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
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.
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
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.
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.
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.
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
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
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?
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 ??!
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.
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?
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!
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!"
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.
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
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.
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.
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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