Op-Ed on being immunocompromised in the UK

[ShannonB]

Thought you all might like to see this, which I wrote this week to try to help share our story on living with Covid while immunocompromised

t.co/xUB4PNT7AU

[suzannah16]

I agree totally. Even if they could just get us tested to see if we have any anti bodies would help.

[Cathyan]

Great article Shannon, well argued 👏 and heartbreaking. I’m so sorry for the awful position you are in, and hope you/we are listened to.

[ShannonB in reply to Cathyan]

Thank you so much. Wishing they would listen xx

[Barnclown]

👍👏👏👏👏Great statement! Thanks for posting & all the work you’re doing🍀❤️🍀❤️

[ShannonB in reply to Barnclown]

Thank you so much x

[CecilyParsley]

Well done Shannon for writing such an honest and accurate picture.I truly hope that you get the help and support you need xxx

[ShannonB in reply to CecilyParsley]

Thank you ❤️

[Krazykat26]

Well said Shannon 🤗 A very moving account of how life is for so many of us right now. Thank you 🙏🌈😽😽xx

[ShannonB in reply to Krazykat26]

❤️❤️

[bluebell99]

Thank you for highlighting the sacrifices we have made to ensure our safety. I totally agree that lifting restrictions completely and now not even giving out free lateral flow tests will not help our situations. We are vulnerable but the powers that be seem not to have considered the immunosuppressed or compromised. Hope someone sees sense before it is too late.

[Poshcards]

If only!!.... x

[KayHimm]

Great work. You might be interested to know the US is confronting this same issue. Doctors are calling for support in terms of education concerning prevention, better access to testing, and adequate supply of anti-viral treatment.

I feel confident patients and the doctors who care for them will be heard.

Best of luck.

K

[CavendishCool]

Beautifully written. I thank you for that. I think that the thing that hurts the most is that the Government just don't care. I don't think I've ever lived through such a time where I feel that there's nowhere to go apart from Health Unlocked/Lupus. I personally would feel much better if we could be checked for antibodies rather than feeling like I'm playing Russian (apologies) Roulette every time I go somewhere. I find I talk to myself when I go out. "Well you are 62, you've had a good and long life, saw your boys grow up..." I never used to be like this. Thank you for highlighting this issue in such a profound way. Namaste 🙏 🧘‍♀️❤

[MrsMarigold]

Hi Shannon. Your Op Editorial was well written/ great success for you. For the first time since being a member of this forum I’ve gotten a very real look into British livesShielding being strangely enough “a way of life “ that was mandated by government and the people of Britain did it so well/especially the immunocompromised population. Here in the US there were mandates as well: masking, staying home mostly and avoiding huge social gatherings.

Millions worked from home too and it appears the pandemic may make this a permanent working reality. The first year of the pandemic I think a lot of people complied with the mandates because we were all so afraid of this surreal “new killer.”

My children are grown and have families of their own. My husband travels a lot for his job so to protect me he slept in the guest room for several days after each travel.

We know more about the virus now than we did before. So as the world is relaxing mandates, I believe this is right. In another post earlier this week I stated that the mask mandates here were an utter failure. Millions of Americans didn’t comply with the federal or state law. And as far as I’m aware there were no special protections or information for immunocompromised like me/us. I have to admit with huge kindness,

That your shielding from the world in your own apartment seems very “over the top.”

I do know people who didn’t see their grandkids for long periods of time and many similar situations. Most people I know though were similar to us: meet outside in back yard with food once a week and sit 6-10 feet apart. Our climate is conducive to doing this most of the year.

Anyway I’m leading up to my points: 1. I believe our governments were really good at selling fear. By the 2nd year I was going to the shops masked and hand gel etc. No church or big groups yet but definitely getting out and even traveling. Fear sells until it doesn’t and then we get these Canadian freedom truckers whom I applaud loudly for their courage to stand up and take their freedom back. Freedom is our triumph here in the USA; and to be protected for each citizen. The 2nd point is

this: we, meaning a universal “we” can not

Rely on our governments to protect us from all things; like a new mutating virus. It’s not possible or reasonable. In 2 years we watched this sickness morph into many variations which is what viruses do. And people complained constantly that the government was not doing its job. Too many arguments to discuss on that point. But I will suggest we need Government to help run the show in times like these but let

Science lead. Never in my life would I have thought that I would have the belief that government will not be able to save you most of the time. Until living through Hurricane Katrina and eye witnessing horrors because no government could possibly get here fast enough to prevent them, I changed. I live on a new frontier similar to cowboys of old : be prepared to defend yourself and your family. And leave fear buried in a box in your garden. It’s faith

That gets you through life and builds character and teaches our children that they too are able to face future “monsters.”

[KayHimm in reply to MrsMarigold]

It is important to have perspective on immunosuppression. It really is on a continuum. Lupus patients on certain medications and certain cancer patients may have dramatically reduced immunity. My cancer treatment affected my bloods modestly, and my oncologist put no restrictions on me. His other patients were given different parameters, I am sure.

It makes this issue a bit confusing because the US - without a national health system - couldn’t easily have a shielding order. Patients heard on an individual basis how they should be protecting themselves.

There are similarities right now in terms of the vulnerable people speaking out in both countries. Doctors are addressing the issue too.

xxk

[BrigidsFire in reply to MrsMarigold]

I agree and disagree lol.

I do think the lifting of mandates is right. I don’t expect the entire world to shut down because of my health issues. And lifting a mandate isn’t saying “do what you want”, it’s saying “it’s not a legal formality, but use common sense”.

However, I do expect that the average person has the decency to stay at home if they’re ill, or to wear a mask if they must leave the house. That’s just being considerate of other people.

Faith won’t get you through a deadly illness, science will. As will personal responsibility. Faith is wonderful, but science made vaccines that we all have the responsibility to take when offered, not just for ourselves but for those around us. Being prepared to defend yourself and your family means getting vaccinated and making real time self assessments on health and safety issues. Common sense.

I’m immunocompromised. I choose where to go and when. If I go to a pub that’s my decision and I don’t expect anyone to take extra precautions because I don’t *need* to be there. However, if I go to a supermarket I expect to see most people still wearing a mask, because I may have no choice on where I buy my food, and that’s an essential trip out of the house.

I do agree that all governments in all countries have faced tough decisions based on nothing they’ve seen before. It doesn’t matter how most governments have dealt with this, most of them (bat a few) have done what they see as the best option for their country. And that includes trying to get back to normality and keep the economy running. Let’s face it, in the UK, if the economy collapses then we have no NHS. Where would that leave us? I can’t afford to pay for my meds any other way than a prepaid prescription. I’m currently on 5 scripts a month. If I had to pay for them all individually at the actual cost I’d die.

The majority of the population are going to be ok when the mandates are lifted. Let them live their lives and contribute to the economy, in return for us having the NHS.

[MrsMarigold in reply to BrigidsFire]

Hi BrigidsFire. This will be short as I’m symptomatic right now with brain fog descending. Thx for your description of what it is like to live in a country where the medical community is directly attached to the government. I will keep this in mind now as I read/comment on posts. In a perfect world, a world fifty years ago perhaps, people had more common sense and less narcissism. Taking care of your neighbor and wearing A mask at the grocery was probably not

A big deal people thought about much. It was considered doing your part. My grandparents are no longer alive but several relatives in their late 80s and early 90s are. They talk sometimes of WWll and most stories regal how people just pitched in, helped neighbors, communities; made sacrifices for their country; sacrifices for “the common good.” A lot of what got people through

Then was their faith. This is not the place to debate faith/science/common sense / personal responsibility but I do believe that they are like a compounded mixture from a local pharmacy: specially made because it works. Last, surviving hurricane Katrina and subsequent storms were made bearable by local faith based organizations or even faith based organizations from across the entire country. Wow. To experience it was life changing. Again, really appreciate your information on how intricately NHS and government are connected. Best Regards, Titters

[BrigidsFire in reply to MrsMarigold]

I agree that faith is terribly important.

Yes, the NHS is intricately connected to the government, because the government, i.e. our taxes, pay for it. The big mistake people make in this country is to say the NHS is free, it's not. It's free at point of use, but we all pay for it in taxes and National Insurance contributions. If we as a society didn't contribute taxes and NI, we wouldn't have an NHS, it's really that simple. That's why the government takes in to account, not only the risk to life, but the risk to the economy, when they make decisions about covid. The science isn't just that we have an amazing vaccination programme, and antivirals available very quickly for the most vulnerable. It's about whether or not we can continue to pay for these things. And that means keeping the economy open and allowing the non-vulnerable to "just get on with it", to put it bluntly. As they should be allowed to.

It's such a difficult situation for any government, to assess welfare and economy, and to find the balance between the two. It's not a job I'd want!

[KayHimm in reply to BrigidsFire]

Well put - with a national health service your government is inter-connected at a deep level. In the US there isn’t the same connection but our policies seem pretty much in sync. We are opening up but medical experts and patients are sending the message that we have to take extra measures to protect the immunocompromised.

These decisions are very hard.

[Treetop33 in reply to BrigidsFire]

I think I largely agree with you, and I'm sure the OP does too. We're not asking the world to shut down. But wearing a mask, getting decent Covid treatments in place, isolating when you have it, and hygiene (yes I know Covid is not really on surfaces, but it was nice everything was cleaned - who wants to put their hand on other people's snot?). Oh and put basic measures in school too, and roll out vaccinations quicker there. Not much to ask, is it? And yet there are people still warbling on about their freedom.

[KayHimm in reply to BrigidsFire]

BrigidsFire -

You make a lot of good points. One thing I am hearing now from US doctors - articles on mask-wearing nearly every day - is the importance of knowing not only your risk but the risk of others when in certain settings. It certainly would be hard to protect anyone in a pub. But they are still recommending masking and testing when in contact with the elderly or immunocompromised. All of the articles stress the need for doing our part in protecting others.

One infectious disease doctor made the point that if you can’t be convinced to be concerned about others, do it for yourself - wear a mask to protect the immunosuppressed people because they will be more likely to harbor variants.

Yes, totally inconsiderate to be out when ill.

I am taking heed after listening to the experts and will wear a mask indoors in high risk settings when not mandated in order to protect others.

xxk

[ShannonB in reply to BrigidsFire]

Thank you for sharing your thoughts and I largely agree with you - and I still feel they should also be paying for treatments that would protect us like a vaccine does the majority of the population when they are available and distributed in other countries.

[ShannonB in reply to MrsMarigold]

Thank you for sharing. I am British and have lived in the UK for 20 years but I’m also American as I was born there and all of my siblings and Mom are still over with you. I also work with a global team and it’s really fascinating to see how different countries have responded (and continue to respond) in the pandemic. I am not sure anyone has gotten it “right” and I’m sure there is a large cultural element to every response.

One thing I do also know though is that 16 countries have approved Evusheld, including the US, and that would allow me to move home. I know it’s in short supply and may not continue to work with future variants but I’ve watched them US and France offer it to people in our position for months and have had friends who practice medicine in the US say they have it available and are prescribing it to their patients. Our govt hasn’t even ordered it and I think that’s really not right.

Wishing you safety and happiness - x

[Treetop33]

Thanks for getting it out there. The problem with us as a group is that we are made more powerless by our need to be careful. We cannot join together and protest. We rarely have the time to write letters and articles. We are invisible, and a minority. The world wants to forget. I may join you in writing something soon. x

[ShannonB in reply to Treetop33]

I hope you do! Please!! I think you’re right it’s harder that we have limited ways to tell our story but you are a great writer.

[MrsMarigold in reply to ShannonB]

Thx Shannon for such great info and the work you are doing. I’m in a minefield of Dr appointments this week and I will ask about antibody meds for immunocompromised and let you know responses I get. In my world here in Louisiana I’m not hearing anything about it. A news report a few weeks ago reported US is in very short supply. 🤷‍♀️🤷‍♀️