So now that the British Prime Minister (photo) is throwing ALL caution to the winds where does it leave those of us who are immunocompromised? What should we do? Do we just get on with it and pray that Paxlovid or Sotrovimab sorts us out? Can we travel again? Or will we always need to be close to home to access these anti-virals?
The UK decides to let it rip ... what about us? - CLL Support
The UK decides to let it rip ... what about us?
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Me2AsWell
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Just seen it on the evening news. Speechless. This week they haven't been providing daily case rates either despite them rising again....
Daily numbers are still available in all the detail on the government site. I'm trying not to read them but they continue to fall.
The daily numbers are deeply misleading - a growing proportion of people do not report their results ... if you want the real numbers you have to look at the Office of National Statistics weekly survey results. This week 1 in 19 people had COVID - up from 1 in 20 the week before.
They are no longer reporting the daily case rate in my state in the USA either. It might be deeply hidden in their state website, but I gave up trying to find it as it was too tiring
It is starting to happen here too. Mask mandates are being dropped left and right. It is SO premature and I really don’t understand the logic behind it.
I guess stupidity knows no borders.
PaulaSVolunteer
Good questions, Me2AsWell . I've just written a reply to another post on this subject, with suggestions for action in response to the UK government's announcement. healthunlocked.com/cllsuppo...
Paula
P.S. I love the photo! 
What shall we do
Hi Al 444,
You ask “what shall we do”.
We can write to our MPs about our predicament. I listed some things we might say, and Sumoldbloke has drafted an excellent letter that we can use or adapt in our own way. healthunlocked.com/cllsuppo...
I quote Sumoldbloke’s words:
“Letter to my MP
Safeguarding the Vulnerable
As we move towards the lifting of all compulsory measures to protect the population from COVID19, I am writing to urge you and your colleagues in Parliament to support four simple and affordable measures to safeguard those who remain at risk of serious illness from this disease. Many of us with blood cancer or other forms of immunocompromised disease are not afforded full protection through vaccination. As a consequence we have had to shield from the wider public, with all the concomitant restrictions of not being able to see friends and family, not being able to participate fully in social and cultural life, shops, cinemas, concerts events etc.
In order for this group to be able to exercise their freedoms, I am seeking your support for the the following measures
1. Lateral flow tests to remain free to all. This allows family and friends to visit with some security that they are not carrying infection.
2. Respirator masks to be made available to the Clinically Extremely Vulnerable(CEV) . For many of us mask wearing will remain part of our daily experience if we are ever to move amongst the general population. These will need to be masks for our protection from infection not simply to avoid infecting others
3. A public awareness/ public health campaign to ensure the general public understand the continuing risks to the CEV . Support for mask wearing and social distancing so that those who need to take precautions are treated with respect.
4. To make new treatments (Sotrovimab, Paxlovid etc) readily and rapidly available and to be able to be prescribed so that the vulnerable may have these medications to keep within the home in case of need. It must not be the case that this group can never leave their homes or local areas in case they find themselves too far from their local GP or clinic
These are very specific and limited proposals and well within the affordability of a wealthy nation such as the UK.
It is sometimes said that the sign of a civilised society can be judged by how it responds to the needs of its most vulnerable members. Perhaps this moment provides an opportunity to put this dictum to the test?
Thank you”
I might add a few more points to Sumoldbloke's letter, eg
1) Immuno-compromised people to have the choice to be seen by fully vaccinated NHS staff.
2) NHS frontline staff to have regular LFTs before seeing patients.
3) People testing positive for Covid should NOT be expected to go to work in places where they could infect others.
Having said all that, I’m encouraged to hear that the blood cancer charities are already communicating with various authorities, expressing concerns of the immuno-compromised and giving recommendations for change.
Sadly, whatever the government decides, CLLers will always be more vulnerable to infections and may want to adapt their lifestyles to protect themselves. People will come to their own conclusions as to how cautious they need/want to be. Not easy as situations change all the time.
Paula
I have posted my antibody test back to the nhs today. They are testing for antibodies to see if vaccinations have produced antibodies in cancer patients. I need to be prepared to be disapointed. I have had 4 jabs now.
Despite these changes I will continue to wear a mask and social distance. The covid numbers arent accurate because people arent reporting it.
We are isolated because for many people who are vaccinated covid is a nasty bug. They can take risks but we cant. I can go out for coffee to a place where they take care but if masks arent used when they are serving, I wont want someone breathing on me when they serve coffee or food in a restaurant.
We could have to pay for lateral flow tests so its worth stocking up. The chemist gave my hubby 2 boxes today.
I am going to look online and see how many people are in hospital and hope the numbers go down. I have lost all motivation. Anne uk
I hear you, Anne. Yes, most of us will continue to wear masks and social distance, whatever the rest of society is doing. It's our lives that are at stake...
I'm not going into any cafes or restaurants, and avoid shops as much as possible. (get most of my shopping online). I do meet with family and friends, but only outdoors, in parks or gardens. We've erected a pop-up gazebo in our garden, and trail heaters out there, to make it easier in this cold weather.
I do hope your latest test shows you've got some antibodies now. I've heard that after the 4th jab, many people get antibodies even if they didn't before.
Don't lose your motivation.... never give up hope...
Good suggestion of yours, to stock up on lateral flow tests, in case they start charging for them in future.
Thinking of you,
Paula
The dog has a better haircut than the PM. Nice to see he's* come prepared for the end of covid party.
*apologies for assuming the dog is male.
😆 I know we shouldn’t be political but it is so good to have a chuckle! Thank you!
I assume the above should read big dog's "come prepared for the end of covid work event"
We have to learn to live with it. I have stage 4 CLL which responded well to Obinatuzamab and Ibrutinib, I have a 4 Yr old and 2 Yr old, they need to enjoy life and I am a full time dad... I have already done 3 periods of 10 day isolation due to covid infections in the last 9 months, I don't want to put my kids through that again until a variant of concern arrives.
Absolutely. We are responsible individually. Government edicts can't work long term unless we become a totalitarian state. We interact with others all the time. They know that I have CLL and act accordingly, taking tests, avoidance if unwell, etc. Life goes on as it did before.
I get some flack about my approach to my CSV situation, but having covid 3 times and know I will get it again unless I lock my self away in a box for ever. As you say we have to take responsibility for our own health and every evaluates their own risk. Clearly if a Delta type variant appears I would the state would reintroduce restrictions again. Omicron and its mutation line could be with us for decades... so having lost many friends to Covid , pre vaccine, I feel obliged to to enjoy everyday for them. Keep safe
Steve, I can understand and respect your lifestyle decisions - so many challenges when living through a pandemic with two small children. It's very encouraging to know you’ve survived three bouts of Covid already.
It's great that you've done well, but it won't be the same for all of us. I agree that we have to “learn to live with it”, but some of us need help to do that – so we can live with it not die of it.
Dawson21 , it's great that the people you interact with understand your CLL and are supportive in practical ways. But that's not the case with all of us.
Yes, we are responsible for our own health, but there are things that could be done to help us, that would NOT affect the rest of society and their freedoms. These would cost money but might be cost-effective in the long run, as the NHS wouldn’t have to treat so many of us.
I have made some suggestions in response to BellaBee’s post yesterday. healthunlocked.com/cllsuppo... We could write to our MPs with these sorts of suggestions. Blood cancer charities may do the same, and have the authority of a recognized charity behind them.
Paula
Absolutely correct Paula!Having shielded solidly ( apart from vaccinations and a mammogram) for two years, I despair! 😩
I am at a loss as to what to say about restrictions being lifted. Sadly, not everyone understands the still strong need to avoid CEV people… and they don’t have a sign on them.
Does the government not think that we would like to see our children/ grandchildren after two years… that dream is getting even further away 🥲
Stay safe, Fran 😉
PaulaS - I read your great ideas you replied to in BellaBees’s post and copied it to my Notes. Your ideas have fueled me to write 🖊 (or type) to our local government officials who have insanely lifted the indoor mask mandates here in one of the worst covid case county (per capita) in the US.
The pandemic is crazily “over” where we live (so they say and as the weak ones refuse to respect others by not wearing masks). Yes it’s “open season”, hardly anyone is wearing masks now, yet the spread of Covid and high hospitalizations still remain. Huh?
I like your blueprint of excellent ideas and will edit in a few more. Hope your ok with me stealing (borrowing?) your fine work of ideas?
I like your approach PaulaS to the “new normal” living reality we suddenly are faced with. But that doesn’t mean we stop battling back! Now where’s my pen 🖊?
Thanks Pin57. Glad you found the ideas helpful. Please steal, borrow and edit as much as you like. That's why I wrote them here.
I realize everyone's situation is different and I'll be interested to know what other ideas you have .
Paula
Yes it seems very early to be throwing out all covid restrictions and I have to say I feel there is a whole level of society like us who are immune compromised that have been thrown to the wolves . I think the only thing we can doing I am already doing. Taking personal responsibility, not going anywhere that could jeopardise my health. Being in chemo treatment for the next year I am looking forward to spring. At least to be able to get outside more safely . I have written off cinemas, theatres, restaurants, pubs, shops etc. My family lateral flow before visiting. I have also just had the antibody test after my 3 jabs and I do have some antibodies so that’s encouraging.
Sadly no thought for the vulnerable.
Exactly. Any report like the BBC's needs to mention that it is not just us. All of our families are forced to limit their lives if they want to be with us. It affects so many more.
And my same old line. Just maintaining the mask mandate in confined spaces would make everyone safer. I agree lockdowns can't be repeated for the sanity of the nation but masks are still recommended by scientists all over the world but our PM suggests "good old British commonsense" will see us through. I see precious little of that as masks are abandoned/
One has to be that much more cautious till this blows over. Hopefully it will be over fast.
NewdawnAdministrator
This article is quite balanced on the subject.
Interesting that Scotland is extending their Covid restrictions until Sept.
Covid: Self-isolation law could be scrapped in England this month bbc.co.uk/news/uk-60319947
Newdawn
It’s quite good Newdawn, but still lots of guidance, urging, suggestions and common sense (even educated ministers couldn’t follow) I’m not convinced that the majority of people will pay attention to that 🥲. I think it’s the asymptomatic side of covid that makes it so difficult.Maybe I’ve just been indoors too long…and in the actual outside world things are much better…sadly, my views and outlook have changed so much in the last two years 🤦♀️
Stay safe,
Fran 😷
I’m actually amazed how many people I see still wearing face masks however Fran. However, the sensible people need no mandates. It’s really for those who wouldn’t (and still don’t comply) without a legal framework.They’ll be no protection now from ruthless employers who will have you in even with symptomatic Covid 🙄
Newdawn
I hope this does not come across as harsh, because it is not meant to be. I personally believe that as an immunocompromised individual, I must do what I have to do to take care of myself. I was immunocompromised before Covid and will remain that way when it is gone. I cannot expect everyone else to change their activities and habits to protect me. It is primarily my responsibility. I decide what I will and will not do. I do not go on public transportation. I do not go into crowded rooms or stores etc. I do not go where there are crowds of people. I do go to the grocery store, I do go to the drug stores, I do go clothes shopping. But not in crowded stores or at peak times. I do go into restaurants that have decently arranged seating, but would not go into a tiny restaurant or a crowded bar. I do not go into a place where I cannot realistically expect to keep a social distance. I do go to my grandson’s indoor basketball game, and sit away from others; I would NOT go to a high school or college game where I would not have a choice of seating. I did go to a family reunion last summer, but kept my distance as much as possible. I go to church services in the main sanctuary where I can pick and choose where I want to sit; but I do NOT go to my Bible study class because it is in a small room with more people that might or might not want to wear masks. I am not going to ask all of them to wear masks so that I could come. I would not go to a crowded movie theater or attend a packed playhouse. I see my kids and grandkids when I can. I ask about colds, COVID, etc before I see them. I don’t kiss them, we do “side hugs” only and they know not to get “up in Nana’s space”. I know when I need to stay away from people. I see my CLL specialist every 3 months and get IVIG infusions every 6 weeks. None of my appointments were cancelled because of COVID.
I have been doing most of the above even before COVID. (Except for masking) I live a full life. I do not expect everyone else to live like I do. I can wear a mask anytime I need or want to. I do not expect others to do so unless they want or need to.
We are all individuals and in the same way that our CLL can act differently, we too are all different. We must look out for ourselves and decide what our individual risk tolerance level is.
I remember in April of 2020, my church leaders sent out a survey asking what we thought they should do to minimize the risk of spreading COVID. I sent mine back saying that I did not want the church to take action to protect me, but to look out for the general congregation as a whole. If I felt comfortable with the solutions they decide upon I would go to church. If I didn’t I would stay home. They ultimately decided to have outdoor services where people could sit outside in lawn chairs or even in their cars.
We should all, as decent people, be sympathetic to another person’s needs. But at some point everyone is ultimately responsible for themselves.
I understand that things in the UK are quite different as your government is also your health care provider, so they have “skin in the game”. I would think that would make them more attuned to the immunocompromised since they are the ones footing the bills. But unfortunately, as in most things, “Money talks” and shut downs and even mask mandates keep people from spending as much money as they normally would. Hope and pray this thing goes away soon.
Again, hope this does not offend anyone, just the way I see things on this side of the pond. No judgments on any side of the issue!
BeckyL USA
I totally understand your position Becky and to some extent have rejoined the scary, outside world myself because I have to. However, it sounds like you and I have choices. If I was working in an environment with lots of others and/or had children coming home from school each day, it would feel a whole lot scarier to know the infected were moving freely amongst them. My son attends a centre and due to their vulnerabilities, many of the attendees are vectors of infection generally. I’m not going to stop his activities (he suffered enough for nearly 2 yrs) so we weather the risk. However, dropping all isolation requirements is a step too far for me when in the U.K. 1 person in 19 had Covid last week.
Regards,
Newdawn
Yes - this is my biggest headache - my poor 27 year-old son has dutifully sacrificed by staying at home for two years now. He really needs to get out and get a job ... but he will need to stay at home and so will bring back whatever he picks up in the big bad outside world.
I absolutely agree Becky ... except wrt masks. I do not see why it is viewed as such an imposition for people o wear mask in confined public spaces. I don't have a car so can only use public transport ... doing so with a majority of mask-less passengers is scary. So my world has shrunk back being very confined - and there seems little chance of that changing unless I can get a butt-ful of Evushield and/or pocketful of Paxlovid to carry with me.
I share your view here. Personally with covid and the shielding that disrupted my work. Long story short I have started a new role where I will do shift work, which suits for work/ life balance. Part of that means I have accepted a place in a training course and will fly from Belfast to Heathrow and spend a week in Slough (the joys). That's as big a risk as I've taken, my first flight since Sept 2019. I'm OK with it though as I reckon I'm probably getting it anyway, or my vaccine will protect me. Either way I won't avoid the exposure. I will not be mixing, may eat in the hotel, not witherspoons, and that's because I really don't want to get it and have to isolate away from home in a hotel. 5 nights in Slough is enough for anyone. 🤡
I agree completely Newdawn and I am indeed fortunate to have more leeway in what I do. Cannot imagine having CLL and kids at home that need to be out and about. My heart goes out to them!
Here in the US we have a new variant on the rise that is affecting all of the public health decision making - we call it the midterms!
We have a new variant too. It's called the BorisinTrouble
I think that our only hope now lies in the hands of fate.
Letter sent to my MP Pauline Latham
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