Protection of blood cancer patients in the U.K... - CLL Support

CLL Support

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Protection of blood cancer patients in the U.K. charity Blood Cancer U.K. also respond

Jm954 profile image
Jm954Administrator

Blood Cancer U.K. have issued the following statement:

“ We’re delighted to hear Sajid Javid today give his assurance in Parliament that the NHS will inform and advise people with blood cancer about what they can do to protect themselves”

We’re pleased he has now committed to them being informed. Once this happens, people with blood cancer will be able to make their own informed decisions about what they do to keep safe.

“Last week, our survey of people with blood cancer showed that 80% hadn’t been told their compromised immune systems meant the vaccines may not have worked for them”

“We’re committed to working with UK government and the NHS on this, and look forward to hearing more details. With the rising infection, there’s an urgent need for this to happen as quickly as possible. Until it does, lives are being put at risk unnecessarily”

bloodcancer.org.uk/news/we-...

bloodcancer.org.uk/news/why...

Jackie

75 Replies

Thanks again Jackie. Just feel let down at present by no masks at least!!Also feeling a bit down about it to. Unusual for me.

Tomorrow's another day.

Sue

fapumpkin profile image
fapumpkin in reply to wroxham-gb

From today’s the guardian “But it is not only older people who are scared and angry. Eve, who is 34 and unable to work because of disabilities, said the relaxation of the rules will “mean I’m rendered housebound by those who choose not to wear masks”.

“The so-called freedom day is, for us, the exact opposite,” she said. “Shame on those who made this decision and those who choose, going forward, not to wear a mask. You are part of why I will not be able to go outside, just as I was starting to enjoy a bit of actual freedom again – which, for me, has been that I now sometimes go into a shop. That’s all I’ve had. And now it is being taken away. I feel hopeless.””

Well said. I feel the same.

mbear profile image
mbear in reply to fapumpkin

Couldn't agree more the government has failed us miserably, they have swept us under the carpet. At no time when levels of efficacy to vaccines were being announced was there any mention of the poor response that people with blood cancers have. It's herd immunity lifting all restrictions, but then it is believed he has said in the past 'let the bodies pile up in the street's. We are of no consequence. Angry and feelings of despair.

Shooey profile image
Shooey in reply to wroxham-gb

As reported in the i this morning, it’s all about the economy now and to hell with the consequences. Apparently it’s been ‘modelled’ that the events and hospitality industry will lose 4 billion if mask rules remain in place. The spending power of those of us who cautiously visited shops but now won’t do so doesn’t seem to have been considered. I know we don’t do politics on here but I wonder (hope) if there may possibly be yet another u turn somewhere down the line, or at least a compromise. I see that some shops intend to continue with the current mask rules, I just hope that this will include some of the major retailers.Agree with you Sue, it’s all quite depressing and hard at the moment to find any positives ☹️

wroxham-gb profile image
wroxham-gb in reply to Shooey

I'm hoping maybe a u turn. There is a lot of bad press about as well as Jubilation in some quarters. It's such a easy thing to do isent it. WEAR A MASK.Feeling more militant this morning.

I'm not going to change any how. They seem to know we cannot. Also going to enforce the 6' rule.

Thanks for your reply and stay safe.

Sue😏

mrsjsmith profile image
mrsjsmith in reply to wroxham-gb

Sue I read that the London mayor may continue to insist on masks on the Underground which seems sensible. Previous tests showed that the Victoria line is the ‘ dirtiest ‘ mode of transport in London, and the only one that stays underground.

Colette x

wroxham-gb profile image
wroxham-gb in reply to mrsjsmith

Makes sense Colette. Stay safe.Sue

mrsjsmith profile image
mrsjsmith in reply to wroxham-gb

Thanks Sue,

I am trying

Colette x

Hurrah! I always said he was a good man! (No, I didn’t, but a girl can change her mind.)

Shooey profile image
Shooey in reply to mrsjsmith

Oh I do hope he does, maybe others might follow his lead. I traveled to London from Suffolk by train a few weeks ago, not at all fearful due to the current mask policy. What I hadn’t factored in was that the cafe bar was open which of course meant those partaking of refreshments had to take their masks off!

Also on the onward bit to Hammersmith I changed carriages 4 times due to non maskers but at least the majority were complying.

Took an Uber for the return trip, far less stressful!

Guess my next trip down will be by car

mrsjsmith profile image
mrsjsmith in reply to Shooey

Yes I think that might be safer, or Uber from mainline station to avoid parking problems. I haven’t been on a mainline train for some time but a friend tells me she ignores the dirty looks and keeps her bag firmly on the seat next to her.Good luck with your next visit.

Colette

Shooey profile image
Shooey in reply to mrsjsmith

Thankfully no parking issues this end, no Uber here , weekly bus to the metropolis of Bury St Edmunds is as good as it gets! Must admit I use the bag on the seat trick, the other trick is to start talking to yourself in a fairly loud voice, who wants to sit next to a gibbering old bat? Always works unless they've got earphones in.

mrsjsmith profile image
mrsjsmith in reply to Shooey

Perfect ! I would give you a wide berth in case you then wanted to talk to me.Nic now you know what to do !

Colette x

BluMts profile image
BluMts in reply to Shooey

Do you really do that? I laughed on reading. Going to try it.

Shooey profile image
Shooey in reply to BluMts

Yep, one of the very few benefits of ageing, you can get away with it!I do have a couple more tried and tested methods but I would probably elicit a few disapproving frowns if I mentioned them.

If you disappear from here for a while we’ll know you tried it and got arrested

BluMts profile image
BluMts in reply to Shooey

😄. Tell me theother things you try.

Shooey profile image
Shooey in reply to BluMts

i’ll be banned!

BellaBee10 profile image
BellaBee10 in reply to mrsjsmith

I'm so pleased he's said that. I need to commute into London for work. X

I have a ‘1’ rule in my house, 😄

Haha you must be younger.😉Stay safe.

Sue

Yes, I am a 63 year-old ‘Babe’! 😄 You stay safe, too. x

Mijoed profile image
Mijoed in reply to Shooey

It would be nice if they at least kept masks on public transport. Transport companies won’t lose it if masks are compulsory and that has to be one of the worst places to try and socially distance. Shopping, on the other hand, can be managed by picking less busy times. I don’t see myself about to head off to pubs or clubs in the future.

Shooey profile image
Shooey in reply to Mijoed

Agree, here’s hoping they come under sufficient pressure to bring about a u turn on the masks. I expect lots of us have been busy today sending the extremely well written letter kindly provided by CLL Society to our MP, Appreciate what you’re saying re: shops but I think we also have to consider the retail workers and their safety.

Unfortunately I think my disco dancing days are behind me, restricted to the kitchen now when I have the house to myself! I do/did enjoy the occasional pub meal which is fine when the English weather lets us eat outside but I guess that will be short lived.

The last winter was extremely difficult for most of us for lots of reasons and I guess I naively thought that we wouldn’t have a repeat this year but unless someone gets a handle on this we probably will.

Hello Susiepoo. I don't think you're alone about feeling a bit down about it. I felt the same yesterday. Xx

Like minds niccynoodle. Feel like protesting but what?

Stay safe.

Suexx

I chased a rude and shouty bin lorry driver up the street in my slippers yesterday and gave him what for. Don't ask me. Xx

I can picture it now.😂😂😂Oh!Nic. What am I going to do with you.

Ps Can't write what I'd like to on here.

Suex

What was he doing in your slippers??

(Sorry. Had to!) 😂

This is a change of government strategy, in that they want everyone in the UK to get covid so we get to herd immunity, like Sweden, as Doctor Campbell explains in today video

youtube.com/watch?v=mLwn3CM...

Belfastbees profile image
Belfastbees in reply to zaax

Dr Campbell is an excellent source and he did touch on those whose immunity would be questionable due to conditions or medications specifically mentioning leukaemia. I would like to see the figures broken down among hospital admissions, of this number who are double vaccinated is there, and what might it be, an explanation of why, what vulnerability. I'm in NI so it's likely Mr Javids advice won't extend here. Our local politicians have yet to decide what easements there will be and it is likely to become politicised.

wroxham-gb profile image
wroxham-gb in reply to zaax

Thanks Zax.Sue

Fran57 profile image
Fran57 in reply to zaax

Thank you for that.I could listen to Dr. Campbell all day…although the content was alarming, if not completely realistic!

Stay safe,

Fran 😉

Thank you Jackie. It is good these matters are being discussed. I feel the least the giver Ivan do for the immunocompromised if we are not to receive monoclonal antibodies as prophylactics is to provide us with free secure masks like N95. Is this something that can be suggested and discussed.Ann

Jm954 profile image
Jm954Administrator in reply to annmcgowan

It's not quite that simple Ann in so far as these masks have to be fitted for each individual. This is from the Mayo clinic website"An N95 mask is a type of respirator. It offers more protection than a medical mask does because it filters out both large and small particles when the wearer inhales.

Because N95 masks have been in short supply, the CDC has said they should be reserved for health care providers. Health care providers must be trained and pass a fit test before using an N95 mask. Like surgical masks, N95 masks are intended to be disposable. However, researchers are testing ways to disinfect and reuse them.

Some N95 masks, and even some cloth masks, have valves that make them easier to breathe through. Unfortunately, these masks don't filter the air the wearer breathes out. For this reason, they've been banned in some places."

annmcgowan profile image
annmcgowan in reply to Jm954

Thank you for your reply Jackie. Are there any other masks we could be issued that would help?Ann

Jm954 profile image
Jm954Administrator in reply to annmcgowan

nothing that is simple that I'm aware of Ann :(

annmcgowan profile image
annmcgowan in reply to Jm954

Cheers Jackie. Take care. Ann

Predictive text error Jackie. I meant government.Ann

r.ippl.es/facemasks/If you are not happy re removal of the requirement to wear facemasks, you could, if you wish, sign this petition.

Doubt it will have any effect, we can but try...

PaulaS profile image
PaulaSVolunteer in reply to AutumnJ

Sorry, link doesn't work, AutumnJ

Paula

AutumnJ profile image
AutumnJ in reply to PaulaS

r.ippl.es/facemasks/Sorry for my fat fingers 😅 Hope this works

PaulaS profile image
PaulaSVolunteer in reply to AutumnJ

Thanks AutumnJ, but that link doesn't work either. The following does work though. r.ippl.es/facemasks/

Paula

Fran57 profile image
Fran57 in reply to PaulaS

Thank you…petition signed and forwarded!Stay safe,

Fran 😉

I live in the USA and feel badly for all you in the UK who are now in the position of being forced to live amongst the mask-less and potentially unvaccinated.

In the US, this has been happening about a month - and personally I feel as if we (the immune compromised) are being subjected to another lockdown. We have NO mask regulations - indoors or out. It is crazy. We've been told that the unvaccinated are on the "honor system"! What a joke!

I (stupidly) went to a paint store the other day (will never do it again) and had to deal with mask-less, non-socially distancing people - either patrons or working at the store. People are walking about and you really don't know who is vaccinated and who is just taking advantage of the relaxed rules. What a panic attack! I went home, dumped my clothes and took a hot shower! I will never do it again.

My only consolation is that I live in an area that has over 70% vaccinated people. Some of these areas do exist - but not everywhere. Actually not common at all. But people travel all over - so the people working in the store may not live in the highly vaccinated areas. And I DO NOT believe this will help us to herd immunity. All it seems to have done is make people more and more complacent - as if their fears are calmed by our government's indiscretions.

I really feel that these moves by our governments is political in nature. Sorry, but I can't avoid that word. I will not discuss the politics or motivations, however. I almost feel that the people who make these decisions really don't care enough to want to protect those who need protecting - the immune compromised and elderly. I shows a really bad attitude toward these populations - as if we are a disposable element in their agendas.

Feel comforted at least in that you (in the UK) are to receive boosters in the fall. We have hear no such announcements. I know that is limited comfort, but what can we all do? The Delta variant is taking over the US and will soon be as prevalent as in countries such as yours. Why can't our leaders pay attention to the science? To give others a summer holiday at the beach?

Sorry, it made me angry when it happened here. When I see the UK unmasking - it makes me angry all over again.

Jm954 profile image
Jm954Administrator in reply to Jonquiljo

The government feels that the high level of vaccination of adults will prevent severe illness for the majority and that is true. Unfortunately for us, the delta variant is causing a massive increase in infections amongst younger peoples especially and we are vulnerable even though herd immunity is increasing :(

Jonquiljo profile image
Jonquiljo in reply to Jm954

That’s kind of what the thought is here. The problem is that we are lagging on adult vaccinations. Many people say that “other” people can contribute to herd immunity. As a result- we are running out of arguments to get people vaccinated.

Where I live may be 70% vaccinated, but there are many places that are 30+% vaccinated. Delta is ramping up really quickly here and people are just obsessed with their “freedoms” - rather than think about the ALL of the people. As a result, I don’t think we will ever reach anything close to herd immunity.

I really think that if governments made some kind of “emergency declaration “ that people may come to their senses. The Delta variant will cause illness (though generally milder) in 40% of RNA vaccinated people. It doesn’t take much to see how we are a couple of mutations away from an even worse variant.

And yes, more younger People are getting sick - and that lots of them still feel they are invincible.

lindalou5 profile image
lindalou5 in reply to Jonquiljo

Thank you for writing about this subject..I wondered why I have been having severe anxiety and panic attacks so much lately. When me and my father were in a car accident, the guy that hit our car-hungover guy who fell asleep while driving. He told some people that he didn't feel bad because 'the only person in the car that was hurt bad was an old man who had leukemia'. Seems that is what our countries are saying to us and the little ones who have not been vaccinated either. Too bad for us. And who cares. BTW, my father died six months after that. There are just too many people who are senseless, unfeeling, and selfish.

PaulaS profile image
PaulaSVolunteer in reply to lindalou5

Lindalou, I am so sorry to hear this. That man's words after the accident were absolutely appalling!

My condolences on the loss of your father...

Hoping you find some peace these days, in spite of all that's happening.

Paula

lindalou5 profile image
lindalou5 in reply to PaulaS

Thank you so much for your kind words. That accident was years ago, but I have never forgotten those words of his. It seems that the world in general has become less compassionate and I would love to see more humanity in dealing with each other. As much as family and friends seem to care about our plight dealing with the Covid issues and CLL it is so very hard to be happy and care-free when we are still in a virtual prison.

PaulaS profile image
PaulaSVolunteer in reply to lindalou5

I hear you, Lindalou... I know how much cruel words can stick in our minds and are hard to forget.

I hope you will find some ways of dealing with the anxiety of these difficult times, and have some happy and carefree moments in spite of Covid and CLL.

Hubby and I get a great sense of freedom when walking out in the countryside, choosing times and places where it's not busy. Evening walks these summer evenings have been very special. I realise that's not practical for everyone though.

Thinking of you,

Paula x

Jm954 profile image
Jm954Administrator in reply to lindalou5

I'm so sorry to hear what happened to your father and that memory of what that horrid man said must be very painful for you :( :(

Atds profile image
Atds in reply to Jonquiljo

In addition, the US is only counting hospitalizations - the community spread isn’t being reported so everyone around us, even the vaccinated, could be a carrier. I’m wearing a well-fitting KN95 and hoping for the best.

Thank you for this post, Jackie, and to Autumn1 and Paula for the petition link, which I’ve signed and shared.

yes the blood cancer charities are starting to lobby for the vulnerable who do not get much publicity at the moment. Gemma from Blood Cancer UK spoke on Radio 4 earlier this week. CLL Support supported an article published yesterday on the Times on line by Sean O'Neill who has CLL. We do need to get back to ;normal', whatever that may be, but until a proven COVID vaccine id trialled and validated we must still be very cautious and protect ourselves. We will shortly send an email to all members advising them of this.

In the context of the overall situation we are facing I can't say I feel "delight" or even "pleasure" at the prospect of being given more info by the Government, although the info may be of some use. The reaction of Blood Cancer UK seems to me somewhat over-enthusiastic. Antony

Blood Cancer UK are trying to reach people who don’t know about us and what we’re facing. You’re probably seeing most of what BCUK are doing, and probably fed-up with seeing the same message, again and again, but they need to cover as many platforms as they can, and spread their net wide, to catch as many people as possible. Those individuals may only see the message once. Personally, I’m very happy with what BCUK and their partners are doing. It’s working.

Me too.

Many thanks, but my comment, which was only addressing certain features of the wording of the Statement issued by Blood Cancer UK,, shouldn't be taken as implying any general dissatisfaction on my part with Blood Cancer UK. Antony

Good to know. Thanks. 👍

I shall still be wearing my mask when out and about. I am also worried that with the relaxing of restrictions that hand sanitizer and disinfectant in shops and supermarkets will also disappear leaving us doubly vulnerable.

“ We’re delighted to hear Sajid Javid today give his assurance in Parliament that the NHS will inform and advise people with blood cancer about what they can do to protect themselves”

This comment doesn’t exactly fill me with confidence and it’s probable that we’ll just be told what we already suspect.

I’ve made my order for FFP3 masks for when I have no choice but to use public transport and, for the rest, it’ll be shielding "lite" where I will go shopping etc but only at quieter times.

“Shielding-lite”! 😂 Love it!

I think you’re right that those of us who take care to keep abreast of our cancer will not be hearing much we don’t already know. There are a lot, though, who don’t follow forums and social media, and only know what their doctors tell them. Sadly, not always enough to protect us even now, let alone with what’s charging towards us. The guidance that’s coming may well save some lives. Fingers crossed.

Well that's one undertaking undertaken, but informing those still at risk they are still at risk is the very least the government and NHS can do. There are several other things on my wish list for the next phase, which is clearly aimed at driving the herd towards immunity and tough luck if anyone gets trampled in the process.

Thanks for posting.

That's good to know.

Though I'd love to see the questionnaire given to blood cancer patients that resulted in 80% saying they did not know ( sorry " hadn't been told ") that their compromised immune system meant they might not respond to the covid vaccine.

It's just occurred to me that neither my consultant or anyone in my treatment hospital has told me this. Far from feeling they'd neglected to carry out a duty, I'd have been taken aback if they had.

Perhaps the questionnaire, if it really wanted to know whether patients were properly informed, should have asked whether patients had been told at diagnosis that they had compromised immune systems that might not react positively to vaccines and might not fight off virus infections as well as other people do, so that they needed to take more care .. but enjoy life. That's what happened to me in the NHS hospital where I was first diagnosed. I think that medics at all levels really tread a difficult path between frightening patients and giving them useful warnings and I'm not sure I like the wording of the question you quote

Are you talking about Blood Cancer UK and the question they posed in their survey?

Yes, I am. I don't know anything about any of the charities but respect them for the work I've learnt they do. Just wanted to comment that I thought the quoted question that I have read of , could have resulted in replies that are not indicative of the knowledge Leukemia patients have of their immune situation. I find it hard to believe 80% of us are so unaware and an explanation might be the way the question was put.

I took part in this survey, and I recall that at least part of it was an open question, like ‘where did you learn about potential reduced response to vaccinations’? (Or words to that effect.) I said it was in the HU/CLLSA forum, months ago, when our American friends were reporting their antibody test results. I don’t recall, but if the survey also had a closed question asking first if I’d been advised by the NHS, my answer would have been ‘no’. So, although I wasn’t told hy the NHS, I already knew about it. In which case, the 80% figure could he accurate, but misleading.

Having said that, if you spend any time on other blood cancer groups, you may be surprised hy the number of people commenting who clearly are not aware, up to this day. This is not surprising if you factor in that they don’t have the benefit of global membership, and there has been a significant time lag between American reports of test results, and British.

Aussieneil shared that our group has about 18,000 members, but the nearest similar group is at least half our size.

At the end of the day, people have died because they didn’t know they should have continued to protect themselves. Like yourself, I was told at diagnosis about being immunity compromised, but that was seven years ago. I hadn’t connected the dots. I doubt I’m alone with that.

If the survey was a tool to get attention, part of a PR campaign, it worked to hreak the silence and raise awareness with less well-informed people, both CLL patients and the general public.

Thank God.

Thanks and Point taken. Liked your cool and detailed explanation.

I’m glad. 😊 Thank you. x

Thanks for posting that Jackie. Good to know that our existence has now been notified to Sajid.

The government's new policy is that we should make our own decisions on mask wearing. I went out shopping in town today, and I reckon that even within the stores at least 40% of customers were not wearing masks. Quite frankly the masks that most people wear would make negligible difference to your chances of infection, even if worn correctly, which they generally aren't.

2 weeks ago there was a news article on the BBC and various other news outlets (

bbc.co.uk/news/health-57636360 ) about a Cambridge study which found that when they changed the face masks issued to medical staff working in "Red" (Covid infected) ICUs from the standard flimsy surgical masks to N99 (FFP3 in Europe) masks, the infection rate amongst the staff dropped and was no higher than staff working in the "Green" (Covid-free) ICU's. Staff who were infected, were probably infected outside of the ICU through normal social interactions when not wearing the N99 masks. The implication being that the N99 masks provide nearly 100% protection against catching Covid-19.

On hearing this I rushed online and ordered up a supply of these masks. They are readily available (at least in the UK) through a wide range of suppliers. I have seen some posts which suggest that we should not be buying N95 masks because thee is a shortage of supply in the health services. There is no shortage of supply!

The day after I received the new masks I had my appointment with my haemotologist. I waited 40 minutes in a stuffy, poorly ventilated waiting room, full of mainly immuno-compromised patients. Everybody was wearing standard issue surgical masks which offer virtually zero protection, including the consultant. I was very, very grateful to be wearing an N99 mask.

The absence of N99 masks in NHS hospitals, even in highly immuno-compromised situations, is, I think, due to a combination of ignorance and lack of funding in the NHS. Even my haemotologist load me not to worry too much, no need to shield, just be a bit careful but don't let it dominate your life!! - How can it not!!!

In theory, and if properly fitted, the N99 masks can filter out 99% of aerosol doplets & particles >3micron size, compared with the N95 masks, which theoretically filter out only 95%. That makes the N99 masks 5x better than the N95 masks (i.e. they only let in 1% instead of 5% of particles). When you consider that catching Covid and the severity of the disease is strongly related to viral load for any given individual, that is a hugely significant difference.

So I have now reached an acceptance that we can't expect everybody else to inconvenience their lives for the sake of a few hundred thousand severely immuno-compromised people. We have to protect ourselves. And we can improve this significantly if we supply ourselves with the very best masks that there are, which appear to be the N99s (FFP3s).

I think it is wrong to refrain from buying N99 (or N95) because there is a perceived shortage in the health system (which some people have suggested). If the masks are available online, then they should be available to the health services. If the health services can't get their act together to supply their own staff, then we must act ourselves to insure that we, who are the most vulnerable category of all, get the best protection we can find.

I can tell you that walking around town with a well fitting N99 gives me a tremendous sense of empowerment.

So far the government has given out zero advice to the immuno-compromised on which masks to wear.

Just one final comment on the N99s; you may need to shop around and find the right fit for you. The ones I have seem to fit me perfectly , but are too big for my wife. So don't bulk buy until you've found the one that works for you.

Good luck...!!

George

BluMts profile image
BluMts in reply to Everest8848

All you've said is good. I've had exactly the same experience of sitting waiting in my hospital waiting room for ages in my N95 respirator, trying to breath easily, while staff and patients wear these flimsy blue surgical masks that have loose straps that loop around flexible ears. However, they are so comfortable and EASY to breath through, because they are not doing much filtering. But they limit droplets spraying out if people sneeze or cough, I guess.

PaulaS profile image
PaulaSVolunteer

"My choice is to continue to protect you - what will your choice be for me ?"

This was put on Facebook by a friend of ours, who works in cancer research at the local university.

Full respect for her! She's an active young mother with no health problems (that I know of.)

Paula

Newdawn profile image
NewdawnAdministrator in reply to PaulaS

Very well said Paula. Good for her! 😊

Newdawn

Please tell her ‘thank you’. 😘

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