saying I should shield . As I havnt had a letter or anything I have been going out for all these weeks keeping to guidelines. They are a bit behind arnt they . !!!

If I’ve been ok before it really doesn’t make sense for me to restrict myself more than I have been ... especially as I’m only taking aspirin and feel well

Does anyone else feel same ?

[mhos61]

Yes, I do.

I haven’t received a letter (ET Jak2+) age 64 on low dose hydrea and aspirin, I have no other comorbities.

I am being sensible, walking late in the evening, crossing the road when necessary, shopping online etc. As you say, it’s a bit late now!

[Mostew in reply to mhos61]

Thanks for your reply . Glad you are getting out . I’m lucky and live by cliff tops and fields . Almost private beach as the steep cliff walk is not for everyone! I go for a walk when I feel like so few people around here .

I appreciate how lucky I am

Warm wishes to you

[Jennytheb]

Hi, glad you are ok. I understand how you feel but just enclosing a bit of the letter which I keep referring to when I think its unnecessary to not shield - "You have an underlying disease or health condition that means if you catch the virus, you are more likely to be admitted to hospital than others". This may or may not be the case but I keep thinking I would rather not be admitted to hospital so I do adhere to staying away from shopping etc. I do go out walking as rural where I live.

This said I had a very bad day yesterday wondering how I will get through it (very selfish of me when so many others are really suffering!) and broke down in tears when speaking to a daughter.

Hope this gives you a little more info, still think you should have had the letter anyway though our post is really bad, my letter dated 9 April didn't arrive till 20th.

Take care.

[Mostew in reply to Jennytheb]

I do hope you are feeling ok . Sometimes it good to have a cry and let it out!!

I’m just listening to a program saying some ethnic groups might be at more risk , so many ifs . That’s why I think we must all do what we are most comfortable with so long as others arnt put at risk because of our behaviours.

Warmest wishes to you

[Paul_1971]

I didn't get mine until last week. It hasn't altered the way I am approaching matters.

Its easy to understand the frustration people feel but personally I think its good people are still being advised.

It would have been easy after the first round of letters for the NHS/GOVT etc to say well we did our best, at least they are continuing to identify people. Hopefully it will help improve the response in future if anything like this happens again.

I am sure when it was decided that people were going to get written too it wasn't as simple as googling 'give me the address of all people who should be shielding'.

Lets face it you only have to read through posts on this forum historically which demonstrate the different attitudes towards people with our illness from GP's etc. I myself have had my condition dismissed by my GP in the past as nothing more than a blood disorder because, in his own words 'hes old school and thats what it always was', he refused to sign my free prescription certificate because of this and I had to go elsewhere, so if that attitude is not uncommon then that has got to be an example of why people with our conditions, and no doubt others were maybe over looked in the first instance.

Writing out for the flu jab is different, you aren't asking people to change their way of life, lets face it some people who will have been identified as vulnerable will be working and may not be fortunate enough to work from home, asking someone to stop home from work with little financial support is a big ask, its important that people weren't asked to do so who didn't need to.

For me, and many like me who can work from home, even if the letter is filed away because we understood the requirements, its going to be of massive significance if and when work places start to ask us to return to the office. For me to be able to show that my employers will mean I will be able to continue to work from home until the government says we shouldn't shield anymore. I would not be the least bit surprised to see the 12 weeks extended.

[Mostew in reply to Paul_1971]

Thank you Paul for your detailed response

[Mostew in reply to Paul_1971]

Sorry hadn’t finished . Pressed wrong button !!

I guess I feel , almost, ‘the cats out of the bag’ . Think as it is such an unknown as long as I don’t put others at risk I’ll do what feels right for me .

Take care . Glad you are able to work from home

Warmest wishes to you and everyone

[Dovme]

Hopefully we will get some clarity from the webinar today?

[Mostew in reply to Dovme]

Maybe but maybe the clarity wil change again next week !!!

No ones fault , it’s such an unknown . Please let me know the interesting bits from it .

Warm wishes to you

[Norman45]

I can only praise the organisation behind shielding us MPNers.

I’m 75, have post ET MF (stage 3) and after logging onto the Government website via Sainsbury’s to register as a high risk person, I got a text back a week later to say they were processing my details.

At the same time I rang my surgery to make them aware I was high risk and would need the NHS letter from them and they said that would happen once notified by the NHS.

Sainsbury’s then sent me an email saying the NHS had put me on the register as highly vulnerable and I could order home delivery food every week.

There have been a couple of hiccups ordering online but mostly it works well and my wife and I, thanks to more home cooking, are probably eating as well as we have ever.

I have since received a call from an NHS call centre checking to see if I was getting food online deliveries and was there any further help I needed.

A few days later I got another call from a shielding team member at our local council to see if we had any problems. They’re going to ring me every week to check we’re going on OK.

Thankfully we have a large rural garden and a neighbour let’s us roam his fields behind our house for exercise.

It must have been a massive undertaking to get this programme of shielding for 1.5 million people and I know there are quite a few anomalies but for me it has worked.

I’ve managed to postpone my eight week blood test for a further five weeks but I can email my consultant directly and for routine consultations she rings me.

So from me a big thank you to all the people in the NHS and the army of workers trying to make these systems work as smoothly as possible.

[Mostew]

So glad you are being well looked after . So many good people about working hard

Warmest wishes to you

[Norman45 in reply to Mostew]

We had a box of groceries from our Borough Council delivered to the door today. We sent it back - with our best wishes - to go to someone more in need than us.

I can’t praise enough the organisation behind this great effort to protect and support the high risk group in the UK.

[Hidden in reply to Norman45]

We have now had emergency food boxes but could not sent them back. They were left in the poach without the deliverer ringing the bell and I nearly fell over them!! We had a call from the NHS checking on us after the first parcel and said it was very kind but we now had a priority slot free of delivery charge from ASDA and do not need the box. The following week another one arrived!! ASDA put a Lindt Easter Egg in as a gift with the Easter week delivery. So kind.

[nivana]

Pleased that you are getting help during this lockdown, which I am sure will be extended? Ihaven't received a letter as an extremely vulnerable person. I have phoned my surgery to ask them about this but they say my illness does not qualify me to be in this list. I referred them to the MPN website, but still no joy. I was hoping to get a spot on Tesco's delivery, but don't qualify without a letter and obviously won't get my medication delivered. I have ET and PCV and a defective heart chamber. Take care everyone and keep well. Love and blessings to you all.

[Mostew in reply to nivana]

W hat a pity you can’t have my phone call saying I’m to sheild !! So strange when I am not as much in need of it as you .

Can’t you get a letter from your consultant ?

Take care

[nivana in reply to Mostew]

The gov and NHS lines have said my surgery should send the confirmation. So stalemate!! Best wishes

[Mostew in reply to nivana]

What about speaking to Hematology nurses . I find them very helpful ?

[nivana in reply to Mostew]

Yes, I will try that, maybe they can do something. Thanks

[Val_P in reply to nivana]

Hi I registered on the Gov website. I left it a week and then phoned my usual supermarket where I shop. I told them I was registered on the gov vulnerable person list. They took my details and told me it would take a couple of days for it to be checked and processed. Hey presto I’m now receiving priority delivery.

[Val_P in reply to Val_P]

P.s when I spoke to my GP about not getting a letter they said it doesn’t come from them it comes from the NHS.

Last week I actually got my letter. This was after I’d registered on the Gov website

[nivana in reply to Val_P]

I registered on the gov website site and they sent me a message to say I needed to contact my doctor, which I did and he says I am not eligible to be registered as an extremely vulnerable person. I referred him to the MPN and bloodwise websites, but he is still not doing anything!! Not as straightforward as I thought!!

[Mostew in reply to nivana]

Contact local MP ? ( if u have the energy )

[Val_P in reply to nivana]

You need to report your doctor

[nivana in reply to Val_P]

I phoned the surgery again today to see if they had amended my coding since asking them to look at the MPN and bloodwise web sites. They reiterated that they did not regard PCV and ET as being extremely vulnerable and my coding remains the same. It is ridiculous as well as PCV and ET I have had a PE and now have a defective heart chamber and fluid in my heart. Can't win, but I will try my haemo next week. Kind regards

[Val_P]

gov.uk/coronavirus-extremel... This is where I completed my registration

[nivana in reply to Val_P]

I did register some weeks ago, but will try again. Thanks