Further text from NHS re Coronavirus. - CLL Support

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Further text from NHS re Coronavirus.

mbear profile image
32 Replies

Hi everyone. Hope this lovely weather is adding a ray of sunshine🌞 to your day but still observing shielding instructions.. I've received a 2nd text from NHS re coronavirus and wandering has anyone else received it. Briefly it states:- You can open a window but not go outside your property. Ask others to take rubbish to bins etc. Am now wandering does this mean I can't go into my garden?🐞🌻

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mbear
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Newdawn profile image
NewdawnAdministrator

Yes we can go into the garden. This post clarifies from Govt advice;

healthunlocked.com/cllsuppo...

NHS Coronavirus Service: - Keep moving to stay healthy

nhs.uk/oneyou/for-your-body...

- Do some simple stretches and walk around.

- Be kind to yourself

nhs.uk/oneyou/every-mind-ma...

-Spend time doing things you enjoy - reading, cooking and other indoor hobbies

- Try to eat healthy, well-balanced meals, and drink enough water

- Spending time with the windows open to let in fresh air, sit and look out at the world where you can, or get out into the garden or sit on your doorstep if you can.

To opt out reply STOP’

Newdawn

mbear profile image
mbear in reply to Newdawn

Well you've brought a ray of sunshine to my day🌞. Thanks for that, my garden is going to be my life line in these difficult times. Not to be able to see a little bit of nature seemed rather daunting. However not dismissing those people who don't have a garden, my thoughts and good wishes go out to you.

Yes, I received that text too.....

Tomorrow we'll receive a text telling us to stay in the bathroom, and never leave it?

mrsjsmith profile image
mrsjsmith in reply to

It’s all very confused information. 26/3 I was told to open windows, get out in the garden or sit on my doorstep.

Text no 9 from 29/3 tells me to share my experiences over the phone or on social media ! Well folks I am now forgetting which day it is, and it takes me all day to do very little !

If you want to add some excitement in your life and get your heart racing try organising online prescriptions with Boots for home delivery 😕. I am not sure who to blame but am reduced to asking a neighbour to collect from my local pharmacy as this is the second time it has ended up there.

Colette x

in reply to mrsjsmith

I think the various government departments, may be giving and receiving conflicting information....

I listen to what they say, but, draw my own conclusions.....

Stay safe...

mrsjsmith profile image
mrsjsmith in reply to

Thank you,

and you. The Marigolds ( rubber gloves ) are getting a lot of use.

Colette

mbear profile image
mbear in reply to

Well I'm thinking the self same thing.

in reply to mbear

'Dad's Army' comes to mind..... Or, am I being too cynical?

I think, I'm going stir crazy.

mbear profile image
mbear in reply to

Don't panic Mr Mannering comes to mind....yes, it is reminiscent of Dads Army.

morepork profile image
morepork in reply to mrsjsmith

Had to smile about the pharmacy dilemma Colette! I might be in NZ but the same struggle about how to collect the actual meds is taking place for those of us locked down here - still not sorted, as all the willing to help are over 70 and also locked down!

Fortunately my Ibrutinib is couriered from the Hospital directly to me. 😊

mrsjsmith profile image
mrsjsmith in reply to morepork

Sadly the saga continues, my neighbour went yesterday to collect my prescriptions only to find my chemist had changed the opening hours and were closed.

Ibrutinib supply for another month, but I hope mine will be couriered

as well. Going to a hospital is a big ask for any friends or family.

Colette

Rhule profile image
Rhule in reply to

🤣🤣🤣🤣

stunned profile image
stunned

Yes I got the second text telling me I can open a window but don't go outside and not to take rubbish to my bins or put the bins out for the binmen.

I live alone so who exactly is going to take my household rubbish to my bin for me without having to come to my house to do so in the first place which is against the rules, lol.

Being able to do my gardening after spending all week in doors working, is the only thing keeping me sane and allowing me some fresh air..

It is very confusing when the NHS say one thing but other websites say conflicting things.

Then they wonder why so many people are ignoring the rules, lol.

Anne

strongmouse profile image
strongmouse in reply to stunned

Hi we have a garden which is wonderful at this time and I feel for anyone self-isolating who is in a flat or apartment.

My husband does put the bins out but before touching them to bring back he wipes down the handles with a bleach spray and anywhere he touches then washes his hands well as soon as he comes back in. The virus is spread by droplet infection from someone sneezing or coughing or touching you or a surface. Imagine soot on the hand and fingers. So as long as you are near someone else (social distancing) you need to ensure that you don't pick it up from a surface. The length of time which the virus lives on a surface varies (I think plasctic is about 3 hours). As long as you wash your hands and surfaces then it should be alright.

It is about being safe, but letting rubbish pile up would be unhygienice!

Sometimes I think the people who send out these messages live in some sort of bubble or ivory tower which most of us don't inhabit.

Newdawn profile image
NewdawnAdministrator

So far, starting on the 24th March, I received the initial ‘vulnerable notification’ text followed by another 7 texts, a full explanatory letter from my GP, a letter from the Dept. of Health and Social Care, a call from a Community Care Organisation and 2 phone calls from the Council Shielding Team!

I’m beginning to believe I’m worse than I thought I was! 😃

Newdawn

Fran57 profile image
Fran57 in reply to Newdawn

Hi.

You really are the centre of attention😂

Paul has just had a call from our local council as a follow up to the government text, saying that we will have a weekly basic grocery delivery.

We’re okay for food at the moment, but I’m glad he’s at least in the system, in case we need anything in the weeks to come.

Sending positive thoughts ( while I’m having them...could be very different by tomorrow!)

Fran 😉💕

Newdawn profile image
NewdawnAdministrator in reply to Fran57

Thanks Fran. I’m not the centre of clinical attention however. No contact whatsoever from my trial team so no clue what’s happening to my consult, meds or IVIG. I’m hoping they’ll just courier the I&V.

Stay safe,

Newdawn

Fran57 profile image
Fran57 in reply to Newdawn

Oh, I do hope that is soon sorted for you.

Sending you a big hug 🤗

Fran 😉

Newdawn profile image
NewdawnAdministrator in reply to Fran57

Many thanks Fran. Thankfully they’ve just rung and informed me my meds will be sent by courier but they’ll be no consult, blood tests or IVIG for the foreseeable future.

Newdawn

Fran57 profile image
Fran57 in reply to Newdawn

Good news... 🤗

I’m not sure what Paul will do about getting a blood test next month...I think that they will just postpone for another 3 months, because he is (🤞🏻) very well in himself, even if the numbers are suggesting more treatment soon. Now is not ideal to start anything new.

Stay safe.

Fran 😉

robertsw profile image
robertsw in reply to Newdawn

Hi

I think you must be getting mine 😂 I am still waiting for nhs high risk letter! I have made several calls to gp surgery only to be told it’s not from them. A helpful receptionist however did send me a letter headed note which stated my condition so I could at least forward this to my employer. I totally understand that it is very difficult and all new ground that staff are having to do. To be honest it took me a couple of weeks to adjust but I am quite liking the peace and isolation now. I made myself a planner for each day and try to stick to it. Plus I am probably doing more walking now than ever and that’s just round my not that big a garden as hubby won’t let me go out. He is sticking to the advice to the book bless him. So from an aerial view I must look like a mad woman walking round in circles 😂😂 xx

ronbuc profile image
ronbuc

I’m rather envious of the attention you are all getting. I’ve been receiving treatment on the Flair trial for five years, yet I haven’t received a single text or letter telling me I’m very vulnerable, despite applying on 111 for that status. The hospital suggested I ask the GP surgery to make sure I am on the NHS information spine, and the GP receptionist said she had not heard of it.

djdebbie profile image
djdebbie in reply to ronbuc

Ps sorry I put this as a reply by mistake instead of posting in general

strongmouse profile image
strongmouse in reply to ronbuc

I would suggest that you ask to speak to a doctor directly rather than the receptionist. There has been some confusion but GPs should by now have been contacted to check and update the register of people at high risk from caching the coronavirus.

ronbuc profile image
ronbuc in reply to strongmouse

Thank you. I have now learned that new guidance went out yesterday to GP surgeries in my CCG area that should resolve matters. I have also used “Patient Access” to send a note to my GP.

PumpkinTyger profile image
PumpkinTyger

I didn’t receive anything until Tuesday...which did make me secretly hope that this meant they considered that I didn’t really have CLL (low levels, on W&W and feeling healthy) and then got two texts on the same day which paradoxically made me feel that I must be worse than I thought. I know that’s all in my head and I should carry on being sensible in exactly the same way...I’ve been going out for short cycle rides up a local hill to expand my lungs, early in the day when it’s really quiet, and I can’t see how that exposes me to catching anything. I don’t stop and no one has been coughing on my bike. A friend has been bringing shopping and we chat (2 metres) with me on my doorstep. I think if you take an intelligent informed approach, which those of us on this forum are, then you can make a sensible decision about how to behave. I have a friend who has recently had a liver transplant, he left London to spend lockdown with his 85 year old mother in the countryside and she insists on going out because ‘she’s lived through the war and her husband has died so it doesn’t bother her’. He may have to come home and spend the rest of the lockdown in their converted shed in the garden. There’s no convincing some people and these are the people that these scary texts are aimed at.

mbear profile image
mbear in reply to PumpkinTyger

Hi well I'm on watch and wait and levels though rising, are fairly stable but I've had 3 texts from NHS and 1 from GP. So I wouldn't worry that you're worse than you think, seems a bit of a lottery who get their texts. Take care.🌻

I just can't believe how phenomonly different it is here in the US. And not having universal healthcare.😳

mbear profile image
mbear in reply to

I think we are so lucky to have our NHS and all the wonderful team of health care workers here in the UK.Hope this situation has made people value what we have. As an x nurse myself, I know that we have never been paid on a par with other professionals, think this needs to change. Though no nurse or doctor are in it for the money.

djdebbie profile image
djdebbie

Your garden is your property 😊

djdebbie profile image
djdebbie

If you have any other conditions they may have coded you for that instead of for the cll. I was coded for a different condition so didn't automatically get the letter but I asked my GP for it and was given a choice as I'm on watch and wait whether I wanted to have the letter or not. The criteria for getting it is that you are at any stage of treatment so it's a grey area whether you get it or not on watch and wait. I asked to have it so I could be put on furlough.

kensim9 profile image
kensim9

Garden should be safe (as long as you don't have Gardner from outside your household 😁).

Actually got advice from Scottish Borders Council to wipe down with wipes, and before putting out for collection, the and before bring back.

Useful as I had not thought of that one!

Besides my wife takes wheelie bin out 😁

Enjoy garden

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