Discover and read the best of Twitter Threads about #forgotten500k
Most recents (24)
.@patcullen9
1/ Pat, I appreciate you’re busy, but as one of the patients you care about, I wanted to point something out that will have robbed your nurses of the sympathy & support of millions in the UK.
Many of your members are making a mockery of your protestations that👇
1/ Pat, I appreciate you’re busy, but as one of the patients you care about, I wanted to point something out that will have robbed your nurses of the sympathy & support of millions in the UK.
Many of your members are making a mockery of your protestations that👇
2/ you care about patient safety. Not talking about the strikes, but about most nurses (and doctors) opting out of masking in their every day duties to protect CEVs who are highly susceptible to Covid.
There are 1.2 million of us in the UK, and the last figure I saw for 👇
There are 1.2 million of us in the UK, and the last figure I saw for 👇
3/ Long Covid sufferers was 1.9 million. But that was a couple of weeks ago. Have you seen the WHO statement last week that global stats are likely to be “hundreds of millions”? So, anyway, the 3+ million of highly covid vulnerable in the UK doesn’t include the millions of👇
TW: my thread here talks about #Cancer #chemotherapy #Grief #Loss #COVID19 #forgotten500k #ClinicallyVulnerable if any of these topics are painful for you, this might not be a helpful thread to read. 🙏🏼 please sign this petition asking for #MasksInHealthcare
🧵 1/
Two years ago my mum died in hospital from v rare #chemo complications Bcs of covid rules we hadn’t been able to see her during her 3 wk hospital stay apart from briefly in her last 48 hrs on compassionate grounds. We had just come out of the horrific winter20/1 wave
Two years ago my mum died in hospital from v rare #chemo complications Bcs of covid rules we hadn’t been able to see her during her 3 wk hospital stay apart from briefly in her last 48 hrs on compassionate grounds. We had just come out of the horrific winter20/1 wave
2/Of course I wanted to see my mum prior to that though initially the gravity of her symptoms weren’t known. I WANTED her to be on a ward with restricted visits & mask mandates bcs I appreciated she & other patients on the oncology ward were very vulnerable…
So, exasperated with the total lack of mitigations against a pandemic, I settled in to write one of my verbose threads...then realised I'd done it already and the situation hasn't really changed much...aside from getting worse!
We STILL have next to no
We STILL have next to no
investment into the future of clean air, no public awareness of viral prevalence (SARS-CoV2, and its' mates), little ability to act altruistically because testing has evaporated and supported isolation remains a figment of most people's imagination...there's nothing safeguarding
our workplaces, schools, universities, public transport, shops or other public spaces, no masks, mis/dis-information is rife and anti-vax narratives now echo round the house of commons thanks to certain feckless mockeries of public representatives...
Most people think the COVID
Most people think the COVID
Well, bang goes another...but, at least vulnerable people in the US and other countries benefitted from months of protection, approaching normality...the UK was still trying to find its conviction...cilgivimab worked vs BA.5.
The good news is that FDA are demanding stockpiles
The good news is that FDA are demanding stockpiles
are retained to counter further evolution, wise move.
I've obv not seen the data, but I'm assured by a trusted source that current variants really do escape this...other long-lasting m'abs exist tho...just saying!
AZ has another Evusheld like med in the pipeline, and I hope there
I've obv not seen the data, but I'm assured by a trusted source that current variants really do escape this...other long-lasting m'abs exist tho...just saying!
AZ has another Evusheld like med in the pipeline, and I hope there
are others being developed. Prevention is ALWAYS better than cure. Small molecule drugs require rapid intense therapy to clear virus. You could argue that folks with Evusheld have a similar scenario to most of the population, loads of Abs, never enough n'abs...😔...abs don't
1/x 🧵This Friday at 10:30am, we're excited to announce the reboot of the #forgotten500K campaign with an update from the podcasts hosted by @claremenglish, @MarkOak04974342, @NikolaBrigden. Here's the message for 2023 in advance. RT. 👇 
2/x "The #forgotten500K are a group of immunocompromised patients who have not been prioritized during the pandemic and are experiencing higher ongoing levels of risk. The group started off as individuals asking for help while still in isolation during the pandemic.
3/x They were speaking as individuals trying their best to be heard virtually, as they were not able to leave their homes and re-enter normal life like everyone else. However, the #forgotten500K patient campaign brought them together, providing support and one voice. amazing
When will the clinically vulnerable stop being collateral damage, @RishiSunak? When will the #Forgotten500k get the same chance to survive this as everyone else? I need #Evusheld to safely access healthcare and daily life again.
@DHSCgovuk
@SteveBarclay
@andreajenkyns
@DHSCgovuk
@SteveBarclay
@andreajenkyns
(1/7) I've lost so much of myself to shielding. My life has ground to a halt, I'm socially isolated, and the constant trauma of knowing that people have decided that my life is worth less than the inconvenience of wearing a mask, including doctors, is utterly draining.
(2/7) I've had to withdraw from the Uni course that I worked through horrendous illness for years to get onto, because they no longer support remote learning, and treated my reluctance to risk serious illness as anxiety to be 'gotten over'. The stress made me physically ill.
@NickyMorgan01 All references to the pandemic in your consultation documents refer to the pandemic in past tense. This is offensive in the extreme to those who are still at high risk of severe outcomes, because COVID IS NOT OVER, and affects us on a daily basis. 🧵👇
@NickyMorgan01 As an immuno compromised person shielding alone continuously for 32 mths, one of 500,000 ppl totally abandoned by the govt, the attitude that Covid is over whilst we are still suffering is disgusting. Our lives have not moved on, nor our prospects improved at all, because 🧵👇
@NickyMorgan01 in spite of many vaccines, most of us are not able to create the antibodies that they are designed to stimulate.
We need monoclonal antibody prophylactics, like Evusheld.
Not to mention the number of people suffering from Long Covid, or bereaved from deaths following 🧵👇
We need monoclonal antibody prophylactics, like Evusheld.
Not to mention the number of people suffering from Long Covid, or bereaved from deaths following 🧵👇
1/x Several months ago, @katebingham2 drove the UK pandemic response. She is incredible 🦸♀️- thanks for your insight. But then she finished and something extraordinary happened. The Winter plan to protect the #immunocompromised was quietly dropped....😫 Why does it matter? 🤷🤷♂️🤷♀️
2/x Because it had widespread clinical & academic backing for our 2022 Winter plan. Cohorts were identified & large teams of clinicians worked around the clock to work out which of #immunocompromised who don't have high levels of protection from vaccination could be protected 👩⚕️
3/x This would have put us in line with 32 countries who were protected their #immunocompromised during the Winter months when COVID cases rise. If you don't respond to vaccines 💉, then your risk of hospitalisation, ITU admission & not recovering from COVID is 📈
THANK YOU to all who’ve retweeted anything from me and our campaign tribe on @evusheld4theuk in the past 6 mths. You, our media & medical allies are our only route to getting the message out to beyond our echo chamber to convey how important this is, how it affects everyone.👇
We’re seeing breakthrough with backing from MPs, but not there yet. Please don’t give up on us. We still need you. If you’re near Parliament Green at lunchtime, pop by for a chat.
Apart from that, please let your MP and @SteveBarclay know you’re on our side. 🙏
#Forgotten500k
Apart from that, please let your MP and @SteveBarclay know you’re on our side. 🙏
#Forgotten500k
@threadreaderapp Unroll, please
1/x 🧵 ***NEW RESEARCH 👨🔬 *** About #immunocompromised #forgotten500k #cancer. It's a BIG paper, analysing the global data 🗺️. Answers the question- how big is the issue of absent immune responses following covid vaccines. @BrJCancer by @michaeltilby nature.com/articles/s4141… 💛💚
2/x Why did they do it? Because 1⃣ cancer patients are at high risk from covid 📈 2⃣ Many don't get an immune response to vaccines 💉 3⃣ They wanted to find the scale of the problem 💥. So they decided to go global! 🌐
3/x. The team searched 3065 papers published from the start of vaccination to March 2022. They looked at third dose boosters 💉. They looked across all cancer types. They found 15 studies encompassing 1205 patients🧑🤝🧑. The largest global review 🌍
.@RobertJenrick
Here’s a plan for your ‘trial’ of #Evusheld .. Buy it for the #Forgotten500k NOW, and observe what happens. You’ll soon see how effective it is with Omicron. I’ll sign any release you want.. any disclaimer. You can have all the glory. But an RCT?👇
Here’s a plan for your ‘trial’ of #Evusheld .. Buy it for the #Forgotten500k NOW, and observe what happens. You’ll soon see how effective it is with Omicron. I’ll sign any release you want.. any disclaimer. You can have all the glory. But an RCT?👇
How long would it take? How many would sign up for it? Do you think ppl who’ve been shielding for so long to protect themselves would be willing to risk being given a placebo, knowing they risk death? Be serious.
What you’re proposing is unethical and makes no sense. Wake up!👇
What you’re proposing is unethical and makes no sense. Wake up!👇
P.S. Had to delete previous post on this to get rid of an irksome, poisonous little imp. Apologies to all those who had liked and shared before.
This was one..
This was one..
1/x 🧵Let's talk about cancer patients, #immunocompromised, our UK #forgotten500k and COVID. Here's a incredible article by @EnnalsEthan at the @MailOnline and @DailyMailUK. Full post here 👉 dailymail.co.uk/health/article…. Here's what it reports.....
2/x The father unable to hug his teenage daughter 🫂, a retired nurse 👩⚕️unable to walk down the streets, the heartbreaking stories of the Britons with health conditions that mean they are still in self-isolation, shielding from COVID-19. They are the #immunocompromised ♥️🤎💜💙💚
3/x Imogen Dempsy said "my blood test show I have no protection against COVID-19". There is a drug that would provide protection to those that don't respond to the covid vaccines 😷👍. BUT...Evusheld is only available in the UK only to patients who are willing to pay for it. 😢
This week I spoke to @JamesTGallagher at @BBCRadio4 about what it is like to be #immunocompromised and #shielding from covid for nearly 1000 days.👇
bbc.co.uk/sounds/play/m0…
Here's a 🧵 about why I told my family's story. 1/15 @LUPUSUK @RAIRDA_org #evusheld #Forgotten500k
bbc.co.uk/sounds/play/m0…
Here's a 🧵 about why I told my family's story. 1/15 @LUPUSUK @RAIRDA_org #evusheld #Forgotten500k
I am one of 500k people in the uk who is still #shielding nearly 3 years into the pandemic. We are all #immunocompromised due to #autoimmune diseases, transplants and blood cancers 2/15 @bloodcancer_uk @kidneycareuk @LUPUSUK @RAIRDA_org #Forgotten500k @evusheld4theuk
Like thousands of others, I am not only more vulnerable to severe illness from covid due to my illness #lupus, but I am completely unprotected despite vaccination. As a result I need alternative treatments like #evusheld 3/15 @DHSCgovuk @RobertJenrick @evusheld4theuk
1/x 🧵 Regarding #Evusheld on Bupa. I am *BEYOND SHOCKED*. If you are immunocompromised with cancer, autoimmune disease, kidney disease or on immunocompromised want COVID protection, you won't get it on the NHS. Your only choice is to go to private healthcare 🏥 #forgotten500k
2/x It feels wrong that if you are #immunocompromised and wealthy 💸, then you will get coronavirus protection, BUT... if you are #immunocompromised and poor 🪙👛, you can't. This is going to cause equality based on how much you earn. This doesn't feel right or British. 🇬🇧
3/x Thanks @EnnalsEthan for unshielding this tactic to have covid protection only in the private, but not NHS. #immunocompromised patients just want to hug loved ones and see family 🫂. Do they have a valid choice? Does health need you to be rich? BIG QUESTIONS. @libdemdaisy
1/ A 🧵- I support the #Forgotten500k who are being denied the lifesaving treatment #Evusheld. Please read my previous thread for more background @RobertJenrick @theresecoffey @Jeremy_Hunt @DHSCgovuk @evusheld4theuk @APPG_VGP
2/ The immunocompromised continue to be denied access to this treatment despite compelling clinical evidence and supporting data, and extensive support from clinicians and patient support groups. There is fantastic advocacy for the use of #Evusheld from @drlennardlee
3/ @libdemdaisy recently raised this issue in Parliament (thank you) and one of the reasons @RobertJenrick gave for not procuring Evusheld for the immunocompromised is that it might give them a false sense of security and cause them to change their behaviours. Yes seriously!
1/x 🧵A friend sent me this asking what is this about? I found out. This is the story of what led to to this most public and most significant direct patient plea to @RobertJenrick I have not seen this EVER happen before. #forgotten500k
2/x It's coming from the 500,000 who are immunocompromised who are at risk from COVID-19. Still unable to work, see friends or hug loved ones. They are #forgotten500k, unheard and calling on us to notice. They have collected donations to ask for help from power. Hence all the ads
3/x They want protection that has been given to 32 other countries, but decision making has been stalled in the UK. They would like prophylactic antibody therapies to prevent them getting unwell with COVID as cases rise.
1/x 🧵 ***NEW RESEARCH *** from @EdinburghUni. The paper is relevant for the #immunocompromised and #evusheld and #forgotten500k. It really acts as a WAKE UP & ACT call. It a good paper. thelancet.com/journals/lance…
2/x What's the background? The pandemic continues. 👾Some people are at excess risk and can't hug loved ones, see family or enter normal life 😢. We all believe they are the #immunocompromised, but what does the data show? 💻
3/x This data looked at 16 208 600 vaccined individuals across England🏴, Scotland🏴, Ireland 🇮🇪 and Wales 🏴. i.e. EVERYONE. From Dec 8, 2020, and Feb 28, 2022, so it includes the OMICRON ERA, so relevant. Risk was very carefully defined.
1/x 🧵 ICYMI, the largest UK health campaign has just kicked off today. For the #immunocompromised in the UK, young and old, those with cancer, @bloodcancer_uk, autoimmune disease, transplants and kidney disease. And it's making a huge splash. I've been asked to comment.
2/x What's the background? There are half a million immunocompromised people in the UK. Many are still shielding, still in isolation, still unable to work, see friends or hug loved ones. They are #forgotten500k, unheard and calling on us to notice.
3/x Health campaigns are rare . Rarely are patients so motivated to demand action from MPs like @RobertJenrick. They are a minority, facing a niche issue, which is easy to dismiss. It's even worse if you can't leave the house because you are still shielding. How are you heard?
BIG news as we unveil the campaign we've been working on with our charity partners for months: #Forgotten500k in support of @evusheld4theuk.
It starts with full-page national press adverts that will continue to run this week. Here's The Guardian.
getevusheld.uk/500k/ 🧵 1/8
It starts with full-page national press adverts that will continue to run this week. Here's The Guardian.
getevusheld.uk/500k/ 🧵 1/8
We should be on BBC Breakfast this AM, too, BBC Radio Scotland at lunch time, South Today and South East Today, Inside Health on Radio 4 on Tuesday, and Newsnight on Friday. 2/8
These ads highlight the plight of the forgotten 500k immunocompromised individuals in the UK who are denied Evusheld by UK government policy. The advertising was designed pro bono by The&Partnership with media secured by mSix&Partners. They have been SO generous. 3/8
1/x 🧵Worried to be thrown into a big Berlin protest #whs2022. I am here for #immunocompromised patients and learn about better covid prevention. Now there’s protester glued to the buildings, shouting 😡 at the 3500 conferences attendees about climate change. Police have arrived.
2/x This all is not good. Global collective approaches are essential. People must talk. Leaders must talk. Then there should be action. When people don’t feel there is transparency and have to protest, something has gone DEEPLY wrong.
3/x There must be DEEP trust and transparency in leaders. We must bring the public with us and explain the pros and cons. There should not be closed doors. These are key messages that the @IAPartnership are pushing and trained us to deliver. Protests=failure
1/x 🧵 I was thrilled to be talk to @Chikwe_I, WHO assistant Director-General of Health Emerrgency intelligence at @WorldHealthSmt. We talked about protecting #immunocompromised. As an global leader, he had insight about working at system interfaces for change. #incrediblesummit
2/x. He talked about how systems must learn & maintain learning. He talked about a lot of the new talent and expertise generated, particularly entrenching change. He talked about @PeterHorby & other oxford wins, like vaccination. I couldn't believe Oxford had such global reach.
3/x. He was also very gracious with me. I explained the #forgotten500k plan to protect UK immunocompromised patients. He notes that protecting the #immunocompromised and those with cancer who don't respond to #vaccination is a global issue. I told him about antibody therapies.
1 @JNkengasong is a key global leader on public health, Special Representative for Global Health Diplomacy & prev. director of Africa CDC. He led Africa's COVID-19 response. He was awarded the @virchowprize and was generous with his time . This is what I learnt #forgotten500k
2/x He said it is important to raise awareness of COVID-19. Many are suffering & people are still being hospitalisation & not recovering from it. 🧐 Health advocacy is important 💪. You must speak truth 🔊, use expertise, work for patients to appropriately lead emergency plans.
3/x He said it is important to acknowledge that we stand on the shoulders of giants, but it is also important for the new generation of health scientists 🧪 to show the way forwards when there are new ideas that can help and where there is experience. 🙂. His career showed this.
1/x 🧵***New data *** A double🧦 Lancet headline paper @TheCrick in London from @stcshepherd @TurajlicLab @DavidLVBauer. Results are ASTONISHING about whether we need to protect the #immunocompromised #forgotten500k. thelancet.com/journals/lance… & thelancet.com/journals/lance…. Pls RT.
2/x For those who you don't know. @TheCrick is one of our UK's leading research 👩🔬💪heavy weights with some of the best scientists in the country like @stcshepherd @TurajlicLab @DavidLVBauer. For them to be weighing into the national pandemic landscape is timely & important
3/x. Paper 1⃣ asked the question about cancer patients. They are very #immunocompromised, especially @bloodcancer_uk patients. @stcshepherd @TurajlicLab assessed ~200 cancer patients from their study and looked at immune response to omicron. A study and measure of "protection".
1/x 🧵 This is a great read for those interested in the pandemic response for #immunocompromised who don't respond as well to COVID-19 vaccines- telegraph.co.uk/global-health/… from @Telegraph @katebingham2. Relevant to #immunocompromised
3/x What's my take on the points? There are half a million immunocompromised people in the UK. Many are still shielding, still in isolation, still unable to work, see friends or hug loved ones. They are #forgotten500k, unheard and calling on us to notice.
