The Shielded Community: Hi Everyone, While I write... - LUPUS UK

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The Shielded Community

happytulip
happytulip

Hi Everyone,

While I write this it's 1am so apologies if there is some random waffle.

Today I was impressed by Nicola Sturgeon during her briefing as she directly addressed the shielded community, acknowledged how hard it must be and then gave a date in mid-June for an update about the next stage for the shielded people in Scotland.

I have been feeling more and more disappointed of late at the lack of recognition about the shielded community from both the government and media. It's mental health awareness week and while I consider myself to be a fairly positive and resilient person, I felt utterly crappy watching people on the TV talking about hoping to go on holiday in mid-June yet most of us have been told to say at home until 30th June at least!

It was a real kick in the teeth to see pictures of people out and about at the seaside, yet many of the general population seem to have forgotten that there are about 1.6 million people of all ages stuck at home.

I feel that the shielded community have no voice or advocate.

In my mission to get us heard and get answers I have been emailimg the office of the Prime Minister, Matt Hancock the Health Secretary, Hugh Pymm of the BBC and have been on national radio. I'm not blowing my own trumpet here, I am just trying to create a noise. But I don't think it's loud enough.

If anyone feels as forgotten and left behind as me I would thoroughly encourage you to email these people. Especially Matt Hancock who is contactable via the 'Gov.uk, Contact the Dept of Health and Social Care' website, and Hugh Pymm as he was kind enough to send a personal reply, not an automated one. His email address is easy to find if you Google him. He's also on Twitter.

I feel that if more of us spoke out then we would at least get more acknowledgement and possibly and idea of which direction things are moving in for us. Grass roots football seems to be more of a priority.

I'm banging this drum and have been for a while and my arms are getting tired and we need to be louder if we want to be heard.

My personal question is WHAT SHOULD THE EXPECTATIONS OF THE SHIELDED COMMUNITY BE ? (throw us a bone).

I'm reaching out to anyone who feels the same as me. If we want an answer or to be heard we need to be pressing the question to the right people. The more people who ask, the louder we will be.

In my view I think that we are together in this and if united we will be heard.

Please, anyone who feels this way, start banging the drum by emailing the right people and asking some questions. It takes no time. Let's hope they take note.

Lastly, this is NOT a political post so PLEASE let's not turn it into one. We are a united wonderful and caring community forum that is navigating it's way together through this awful pandemic together.

Let's put politics aside, stick together and get banging the drum to be heard.

Thank you.

HT 🌷

80 Replies
oldestnewest

Nice one HT - the shielded community needs a voice right now to find clarity regarding our situation. Could we do a “change.org” petition? Perhaps Paul could enable a link to be posted on this site to start with, that could then be easily signed and shared via social media for anyone else to sign? Just a thought. Xx

A petition would be good but takes time. In the immediacy writing to the Department of Health and Social Care will get the message across sooner. It also has the benefit of having a personal message.

Yes indeed, nothing like a direct and personal approach. I’ll send an email today. I’ll also do a quick google and see if there are any petitions already in place regarding the shielded community. Have a good day xx

Get back to us about petitions if you find one? And if you don't do you know how to set one up? I have no idea.

I would have to be a petition for direction and acknowledgement I think. We have to be realistic in that the government can't come up with a clear black and white plan for all the shielded community overnight. But we should be addressed at the daily briefing as Whisperit says.

I have had a google and there are some petitions regarding shielding but nothing specifically relating to the question you raise. I can set up a petition and will need to get LUK’s permission to promote it on this site (and maybe HU’s permission to promote it on other health forums that they facilitate) before I do anything. I’ll email Paul and ask.

Meanwhile, for starters, how about this as a petition title, by all means amend as you see fit or if anyone else has a better suggestion, please post in reply!

THE EXPECTATIONS OF THE SHIELDED COMMUNITY REGARDING EASING OF LOCKDOWN RESTRICTIONS MUST BE INCLUDED IN THE DAILY BRIEFINGS

I think that is a very good heading. It might not be that they can do it each day, but it's worth a try!

Wow Horsewhisper, you've done loads this morning. 🤩👐💜

No problem! Happy to add volume to our collective voice! 😘

I coukdn't agree more ht as I too feel the same as you. It does feel like we've been forgotten and you know the shielded community are a big group who should be thought about.

Maybe now lupus uk wil help us lobby the govt and media as you've so cleverly brought this up. Thank you ht for what you've done . we must all keep banging away together as we'll be a more powerful voice.

Hope your coping pain wise. Xx

happytulip
happytulip
in reply to misty14

Email how you feel to the right people and let them know. A personal touch goes a long way x

misty14
misty14
in reply to happytulip

I did also think Laura Kuennsberg would be good to email ht. I'm a bit up to my eyes in pain and prep for appts but will do something when I can. I'm sure lupus uk will email the media too, they've been so proactive throughout this pandemic. We won't be forgotten ht I'm sure of it.

TAKE CAREXx

happytulip
happytulip
in reply to misty14

I thought of Laura and Fergus Walsh but can't seem to find email addresses. I'm not on Twitter and don't really want to set up an account.

Sorry to hear you are struggling. Rest up and take it easy. Breathe gently as poss. Sending very gentle virtual hugs x

misty14
misty14
in reply to happytulip

Thanks so much ht for your good wishes. I'm struggling to reduce the steroids because of my chest!. Sounds familiar?. Ha!.

I would have thought Laura and fergus contact info would be on Google. They Can't just be on Twitter , have you tried the BBC website. ?.I'm not on Twitter either and like you don't want to be!. Fergus is a good one to have thought about. I've liked the BBC coverage throughout this pandemic haven't yiu?. Much better than ITV.

Keep safe yourself ht and as well as possible. Xx

happytulip
happytulip
in reply to misty14

Don't reduce your pred until you feel ready. You don't want chronic pericarditis.

I've managed to find Laura's email and sent her a message. Everyone seems to be on Twitter. I suppose it's because it's so instant and easy to share.

You rest up and take care x

misty14
misty14
in reply to happytulip

Hi ht, thanks for your lovely message. I've already got the chronic version I think because it's so ongoing!. I've got down to 15 mg a week and getting more symptoms so will have to phone the Rheumy's about it next week as they say reduce by 5 mg a week!. Is that what you have to do?.

That's fab ht you've emailed Laura. I think she's a great corresponder as she's not afraid to ask the politicians difficult questions. Do let me know what she says.

I may have recruited another forum member to this cause. Extremeduvetdaze. Do you know her?. She's just written to her MP about the Hydroxy supply issue so I've asked her about this . I'll let you know what she says , I'm sure she'll agree as we seem on the same wavelength about most things

Typing it to her has made me think we've also not been mentioned because all who are shielded have been told to do it till end of June which is quite a way off yet isn't it?. Easy for us to be forgotten !.

TAKE CARE too ht, keep well and safe. Xx

happytulip
happytulip
in reply to misty14

No way? I have to drop down by 1mg a month otherwise my pericarditis just gets worse. Poor you, it sounds like your GP needs to listen to your symptoms. How many times a day are you taking cholchicine?

Well done for spreading the word. I've also emailed my MP.

June 30th sounds like a.long way away. But they want to get schools back on 1sy June and they started talking about that weeks ago. If they were going to ease up on the shielding then they should be beginning to talk about it now in time for July. Especially as no one person is the same, we all have different needs and level of risk.

Take care Misty x

misty14
misty14
in reply to happytulip

Thank you ht for your very supportive message. I usually have to reduce my steroids a 0.5 mg a month as I get into trouble like you. This is a different plan from my Rhdumy . He said start at 30 mg for a week then reduce each week by 5 mg till I'm back to 5.5mg. Trouble was thanks to my GP surgery not being on the ball I coukdn't take the 30 mg so did 25 mg and now I'm up to 15 mg I'm noticing a difference!. I'm glad I've got the rescue steroids now so that can't happen again thanks to you. I'm taking colchicine 3x a day at the mo, usually it's 2x when better.

I agree re schools planning needed early so us shielded people need thinking about early!.

I m interested in your response s and will email my MP. I haven't been sure what to do so its on my to do list. It sounds ridiculous but I've had so much more admin to help my parents that I'm struggling to do it all. Not being well doesn't help!. I thought I'd be bored but there aren't enough hours in the day and I'm not getting to the things I planned to do!.

I must make notes for an important appt on Tuesday. I'll let you know what my contact says too.

Did you see that Fergus Walsh has tested positive for the covid antibodies?. He's amazed but he did go to a lot of labs for his reports etc. Hugh Pym ought to do the same?.

Keep us posted and take careXx

happytulip
happytulip
in reply to misty14

Will do. I think you should be resting up as much as possible with pericarditis. Do take care x

misty14
misty14
in reply to happytulip

I am trying to ht, thanks. I've had to say to my parents who are in their eighties I need more help and consideration!. It's not easy with this pandemic bringing new stresses we've not had and I don't want to worry them as mum isn't well and finding this shielding hard. It's a tightrope to walk and sometimes we fall off don't we?. But we get back on and keep trying. Xx

misty14
misty14
in reply to happytulip

P.s ht, coukd you tell me what you wrote to your MP and I'll do similar!. I've got her email address and that would really help me. Xx

happytulip
happytulip
in reply to misty14

I just wrote about how I felt. Basically, that I thought that the shielded community aren't acknowledged by the politicians in the daily briefing, we don't feature in any road map out of lockdown. My personal question wa "what she my expectations be as a shielded person?"

Even if they told me I'd have to wait for a vaccine, I would rather be told that than be told nothing.

I put in my email that it was disappointing to see grassroots football and summer holidays discussed at the briefings but the progress of the situation with 1.6 million people being shielded didn't seem important to feature.

I acknowledged that while football, the economy, business and travel was important, so are the shielded community and we seem to have been forgotten because we are rarely acknowledged.

I said it would boost mental well-being for me personally if I the briefing and media focus could be more inclusive of the shielded. I also stated that I think it has set disability awareness back by years. I pointed out that not everyone shielding was over 70 but of all ages.

I said that it would take months to iron out a plan to get the shielded out of lockdown because of individual health risks and I was not expecting it to be safe for me to just leave my house on 1st July.

I finished by saying that I hoped that if the shielding bwas extended beyond the 30th June by another 3 months, then they would have the decency to address is at the daily Briefing and not just send me a text.

It's not how you break bad news.

That basically sums up the contents of what I have written.

I would suggest that you also copy your email to the Dept of Health and Social Care. You have to do an online Gov.uk form for that. Just Google Dept of H&SC and it comes up.

But I'd encourage you to write your own thoughts and feelings. You might have questions that I don't. It's a personal thing but I think we all have the same message in a way. We just want an idea of what is going on.

Would you agree whisperit and Froggie70 and Horsewhisper ?

Hi HT, I think your email is a really good template to use to email key journalists and politicians as it sets out the important points. We can all add our own personal angles as every shielded person has their own particular issues to contend with and specific questions that need answering. I’m going to email my local MP and the people you mention above and let you know the outcomes. Xx

Hello, agree 100%. And second Horsewhisper’s comments too. We need to sort out our priorities in this country. Can’t have some of the population going about like nothing happened with the rest effectively under house arrest. Sorry I’m a right grumpy bum tonight.

And I think I know why! My BP has shot up too. It's actually made me cry.

I just want to see my family and these ******** are putting any lockdown restrictions at risk. If over 32 thousand people hadn't died it would be laughable. But it's not. Over 32,000 people have died. It's completely unacceptable and unforgivable to not be apologetic!

Sorry, I'm a grumpy bum too.

Ooft. I’ve got blooming indigestion with all that carry on. I’m with you, so angry, how must those poor families who have lost someone feel tonight, another kick in the teeth. And NHS staff too, certain people out clapping, the total hypocrisy of it. I’m away on a rant again! Sorry.

Stay with us Froggster. Challenge the energy from the anger into something positive like emailing MPs and media to get the shielding voice heard.

Now more than ever we need to. After tonight's reports I fear that the lockdown restrictions will just be laughed at by some which means we will be restricted for longer.

I'm furious too. But we need to breatheeeeee 🤗

You are so right. I’m off to bed with a cuppa and watch kittens on YouTube. Night John Boy🤗

Night Froggster!

Yes, the more people make a noise about this, the better. Political representatives can be especially helpful; this last week a friend who works in Public Health reported how the whole department was sent into even more of a panic when a local MP raised a query about PPE in one of the local care homes. If you can get an MP, MSP or member of the Sennedd to take notice, they can really make things happen. x

misty14
misty14
in reply to happytulip

Hi ht, you make some really good , important points there so I will use them and do own words too. Thank you so much for also showing the importance of sending to dept of health!.

I had a look yesterday at the criteria for being in this shielded group and thiught it would only cover a very specialised group of people so not many but now you've said its over 1 million that makes a difference!. We should make our voices heard!.

I had an interesting talk to my GP last week as I haven't been sure about him and he made an interesting point that Rheumatology make us feel like there's a lot of us with CTD's but he said the reality is we're RARE!. He googled CTD and came up with globally there are 50 sufferers of a CTD for a million people!. He said in their ten doctor GP practice they expect to have 2 cases out of 2000 patients each and see a new one once every five years!. You have more rarer CTD's ht than I do!. Makes you think doesn't it?.

This is why we're so right to email these people and say don't forget us as we can easily be. There's power in numbers isn't there so I will do that this week. I'm sure lupus uk will do something too.

Looking forward to your replies and thank you for highlighting this need too. Keep safe and take care. Xx

misty14
misty14
in reply to happytulip

P.s ht, there used to be the All Parliamentary group for our illnesses at Westminster. Don't know if it still exists?. Xx

happytulip
happytulip
in reply to misty14

Hi Misty, yup, we're a rare bunch. I'm not sure about the parliamentary group. Paul should be able to help you there. X

misty14
misty14
in reply to happytulip

Hi ht, been meaning to say what beautiful roses you've grown!. Your very green-fingered. I've just recruited my cousin to the cause ht as he's in the shielded group too and he's in an area that has had a lot of cases!.

He feels the same about our coverage so sent a question he said to the virus team but it wasn't picked!. He'll write to his MP as he's good at battling for things!.

Be interested to know about the Parliamentary group, Paul will know for sure.

Keep banging and safe ht. Xx

happytulip
happytulip
in reply to misty14

Unfortunately I think any news outlets will be pre occupied with another bigger media story at the moment. And people say it's not a health issue! 🤦. Anything that detracts from this virus getting beaten is a health issue.

But I'll keep the emails going. I've recruited family to ask where we fit into the roadmap too.

Well done for everything Misty but REST!!!

misty14
misty14
in reply to happytulip

Well done to you ht too and yes i agree re health stories!. We must keep on fighting like we are!. At least you know your not alone in your thoughts.

Please could you tell my parents I need to REST. We've had a drain problem here today and mum was getting flustered etc. I've had to step in and I'm exhausted!. Always happens at Bank Holiday doesn't it?. Sod's law etc!. Hopefully dad has sorted it.

I'm resting now and will for rest of day as must do these appt notes for Tuesdsy!.

TAKE CARE yourself and I look forward to your updates. I'm sure Laura will reply, she's very businesslike and organised. Xx

I have 3 heroines in this whole mess: Nicola Sturgeon. Angela Merkel and Jacinda Ahern. Plus an amazing woman in India who also managed to keep her region safe from Covid - but her name escapes me. All have treated us like adults and explained why - in a dignified and competent way, in complete sentences ...

Hope it helps that everyone who thinks they were going to be able to go abroad on holiday is now in a similar boat. I can't even come to visit the family for the foreseeable!!!!

Keep banging that drum xxxx

happytulip
happytulip
in reply to PMRpro

Thanks Pro, just need those emails to be dropping into the right inboxes. We might get some answers then. X

happytulip
happytulip
in reply to PMRpro

Do you think your daughters would be interested in helping bang the drum? I think you said one of them had to come off the frontline to shield? Hope you don't mind me asking x

I've been shielding for nine weeks now and my problem is that I don't know what I want. It's going to take a lot of reassurance for me to feel able to leave my front door. Just because someone says it's safe now (whenever they might say that) will that be enough for me?

happytulip
happytulip
in reply to Prunes

You won't lose anything by emailing the Dept of Health and social care. It's the only way you will get any answers and the more people who email the more likely we are to get answers.

Great post, HT,

At the very least, we should be demanding that the daily briefings in all nations should include a portion directly addressed to those of us who are shielded. I'd add media outlets to the email list too, perhaps especially those which have programmes with interviews and phone-ins. They will take notice if enough of us are telling them how important it is to keep reminding people that this is about looking after people (rather than endless items about The Economy and Westminster shenanigans) x

👏👏👏👏 Great! Brilliant! We need answers. We are getting forgotten. Even if it's to tell us we have to shield for longer, (not ideal but at least we get answers). It just feels like we've become the conveniently quiet community. No way!!

It is putting disability awareness back by years.

Is great to know you'll be sending emails! I felt alone banging this drum. Anyone who can get a conversation started is helping.

We deserve to be acknowledged and addressed by the people that are in charge of this pandemic. We need to be heard.

We have needs that extend beyond a food parcel and tomato soup, (although gratefully received).

Let us know if you get any response? Hugh Pymm was interested in a story about shielding. Jeremy Vine didn't get back to me.

I did hear a shielding question put to a member of SAGE in the Cornavirus Podcast last night but it wasn't properly answered.

Just like when I put a question to a Dr from PHE. The question didn't get answered. I was fobbed off 😡

Well said. My job for today is to get the e-mails sent.

People are now more focussed on football and foreign holidays, I even heard someone going on about booking concerts and plays for later in the year. No one can be left behind.

Phew, you got me started there 😉

I’m in a bit of a different situation as although I’ve been told by Rheumatology department and a Consultant from another area of medicine I should be shielding a letter never arrived so I’m getting worried that as my boss still hasn’t provided a laptop to work from home (over 6 weeks now) I will be expected to be back in the office soon so we really need clarity over the whole situation.

You take care and keep up the good work 🤗

He still hasn't sorted a laptop? Stay where you are until you know where you stand. Keep safe.

Brilliant work on the emailing. It's surprisingly empowering. The more correspondence they get about shielding the better.

In life I've found that you only change things for the better by working away at it. We can do this!!

I actually feel like I’m raring to go this morning now I’ve got something useful to do. 🤗

You go girl!!

I can understand the frustration but I can’t see what else could be done at the moment for us ‘shielded’ or what more information can be given regarding length of time etc as no one knows due to the unpredictability?

The way I see it is that it’s for our own protection but it’s only advice, it’s not a law we have to follow. If we want to plan holidays etc like the ‘normal’ people then we can but at our own risk.

We’re always going to be more vulnerable and have to take different precautions. It might be hard to see everyone else resuming their normal lives whilst we can’t but I suppose most of us are used to that as that’s part of our disease anyway? It must be really hard for chronically well people to have had to cope with these sudden restrictions and health concerns so I do feel sympathy for their disrupted holiday plans etc. That may seem trivial to us but many of us have had years to adapt to our restricted lupus lives, the chronically well had a sudden shock at the start of this pandemic and it’s bound to have impacted their mental health and desire a return to their normality just as we would like a return to ours (well we’d all like a return to true normality of non chronically diseased of course!)

I suppose it would be a case of thinking what we really want from a petition and what could be realistically achieved?

I don’t think they’ve forgotten us, they just don’t know what to do with us - story of our lives 🙄🤣 but whisperit is right that an acknowledgement during the briefings would be a good step.

I’ve been hospitalised twice recently in two different hospitals and the staff said they were feeling much more positive that it was heading in the right direction and things had calmed down hugely covid wise so do think shielding restrictions may be relaxed a little after the 12 weeks but again it’s up to our own (and working with our drs) risk assessments. With a new disease and constantly changing infection landscape there will be little the government can do to predict -or inform - until science and medicine have got more of a grip on it x

happytulip
happytulip
in reply to Melba1

For me personally, I want acknowledgment in the daily briefing and to know what our expectations should be.

I know they can't give answers. Medicine isn't black and white unfortunately.

I want to follow the guidelines set in my shielding letter and I want to do everything that I possibly can to protect myself and other.

During the daily briefings sport, teachers, schools, airlines, businesses, the NHS, restaurants, travel, pubs have all been discussed. And all are important. But what about the 1.6 million people who are shielding? They are just as important as everyone else and they are hardly acknowledged.

The media have hardly mentioned them either?

I'm not saying that we are more important than any other group or topic. But other groups and topics are being discussed and we arent. Not in the briefing and not in the media.

I can only speak about how I feel and I feel forgotten. All 3 of my important telephone hospital appointments were rescheduled for September. The world seems to be getting back to the "new normal" yet millions are still stuck behind closed doors.

If I don't ask a question I won't get an answer. That's just me.

Melba1
Melba1
in reply to happytulip

Yes completely agree with you about the impact on our care with all the important consultations cancelled. I raised that with the government too. I think it’s going to have huge impacts on us for a long time as when appointments restart there will be such a backlog. I’ve been lucky and had a few telephone appointments but anything non urgent has been cancelled - until sep/ Oct

I was on 2 weekly rheumy appointments which then went to ‘see you in October’ and my GPs don’t think I’d have ended up in hospital recently if rheumatology had kept a closer eye. I also understand how busy they are and feel very sorry for my rheumatologist trying to cope with 18 hour covid shifts and me! He even rang me twice this weekend and spoke to my son for a long time to tell him what to look for and when it was time for urgent hospitalisation but that’s him as an individual rather than the department I think which is clearly struggling with messages not getting through and people getting sicker because their care has just stopped.

Very difficult for everyone but you’re also right that everyone feels differently about it and it’s important to say how you feel because that’s what counts and that’s what needs addressing too.

X

I think you're right to ask ' the question' (from Australia) and not so long ago we used to have daily briefing's from our chief medical officer and Prime Minister - backed up by deputies in all departments- as well as clear and concise advice from state leaders and their medical officers.

Now restrictions are lifting - things are as clear as mud - and here too - footballers problems and the utter despair of not being able to go to the footy are seen as more important than actual real problems.

I had to travel to a larger regional town for a long awaited pill cam and any joy of getting out was utterly anialated by the lack of social distancing - and utter lack of concern or enforcement of obvious rules. We've been extremely fortunate here with our infection rates but to me - it seems like a no brainer that we'll get a second wave here pretty soon and everybody will be inside again.

Its like everyone's just forgotten or are in denial about whats happening.

Here the sick are just not visable enough and brains can't constantly take in and analyse the horror stats and ratios day in - day out.

Some greater effort needs to be put into personalizing the devastation quietly going on. Here we have a suicide prediction curve that runs up against all the others - and was perhaps mis - used to ease restrictions ?

......nontheless - remember to make a point of bringing up REAL mental health issues and lack of support for the long term chronically ill - as an issue with you're complaints !

Best of luck with it.

xox

Happy tulip, as someone who is not shielding, my heart goes out to those who are in this extreme isolation. We don’t really have an equivalent in the US, but we do have many people who are vulnerable and will likely have to continue to be very cautious even with the loosening of restrictions.

I completely agree that there is not good information about what “opening up” will mean for higher risk people.

You do need to be heard.

Kx

happytulip
happytulip
in reply to KayHimm

Thank you.

Some of the things we need are:

1. Finally get food deliveries sorted. Still too chaotic.

2. Clarify status of vulnerable re home working.

3. Public messaging which says people must respect social distancing if someone says they are shielding and out.

4. Widespread mask wearing.

5. Return of medical support for our conditions.

6. Clarify science about when it is safe for us to go out. Where does R rate have to be?

7. Support for continued home schooling.

3 and 4 would allow us to go out occasionally. The rest is obvious. I feel we are at risk of being left behind.

Thanks for raising. Happy to write to my MP, though he is horrible.

I would encourage anyone to write to their MP AND the Dept of Health and Social Care.

I've also written to local and national media and would encourage anyone who wants to put a question or point across to do the same.👍

Great. I've got coverage for the supermarket issue.

How do you mean?

I'm a journalist and a couple of my colleagues have covered the delay in getting deliveries to people, and muddled messaging from supermarkets, using my story and others. I might try and get the 'what ending lockdown means to us' too.

BRILLIANT!! I'm finding bit so hard to get hold of journalists.

Essentially, all I am trying to do is raise the profile of people who are shielding because it feels like we're being left behind/forgotten. Well I do anyway.

If you think I can go about this in any other way then please let me know. I think it's important that anyone who is isolated is kept in the minds of those in charge. If you think of anything then maybe PM me?

I currently don't write for the newspapers myself (autoimmunity prohibits long hours in the newsroom!). But I am on a network with women who do. If you can collect stories about how ending lockdown and the muddle is affecting the left behind, I can pitch it to someone to write. Got an article in Marie Claire and the Express through this method so far. I can also send to the Guardian/Independent, and maybe write an op-ed myself for the Indie. Happy to help on this.

Melba1
Melba1
in reply to Treetop33

Perfect list treetop! X

Hi Happytulip, this is a great post , I missed this one so thanks misty14 for telling me about it!

It’s something that has bothered me too, we’ve been totally forgotten and I’ve heard from my next door neighbour who works for our local council ringing the vulnerable people to see if they’re ok that we may be told to shield for a further 12 weeks as the lockdown rules are relaxed even further, I think we’re all getting rather exasperated with the situation especially as summer approaches there needs to be some clearer guidance and some hope for us getting out safely even if it’s just for a little exercise and a bit of fresh air!

I think I’ll write to Sir Kier Starmer and Jonathan Ashworth the shadow health secretary too, the opposition is a good place for putting the pressure on with an issue like this.

Diane 🌸x

Brilliant idea Diane. I would just like to know what our expectations should be. Others might have their own questions.

I stupidly hadn't thought of writing to the opposition parties!

Yes it would be good to have a mention then we wouldn’t feel quite so neglected even if it’s just to say there’ll be news for us mid June as did Nicola Sturgeon !

I’ll also send an email to Johnson and Hancock! 👍 x

That's great. Just to save you time you have to go through bthe Gov.uk website.

My wrists are so sore from all the emails I've sent!

Thanks 🙏

Yes I bet they are, it takes time and much effort to do these things!

Look after yourself 🌸xx

Any thoughts or ideas Kevin53 ?

This post echoes my thoughts and feelings exactly!

I feel completely abandoned!

I’ll be emailing also and look forward to updates on this!

We will stand together!

happytulip
happytulip
in reply to TheJBird

Nice one Bird. I think they need reminding that we are still here! Anyone who can spread the word will really help. Personally, I've noticed alot of the community members backing off from helping since most people have had the restrictions eased. Not in all cases but some. I suppose it's because when we were all in lockdown they got to live our lifestyle for a bit, but now they can go for days out.

KayHimm
KayHimm
in reply to happytulip

Happytulip - this issue of what the future holds for the most vulnerable really is important. Though we don’t have the official “shielding” distinction in the US, we have many people whose doctors have told them not to go out.

I know my friends and family are worried - no guidelines that I know of. Quarantine is different from social distancing. And shielding is different from social distancing. This difference is going to become increasingly hard on people who have to remain in isolation if that is the case.

I will share any information I read in the US regarding the most vulnerable. What you are doing is so important to get the public health officials focused on this issue.

XK

happytulip
happytulip
in reply to KayHimm

Thank you. That would be really helpful.

I think it is going to get harder for those who are shielding or in quarentine as restrictions are eased and relaxed for others

I'm just hoping we can have one collective voice and keep focused on being United. I'm only saying this because on other sites it has become quite a political issue and has caused problems.

That comment is in no way directed at you, it's just my thoughts on the matter

It would be great to hear your experiences over in the US x

Happy tulip 🌷- I couldn’t find any information on how and when restrictions would be loosened as the US economy opens up. I did pose the question to my friend who is a retired doctor and has essentially been shielding until this past week. His understanding is that as the numbers go down, the risk decreases and high risk patients should be able to ease up on restrictions. He is going for a drive in the car for the first time today.

The policy has been more specific and detailed in the UK. So I would think those of you in the shielding category would be given clear instructions as to how to proceed. Your efforts are valuable in that you are asking for information even if it mainly helps you to understand the parameters.

One thing we discussed is how there would always be risk of infection with certain populations. As an example, even before Covid, lupus patients on high dose steroids and organ involvement would be at risk during flu season because the vaccine is never fully effective and even a minor infection can pose a problem in immunocompromised patients.

I would love to know what the health authorities are thinking about this issue right now, wouldn’t you? Do they already have targets for how low the incidence of disease has to be before they change from shield to social distancing?

You may get answers with all these people writing in.

Xk

Roarah
Roarah
in reply to KayHimm

My cardiologist, whom I had a physical visit with in early may, mentioned that every individual needs to assess how each activity fits within their level of risk comfort. In his opinion any thing outside was far safer than inside. He has been recommending outside exercise, biking, walking, and jogging in low density spaces to all his patients even high risk. As a cardiologist he feels the risk of a sedimentary life is far more dangerous than threat of limited time socially distancing outside even with possible low volume virus exposure.

He also mentioned that he thinks having a bubble of people whom are following social distancing and hygiene suggestions to keep from sinking into depression is important. My bubble is my family but he thinks single patients might consider having an outdoor meeting with a friend scheduled regularly. Masks can be used and chairs should be 6ft apart and no shared drink or food. He mention assessing how damaging no social contact is in comparison to risk of infection. Everyone's risk comfort and assessment is not going to be the same and there are great articles breaking down specific activities by their risk potentials.

If you break shielding are you breaking a law? I thought it was just a recommendation to protect some individuals who were deemed at highest risk of severe covid and legal protection from wrongful employment dismissals. I think if they are not working for you emotionally that you could discuss with your doctors other alternatives that mesh more with your personal risk vs benefit measures.

KayHimm
KayHimm
in reply to Roarah

Your cardiologist sounds like a wise man. 😍

You have put into words exactly my frustrations over the last couple of weeks. The not knowing is the hardest bit. I've seen unsubstantiated claims that one person has been told by their consultant that shielding will be extended to 11 September, and another that they will start to re-stratify the shielding group that will take into account more personal risk - "smart shielding"; in other words, some will have to carry on shielding and other won't, some may only need to self-isolate etc.

But the important thing right now is that any future announcements specifically include us so I will be writing to my MP and others to try to make this happen.

Hi Whaleroad. I think if the Dept of Health and Social care start getting more and more emails in their inbox it will help raise the matter too. So I can only encourage you to email them via the gov.uk website.

Good luck with your MP. Let us know if you get any information.

For me I always like to find a solution to a problem. I can see what you are saying about being told different things. We need fact not rumour. Rumour only causes distress and uncertainty so we need information from a reputable source and right now that is only going to come from NHS England and PHE via the DOH&SC.

Will you let us know how you get on and thanks for the reply!

HT 🌷

Precisely. To be fair, the talk of 'smart shielding' was from doctors so I'm confident that this is something that has been at least discussed as a possibility. Doesn't mean anything of course, but it is an interesting proposition.

Sounds sensible to me. Although the term smart shielding makes me think of some super duper technical device and we all know how terrible I am with the modern world! 🙈

Hi happytulip 👋 Just to say I’ve emailed Kier Starmer Leader of the opposition and Jonathan Ashworth Shadow health secretary, Boris Johnson PM and Matt Hancock Heath Secretary, The Department for Health and Social Care and my MP..... fingers crossed someone will get the message 🤞x

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