To anyone querying if they are high r... - British Lung Foun...

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To anyone querying if they are high risk/should isolate due to covid-19 (or are caring for someone)

Charlie_G
Charlie_G

I apologise if anyone considers this to be arrogant or in any way condescending, that’s really not my intention, but I’ve noticed quite a few posts over the last few days (somewhat understandably) from people with lung conditions or caring for people with lung conditions, asking about whether they should be isolating. To the BLF administrators, it would be really helpful if the BLF perhaps made an official, ‘sticky’ post at the top of the home page with this information, but it’s actually really quite straight forward: [Your wish is our command Charlie. This is an excellent post and deserves to be pinned so it can easily be found and read again.]

If you would normally be advised to have a seasonal flu vaccine each year as the result of being considered high risk, even if you don’t actually *choose* to have it, you are considered higher risk for complications from contacting covid-19 and fall within the government definition of vulnerable. Almost all people with chronic lung conditions fall into this category, including asthma and COPD.

The official advice for those who are in the vulnerable groups, which in addition to those aged over 70 absolutely includes anyone who is advised to routinely receive the flu jab, is currently that we should be practicing social distancing. In effect, this actually means isolating ourselves from contact with others as much as possible to avoid contracting the virus, and it’s expected that the advice will imminently change in the next few days to suggest we self-isolate at home for a number of weeks and months to protect ourselves as much as we possibly can. This means not leaving the house unless absolutely necessary, or avoiding all contact with others if you do have to go out.

As an otherwise low risk carer, the issue of whether to also self-isolate alongside the person you care for is slightly more difficult, and everyone must do what they feel appropriate for the circumstances, however advice can be obtained from a number of reliable sources, including from Carer’s UK, that amongst other things currently advocates stringent following of Public Health England advice around personal hygiene, when to isolate due to experiencing symptoms, and what to do if you’re providing informal care for someone that you don’t live with and suddenly find you can’t safely care for them as a result of the outbreak.

The current advice is to my mind somewhat unclear, as until I personally became high risk in December I was one, but informal carers are actually advised to obtain the seasonal flu vaccine to protect those they care for, and this is therefore entirely my personal view: if someone considered high risk is dependent on your care, very serious consideration needs to be given to isolating alongside them for the duration of any measures advised to protect them. Measures are coming in to place to prevent unnecessary issues with mortgages/rent, and finances generally, and it’s not always well known that anyone that is the primary carer for someone qualified as disabled under the Equality Act 2010 is entitled to the same protections occupationally as if that person was being employed in the role. This means that you are legally entitled to up to 18 weeks leave to care (or organise care) for them, albeit unpaid in many cases, but access to universal credit may well be an option for many, and I speak from experience as a full-time carer when I say it’s not perfect as a benefit, but it’s not actually that bad either, and we are in a situation where ‘needs very much must’ to protect those we care for.

I really hope this information is useful to anyone questioning whether they are considered vulnerable, or otherwise wondering what to do for the best with regards to someone they provide care for. It’s really important to realise and acknowledge that some people with underlying health problems are absolutely going to survive contracting covid-19, evidence from other countries shows it’s not actually a death sentence: preventing infection by staying in and isolating is mostly about not overwhelming the health services in one go, and we can all play our part by not going out if we are high risk, and making the right choices that protect those we care for if we wouldn’t otherwise be considered high risk. To paraphrase various posts I’ve seen from medical professionals shared here and on social media: they’re doing their part by going to work, high risk individuals need to do their part by staying home.

36 Replies
oldestnewest

Hi Charlie. Thank you for taking the time to write all that. It's something I've just been trying to find out about and that makes it pretty clear. I hope you and your little person are doing as well as can be.

We started formal, indefinite ‘isolation’ yesterday, and I only half-jokingly told my best mate that even if we survive covid-19 unscathed, I can’t necessarily guarantee we’ll survive being trapped in the house together for the duration! 👀🤦‍♂️😂

All joking aside, that’s actually why I made the post, although I did hesitate for quite a while for fear of people thinking I was preaching or whatever: the message as to who is at risk, or what that actually means in practice, doesn’t appear to be clear or being communicated clearly by mainstream sources if some of the posts are anything to go by, and I also know there are quite a few people here that are primarily present as carers, even if some of us are also high risk in our own right. From our own experiences, I think part of the problem is that the situation is developing so rapidly, and changing so very rapidly, that even expert medics are scrambling to keep up: I’m hoping for an update from Bod’s (highly expert!) tertiary team tomorrow, but as of right now, they can’t tell me what’s going to happen for review, or routine IVs, or even how we’re going to flush her port (due yesterday) given that all home visits are currently cancelled. Thankfully, her fev1 is stable in the low 70s post IVs in Feb, but she’s been consistently really wet and nasty with negative culture since prior to discharge, and I am very worried that we’re really not going to be starting from a good place overall if she catches covid-19 and it gets a proper hold. I think the issues we’re having could actually still be fungal from last autumn, so I also put that to them yesterday and framed it as ‘if she gets this, I think we could be f*^<#d right now!’ 🤷‍♂️

Hope you’re hanging in there.

Hi Charlie_G

When I told my wife that I may not be able to leave the house for 4 months she said that she would go and live with her sister. Mind you - I don't think even I could stand myself for 4 months. So maybe she has a point.

Keep well

Kevin

Yes Thanks again, it is nice to see this clearly laid out. easier than ploughing through the GOV.UK site. It is the understanding that we will be doing a lot of this, to ensure there will be beds, nurses, doctors and respirators for those that will get this, so they can survive this. On a lighter note I just wish I could magic 6 eggs out of thin air.

Thanks for that Charlie. I agree with you about carers, they need to adopt the same level of caution as the caree

Very informative post, thank you for sharing. It helps to have a calm and rational message get sent. Understandably, there is a lot of anxiety and confusion, especially given the rapidly changing situation.

Excellent post Charlie. You’re a ⭐️

Love to you and E.

Cx

It's tremendously hard being a carer even in the normal world ,been there done it seen the movie,especially so if the person you are caring for has very complicated and life threatening conditions,thankfully the little one has a man beside her with a good brain and a big heart,he just needs the back up from agencies with the same wisdom and compassion and i wish him and the little one the very best in an uncertain future.

On another note many of the posters expressing fear and uncertainty and needing guidance will have been well served by your post.

Best wishes Ski's and Scruff's x

Charlie_G
Charlie_G
in reply to skischool

Genuinely very touched with your reply, Ski’s, so thank you. Perhaps it’s the fact that I had a *very* rare, cheeky beer after posting this tonight, but I have little trouble in acknowledging that my self-worth of late has been absolutely rubbish, and I rarely feel of ‘use’ to anyone bar Bod. Even there, I’ve reached a point where any use I deem myself to have almost feels irrelevant for lack of progress.

The biggest irony in relation to your reply is that we had a half day assessment visit booked at the most amazing specialist secondary school on Monday. I ummed and ahhed massively over the weekend, and eventually took a very calculated risk for her to attend (only 4 kids in the class), and they cancelled due to covid-19 literally as we got there. It can’t be helped in the slightest, and is probably actually for the best overall, but I can’t realistically see any school reopening before September, and even if they do, we’re currently in isolation until at least mid-June at the earliest; my biggest frustration right now is that even if we get through this unscathed medically, she still doesn’t have a school place, and will now most likely miss an entire year. Completely unnecessarily. Her anxiety is already through the roof as it is thanks to the covid-19 situation, but even if this passes relatively quickly and without impact, she still doesn’t have any certainty at all almost 9 months on since our move.

On which cheerful note...! I’ve been meaning to post an update on what’s happening with her for a while, and I’ve no excuses at all now! 😉😂

Stay safe, and keeping posting - I read and routinely laugh even if I don’t comment.

Bless her,i communicate with the eldest daughter of a dear departed member and the thought of schools closing and exams not being taken after years of study and determination to succeed in great times of adversity and hardship is heartbreaking for kids.but we can only hope as a society we can make it up for them in the new future and give them the support and strength to fulfil rewarding and exciting lives. :)

alyvonne
alyvonne
in reply to skischool

Well said skischool

Damon1864
Damon1864Volunteer

Hi Charlie those are very sensible words thank you do much. Have a good day and take care of yourself 😊 Bernadette xx

Hi Charlie, very informative thank you. I’m staying home with Pete because I need to protect him and myself. I have the flu jab each year too.

Let’s all do our bit and keep well and safe.

You take care and love to your VIP. Xxx 😘

alyvonne
alyvonne
in reply to sassy59

Hi sassy, although I come into the over 70 (just)😂 I also feel we have to protect our loved one who have respiratory problems . I agree with you let do our bit. Our home is known as the bunker now. Thank you Charlie_G for information. Stay safe all xxx

sassy59
sassy59
in reply to alyvonne

You’re doing the right thing alyvonne. Take care and stay safe. Xxxx💝

Your post is remarkably helpful and inspiring Charlie. Heartfelt too. Keep us in touch with your many friends in this forum concerning you and your loved one, as you chronicle your lives for us. Riveting reading!

Thank you, succinct information

Very useful post for all. We have been bunkering (like that expression Alyvonne) for a week now. I know we are all in it for the long haul so feel for both of you. It is so hard for young people just starting out to have their hopes dashed but your daughter sounds very resilient and obviously has a strong man beside her. Very best wishes to you both x

Thank you for this post. It clarifies several things that l was unsure about in a straightforward way. Hope you're doing ok. Carrie x

Thank you Charlie...my husband and I stated isolation yesterday ,he's had 2 major heart surgeries and is diabetic ,I've COPD and asthma . My brother who is terminal with both lung and bowel cancer ,rang me to say he was in isolation ,I understood why they told him to isolate then he asked why we were still out and about given our medical issues .....that was when reality hit ,thought this virus only happened to other people surly not me , wrong ,it's people just like us who ARE getting this awful thing and dying . We've 8 beautiful grandchildren and 3 children ,our way of protecting them is to stay indoors and love them from a distance . Praying every day this awful destroyer of lives is soon under control and life may return to normal as soon as possible . Stay safe everyone . Love to each ....from a distance 😘😘😷xx

Thank you so much Charlie for posting. My eldest son is my carer and is having a problem at work. The information you have posted about careers will help him. Well done and thank you again Barbs x

Thanks for that Charlie, it's definitely sorted my mind out even though I am already self isolating. I have had my hospital (many) & dentist appointments cancelled but am still worried as I was at the hospital last week to see my liver specialist (pre cancer). I have severe, brittle asthma & already had 9 respiratory arrests & 1 cardiac so if this gets to me somehow it's a case of whatever will be . Family are to far away, Australia & Scotland but have very nice neighbours who will keep me stocked up . Sorry it's such a long post but that was better out than festering in my brain - if I still have one !!. Maybe we could try wearing yashmacs?? Sending warm wishes & gentle hugs to fellow 'steam train' breathers 😂😂

Thank you, Charlie, excellent explanation!

On the issue of whether BLF should provide further links to information, I would mention that there is a box just below your original message giving a link to "Latest NHS advice". It doesn't look much at first, but if you scroll down, there are links to Government websites - to give them their due, these are updated very rapidly.

A lot of people, especially those who still have to go out to work, agonise over how much of the advice they can comply with. By its very nature, any advice of this sort is going to be generic and I think readers have to decide how best to apply it to their particular circumstances. If they keep in mind the purpose of the advice, ie to prevent infection and transmission as far as possible, then any action they take in that regard will be a contribution.

However, the situation is different for employers, who are legally bound to assess risks in their workplace and take action to mitigate them, so far as is reasonably practicable. The new risk of COVID-19 needs to be taken into account, and I have seen statements from several companies on how they are going to deal specifically with that risk. There will be cases where social distancing by 2m is going to be impossible in certain circumstances, but anything which reduces unnecessary contact will undoubtedly contribute to reducing the spread of the virus.

Thank you for your time and effort to share your thoughts with us. Stay safe.

Hia I have a young carer who is fab one of her clients said today she not needed anymore as a family member can not go to work . She very hurt . And the lady she cared for up set . To be able to wash hair shower . Make her feel ok . I lived time Africa where the delights. Some one look after you . And in Spain. But no kids abusive hubby I worked in yes grotty Africa with most amazing people . Who lived on nothing . Life expectancy 45 years . As I said I wound not be going back anytime soon .i only have her & her mum who cleans . & house bound anyway.funny thing as I talk doc friends Africa . Actually my encounter viral phenomena mallaria May be helpful. As an immune . & even Tb . My luv and caring to all out there in difficult apparently swons on canals Venice .

As of tomorrow monday23rd we all are to be in isolation should be getting letters to this effect

Maybe we list where we live to set up groups keep contact with each other feel a little safer if you know someone is just down the road (for those living alone )

Or use this site more than normal

Facebook people are doing this to help cooked foods shopping to your door

Yes this virus is a oh shit will I die you might never catch it people with health problems have recovered you can make yourself I'll getting in a state worrying about something you might not get

Me I have always believed when your number is up

I recently (within the last 2 weeks ) visited my GP and saw an ANP (advanced Nurse Practitioner) she advised as a vulnerable individual the flu vaccine being given to me in September October was too late. We should get it in the spring so we are in advance of the autumn. So without further ado she gave me the seasonal flu jab and the one off pneumococcal vaccine.

Maybe useful for our vulnerable members to take note of.

My vulnerable categorisation stems from my Severe COPD and Asthma with other underlying complications.

Cheers Charlie_G

stay safe and stay healthy

Phil

Charlie_G
Charlie_G
in reply to Chezz123

Did you have your flu vaccine last autumn/winter, Phil? If so, this actually bothers me, because the jab you’ve just had won’t be this year’s flu vaccine, it can’t be - stocks aren’t issued anywhere until the end of August at the *absolute* earliest because the vaccine is modified every year in an effort to cover what they suspect will be the prevalent strains. They’re right, September/October is a bit late, and that’s assuming you can get it then (we struggled last year, I managed to get mine in October, but the person who actually really needed it - my 12 yo - couldn’t get it until November), but unfortunately, it has to be around then to account for how the vaccine is modified and then production and manufacture.

I had last years in the autumn Charlie and yes it is this years my GP is part of a very LARGE practice who have extraordinary access to all things weird and wonderful she showed me the phial before injecting thanks for your concerns though ...much appreciated.

Phil

Charlie_G
Charlie_G
in reply to Chezz123

Phil, I’m really sorry, and I’m really not trying to be argumentative here, but the WHO only agreed this years’ recommended vaccination strains and issued that information to vaccine manufacturers on February 28th. Regardless of the size of your GP practice, there is no physical way you could have been given a vaccine manufactured for this years’ flu season simply because they’ve literally only just gone into production and each batch of vaccine takes two weeks to manufacture. Two weeks ago, there wouldn’t have been a single batch of this years vaccine completed yet, never mind stock of it at a GP.

I don’t want to get into an argument with you, so I think we’ll ultimately have to agree to disagree, but I will apologise profusely if provided with evidence by you or anyone else that I’m wrong.

I have not been out since Monday evening when I called on my disabled son. He has plenty of food and milk for now. Then I got the message to self isolate. I am not allowed to visit my son. If I do,, according to the local policeman I will be breaking the law.

He lives alone and doesn’t have a carer, his choice. He has had the flu and pneumonia jabs. He hasn’t got a spleen and recently had a bad chest infection.

I need to go out to get bread and milk, plus food for George. I have enough to last until Saturday. I have a respiratory N95 mask and a balaclava. My neighbour has said she will get my shopping but I don’t like to bother her.

I have had the flu and pneumonia jabs. I have Emphysema and Diabetes 2.

What do you think?

Charlie_G
Charlie_G
in reply to Azure_Sky

Unless I’ve lost my mind and completely misunderstood everything, you’ve been given completely incorrect advice. The reasons I say that are:

1. Even under the new Coronavirus Act 2020, highly vulnerable people cannot currently be forced to remain at home. We’ve been told we should, and are being offered lots of support to do that, but the choice to stay in is ultimately that: a personal choice, not a legal requirement for which we can be additionally punished if we decide for any reason to do otherwise. The reason I say additionally punished, is because the new powers do allow the police and other relevant officials to issue fines to those found to be moving around without justified and permissible reasons (of which there are very few), or congregating in groups. The high risk are still being told to leave the house for medical needs if there is no other option, so if we were legally required to not leave home, there would have to be some way to track and enforce all this, and put simply, it’s pretty much unenforceable.

2. Providing essential care to someone high risk or otherwise vulnerable is currently listed as one of the few reasons people are allowed to leave home.

Taking the above into account, I categorically cannot see how you could possibly be breaking the law by caring for/supporting your son. I think the issue here is whether providing care to him given your own highly vulnerable status is sensible and the right thing to do to protect you *both* right now. If you’re going out, you’re putting yourself at risk, but also potentially putting him at risk if you did come into contact with the virus and then went to visit him. There is lots of support being provided both at a local level, via the covid 19 mutual assistance groups (often operating through Facebook), and at a national and governmental level: those that are highly vulnerable who have little or no help from others can register with the government for food packages (containing basic essentials like milk, loo roll and pasta etc.) but also for help with getting medication delivered for the duration. The link to that page is:

gov.uk/coronavirus-extremel...

I know it’s extremely difficult right now, but I would very strongly urge you to consider finding alternative sources of practical support for your son so that you can both stay safe and get through this without issue. You would never forgive yourself if anything happened to him, but he would never forgive himself either if something happened to you as a result of ignoring the advice to get his shopping.

Thank you Charlie, my neighbour has volunteered to shop and collect prescriptions. She fetched my months supply for me . I am hoping Paul’s son will help him.

Thank you Charlie_ G , I have been spending a lot of time trying to explain these things to many older vulnerable people. I am staying in because I feel it is best for me & others but my other problem is I can't walk at the moment and my op was cancelled on Friday. I of course live alone too.

Have you looked to see if there’s a local ‘mutual assistance group’ in your area? They’ve been set up purely as a means of supporting anyone who is either vulnerable in some way (older, a health problem etc.), is one of the government identified ‘extremely vulnerable’ who are being asked to shield for at least 12 weeks, or even self-isolating due to symptoms and have little or no practical support for essential tasks and shopping. A quick google including your town name should get you a result, but many of them are coordinating their services via Facebook if you already have an account. I know that doesn’t help with issues indoors and the lack of mobility must be really difficult, but it may help take some pressure off you if you’re struggling.

Take care.

The Government are having to make things up as they go now. So many dead and more dying every day. It seems self isolating has stopped a great many people catching it. With hindsight the self isolating should have begun much earlier. The Prime Minister himself has Covid-19, so has Prince Charles.

759 deaths Friday 28th March. I dread to think how many NHS workers will die due to lack of protective clothing. Children becoming orphans.

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