Sorry about going on: Sorry about banging on about... - NRAS

NRAS

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Sorry about going on

27 Replies

Sorry about banging on about shielding letters.

I spoke to my one set of next door neighbours for the first today since lockdown. She is in her early 40s no illness no medication she got a shielding letter and priority shopping. Which she turned down( she said if she had known she would have given it to me) she contacted her Gp who confirmed it was a mistake and would have her taken off the list. She continued to get shielding updates even the recent one about coming out of shielding. She gave up trying to contact people to get taken off the list. It’s still a mess

27 Replies
springcross profile image
springcross

Yes and it will go on being a mess until someone who knows what they're doing sorts it!

Pippy25 profile image
Pippy25

Afraid so...and I'm sorry to go on about this but to date I've had 13 messages from the council on my late dad's answer machine offering him help, support and saying that while they are struggling to get in touch with him should he need help or support. Despite informing them of his passing, he has also received a shed load of leaflets and a brochure for Parsley Box ready meals. Meanwhile his living daughter has heard nothing, I think when it has worked it has been an asset to those who are in genuine need and have no wish to sound like woe is me, but for some it has been an absolute mess and people who should have been contacted haven't.

rab1874 profile image
rab1874

Don’t feel the need to say sorry,you were let down by the system when you needed help,I think it was a post code lottery where you lived,I’m in Oban west coast off Scotland and had a few letters and phone call from the council asking if I needed anything,so rant away that’s what we’re here for xxx

AgedCrone profile image
AgedCrone

Like most things connected with this Pandemic we just have to use our common sense & get on with our lives.

We know it’s not going away any time soon, & we also know that those supposedly organising “things” could not organise a tea party....even if you gave them the kids, the jelly & the ice cream!

So I’m afraid it’s time to demonstrate we are intelligent human beings...& show that we CAN organise our own lives ...don’t dwell on what a mess it is......we just have to get on with living our lives as best we can.

Shops are open.....& slowly everything will become the new norm.We might not like it....but like R.A...we have just got to accept it.

Pippy25 profile image
Pippy25 in reply toAgedCrone

As initially upsetting as it was getting calls offering support for someone who is no longer here versus nothing for someone who is, I've simply gotten on with things and as you say have had to accept this is how it is. The people concerned were just messengers doing a job and simply ringing numbers from a list, be it correct or not. In the meantime I could have moped about and suffered or I as you say can show them I am a fighter, show my resilience/ resourcefulness and turn this thing around. Like RD it's not a life I would have chosen, but it's life and I'm learning to live it.

in reply toPippy25

I too just got on with it and made my own choices but it made it incredibly difficult getting proof for work. So many phone calls and emails . The people who could have helped were redeployed and the covering staff were not confident enough to help I was just passed from pillar to post. Gp was and continues to be useless just says contact the hospital. I’m a proactive young 😜well ish person who could fight my battles there are others who can’t I worry about those.

Pippy25 profile image
Pippy25 in reply to

I take my hat off to you in respect of having to seek proof for work and the frustrations of battling your way through being passed from pillar to post. It feels like no one wants to take 'ownership' of the situation and because there appears to be no clarity in some instances, they as it sound like in your situation are quite happy to pass you one to someone else to take the mantle of explaining and the circle of confusion/ frustration continues. I am so sorry to hear this x

springcross profile image
springcross in reply toAgedCrone

😂😂😂 Kids, jelly and ice cream, yes I can quite see that, what a good description.

sylvi profile image
sylvi

I have had shielding letters from the hospital by 2 and 1 by the government.xx

Lina282 profile image
Lina282

I didn't get anything from anywhere 😕 I tried to book priority shopping but I couldn't as they said I am not on their list .... so I am completely forgotten even if I have RA since 2017. So don't worry you are not alone xx

AgedCrone profile image
AgedCrone in reply toLina282

I am70+, diagnosed in the last century & had heard nothing until this latest letter telling me I am ‘extremely vulnerable & must continue to shield’, As nobody had ever told me to start shielding in the first place ....I don’t see how I could continue!

Especially as I do have a letter from my rheumatologist saying I just need to self isolate.

For the last few months, a neighbour has shopped for me..I went for walks and drives & just generally took care of myself....despite being in pain from fractured vertebrae after a fall.

We have to nip in the bud the attitude that we need “looking after 24/7” by the Government....just because we have RA/RD. We surely don’t need a letter for everything?

Thankfully we have heard of very few on this site ..if any in fact....who have been hospitalised with this virus... that surely indicates we are not nearly as vulnerable as some are frightened we are.

As long as we take the sensible recommended precautions we will be fine.

After all before CV19 we all managed.....we didn’t need free food.......of course some people do need help with their shopping...but we paid for our own food.

What we really need now is for our rheumatologists, our rheumy nurses and our GPs to be able to get back to providing the services they could provide prior to Covid19.

This virus may go away ....or it may come back........but I think it really is time we started to get on with our lives.....after all......we will only be making ourselves & our families miserable , & if we don’t soon get back to work ....this time next year....for some there might not be any work to go back to.

There will always be stupid people like those who caused all the trouble on the beaches last weekend ....we just have to rise above them,avoid them & behave sensibly and look after ourselves....if we can cope with R.A....we can surely manage to get back to enjoying our lives.....even if that means behaving a bit differently?

Lina282 profile image
Lina282 in reply toAgedCrone

Absolutely agree 👍

allanah profile image
allanah in reply toAgedCrone

There is the point that a lot of people with RA were shielding thus not going out or seeing people therefore didnt catch the virus , cause we were careful staying in ??!

AgedCrone profile image
AgedCrone in reply toallanah

As I said ....if we use our common sense......we will be fine...I have been into a couple of supermarkets & everybody is following the arrows on the floor...& no one gets ratty when you (well me) over shoot what you are looking for & back up!

Obviously you choose when you shop.....there are still queues to get in sometimes.......you just don’t go then.

Much as we don’t like it....we have to adapt.

The supermarkets have employed staff to sanitise your trolley & they provide hand sanitiser stations throughout. All very reassuring... ..which as it will be like this for a long time. ...is a good thing.

The worst bit is to avoid the plastic dividers when you queue between two check outs......I kept walking into them!

I have just watched a very sad Docu /Info programme on elderly people in care homes, & after the completely shambolic way this virus has been handled .....that is definitely a sector that must be addressed as soon as the Pandemic allows.

Particularly in the way Care Homes are licensed & inspected,& how care workers are trained & paid.

Through no fault of their own, they were , & still are completely out of their depth.

allanah profile image
allanah in reply toAgedCrone

Yes hard , but my point was folks with RA didn't catch it , not because we are not as vulnerable (as you said above, ) it us more we havent caught it so much due to shielding and not being out there in general circulation. That's exactly why we were asked to shield in the first place because our illness and drugs made us more vulnerable to being hospitalised. So I do feel we need to be much more careful than the low risk population. And do what you personally feel is comfortable?

AgedCrone profile image
AgedCrone in reply toallanah

But we can’t wrap ourselves in cotton wool or hide away like Lepers forever.

We are going to adapt & cope.....on the scale of vulnerability we are nowhere near as compomised as those with active cancer receiving chemo....or those recovering from organ transplantation,

So let’s be optimistic...not keep finding reasons not to get our standard of life back to as near normal as possible.

Take every precaution of course & start to enjoy life again...I certainly don’t want to go through another 4 months like the last 4!

allanah profile image
allanah in reply toAgedCrone

I'm getting chemo and just finished radiotherapy and have heart condition plus lupus plus asthma and RA and steroid plus TCZ plus leflunomide.... Think I'll hide a bit longer😂 !!! Hope a vaccine is found for the likes of me, but yes as the unions used to say " all out!"

AgedCrone profile image
AgedCrone in reply toallanah

I’m sorry you are having such treatment...I too had 6 weeks of radiotherapy, & it is very draining....but hopefully in a couple months you will be feeling the benefit & will be more optimistic.

But for those of us not presently undergoing such therapy, we should listen to our rheumatologists & try to get back to a semblance of normality.

bubblyalex profile image
bubblyalex in reply toallanah

Absolutely... and that is much more likely to be why there aren’t many cases.

Denise64 profile image
Denise64 in reply toAgedCrone

Totally agree xxx

Pippy25 profile image
Pippy25

I'm sorry to hear the stress it has caused with supermarket slots and that it has been so hard to get a supermarket slot without being on 'the list'. As with the calls & leaflets to my late dad it feels like a lot of resources have been wasted and those who are in need may have slipped through the net. Take care

Fifi2 profile image
Fifi2

Have to say my experience has been spot on .

Had to wait a little for the letter then I registered online .

Rang tesco and got on the priority list

I didn’t accept food boxes as I don’t need them I can do my own shopping now

I did go out for a walk with dog from the beginning, again being sensible staying away from other people .

I only needed the letter for work so I’m furloughed for July now as I can’t keep my distance whilst working ( frontline staff )

At the end of the day it’s only advice they are giving .

We have to be sensible here and do what is right for us .

AgedCrone profile image
AgedCrone in reply toFifi2

It’s that good old common sense again!

You are right...we must each decide for ourselves how we are going to cope & just get on with it.

Right now I’m staying indoors.....oh did I mention? It’s raining golf balls !

medway-lady profile image
medway-lady in reply toFifi2

I agree and same here but no dog!

Pitbull2017 profile image
Pitbull2017

I think there is a lot of misunderstanding regarding being on the vunerable list, having RA and some other illnesses doesn't necessarily put you on the vunerable list, its what medication you are taking if you take a immunosuppression medication then you become vunerable, I haven't read anything and no one's said anything to me but I can't believe the Gov can take the lead on this, surely healthcare your GP or consultant must inform the government what patients are on the decision must be a medical one, for the life of me I can't believe the gov look through our health files I don't believe they would have the time or manpower, I'm also not sure it would be legal for them to look at our medical history , surely the decision as to be a medical one, they inform the government who should be on the vunerable list, let's face it how long would it take your Dr's surgery to come up with a list they've got all the information in front of them, I"m not a political animal but I can't see whatever government is in charge them coming up up with a list involving health and medication it's got to be done by medical professionals, if not we are all in trouble.

medway-lady profile image
medway-lady

I think we have to be realistic the sheer numbers of people involved means that there had to be mistakes given the time taken to do something quickly. I'm sorry you feel such angst but please let it go people make mistakes, its a fact of life and I can promise you that fretting won't make any difference; so you know someone who got a shielding letter who didn't need it. I have no idea why it appears some were missed and some shielded when no need. But suspect the need to pull together so many NHS records which must number the entire population with numerous medical conditions and cross reference with GP's then all the area health authorities then pass them to the local authorities for the boxes and also send to the supermarkets all ignoring data protection in just a few weeks.

Not everyone has a flu jab or was old enough. So did you neighbour qualify for a flu jab. I find it puzzling as my first letter followed a text from the GP.

As the NHS has no one size fits all computer system it had to be a logistical nightmare. I applaud the government for even doing the shielded scheme and the relativly few mistakes. If they took 66 million records identifying down to 2.5 million it is a remarkable achievement.

I'm not a political person but putting aside the DC issue the effort made to help people will put the younger generation into difficult financial circumstances for many years and it was done to protect us the vulnerable. I thank them all.

embroy profile image
embroy

I know everyone was shielding, doesn't matter if you got any disease. It's better to be indoors. As there are a lot of people who have it, so it's a great relief that we are all safe. Better Safe then Sorry. It's a long time, before the shielding will stop.

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