Born with Haemophilia Given HCV by the NHS by the age of two #Notrecognised #cheaperthanchimps #TheElephantInTheRoom #Eugenics?
Joined April 2024
- Tweets572
- Following96
- Followers27
- Likes494
Pinned Tweet
HAEMOPHILIA HCV victims, the elephant in the room.
@andyburnham @IBCA_UK @cabinetofficeuk @HaemoSocUK
Lab Rat retweeted
Can you explain? It seems there’s conflicting information. Do you truly understand the further harm your organisation are causing? @IBCA_UK FYI @IanLaveryMP @samuelevolpe
Lab Rat retweeted
#NotRecognised #NotAnAccident 100% risk of HCV in factor 8. Moving to larger pools created bigger risks of viruses.
Mono HCV haemophiliacs have not had their childhood loses recognised. Multiple re infection with every dose of factor. Extremely unwell through school, fatigue, photos of kids yellow because of their bodies fighting HCV all unrecognised.
We are not the same as an older transfusion victim. We have been badly let down in the current scheme. @andyburnham we ask that you acknowledge not only our letter from MHH but those from other campaigners and Societies.
@fionatwycross @UKHouseofLords @HouseofCommons @UKgovcomms @CliveEfford @markpack @KieranMullanUK @DianaJohnsonMP @IanByrneMP @IBCA_UK @IBCA_CEO_UK @LabLab15460 @Gooders2023 @steveb297 @GraymF1
@andyburnham it would be awful if you've led this community into falsely believing that you would help. Show this isn't the case & at least acknowledge letters sent to you by people still going through this trauma. Look at mono hep C, look at @IBCA_UK & fix it.
Lab Rat retweeted
Radio silence!
Why have a community panel when they don’t engage or are not allowed to engage with the community. Was this another tick box task. Our community think so!
@IBCA_UK @IBCA_CEO_UK
What / whom do the community panel represent if they do not communicate or have a direct email whereby members can put their issues to them?
Do you share minutes of the meetings with “the panel”.
@KieranMullanUK @UKHouseofLords @andyburnham @cabinetofficeuk @fionatwycross @sianberry @ashishskynews
@ConanMci as part of the community panel can you ensure our voice is heard within @IBCA_UK
I know my MP has written as to how we contact the panel who are supposedly there to support the community and hear our voices. I have been asked numerous times within our Mono HCV Haemophiliac group how we contact the panel as well.
We need action now we cannot be the forgotten haemophiliacs. We are not the same as transfusion victims. We have had a childhood that was driven by infection and distrust. Parents were told that factor was safe! Mild haemophiliacs given deadly factor VIII for dental work, as a precaution for joint pains. All the while KNOWING the risk of such treatment.
We must not be left behind.
@KieranMullanUK @DianaJohnsonMP @CliveEfford @andyburnham @fionatwycross @cabinetofficeuk @steveb297 @Gooders2023 @GraymF1 @GlennWilko58 @LabLab15460 @HaemoSocUK @HaemoSocUK_PI @katehaemophili1
Lab Rat retweeted
@fionatwycross @UKHouseofLords @andyburnham @LouHaigh @jamesmurray_ldn
@Nigel_Farage it would be interesting to see where you stand on infected blood issues.
May 20th 2024 at the final report of IBI Sir Brian announced “this was not an accident”. Haemophiliacs knew all along and had been campaigning for decades to be heard. We felt elated, believed and listened to.
On 21st May 1 DAY later we all came crashing down to earth. The former Minister announced the compensation framework and the creation of IBCA.
No campaigners were asked for input.
The haemophilia trust was not asked for input.
It had been decided with a very well paid legal team. This was we believe to protect the Government and to keep the public from
hearing of the systemic abuse of haemophiliacs. Their stories and truths were once again swept under the carpet.
The community felt broken.
It has to be said haemophiliacs are resilient. We have a way of coming back fighting. We will not rest till ALL haemophiliacs get justice and recognition for the negligence and abuse that has been done to them by a the State. We call on you @andyburnham to #FinishThisFight to sit with our group MHH and all the long term haemophiliac campaigners along with the @HaemoSocUK and @katehaemophili1 @IBCA_CEO_UK who are acutely aware of where we stand. We would also ask that @DianaJohnsonMP who has extensive knowledge of our plight be involved as well as the new Minister @jamesmurray_ldn
100% transmission of HCV in factor vs 0.5-1% in transfusion pool. We are not the same….
@cazjwheeler @TheNewsAgents @AP @IBCA_UK @Channel4News @BBCHughPym @ellapickover @addresstheharm @Haemosexual @GraymF1 @Gooders2023 @HaemophiliaIRL @DarcusWolfe @LabLab15460 @IanByrneMP @NowHillsborough @KieranMullanUK @Nigel_Farage @KemiBadenoch
Lab Rat retweeted
Radio silence from @andyburnham the man who had a lot to say at the Infected Blood Inquiry has still not replied to letters….
Haemophilia the governments dirty word…. The secret they are trying to hide.
HCV haemophiliacs are not the same as a whole blood transfusion victim.
No haemophiliac has been compensated yet for the negligence of our government. They knew the risks Sir Brian concluded this was #NotAnAccident the data was out there regarding factor. The HCV risk was 100% within the plasma pool. But they still went ahead and gave it to virgin haemophiliacs who went in for mild ailments…. They gave them a life sentence and have not recognised this within the scheme. We are not the same.
No haemophiliacs have been truly compensated for state abuse @andyburnham @jamesmurray_ldn @IBCA_CEO_UK @cazjwheeler @BBCHughPym @HaemoSocUK
Lab Rat retweeted
@IBCA_CEO_UK as discussed with you many living infected are getting older and really need closure. They need to move on and live what remaining time they have in peace.
I have been speaking to members and many are not be able to make decisions until this is the case. There is also the added worry that if they sadly pass their claim dies with them, an extra burden they are carrying.
If this was to happen, it would be extremely unfair and unjust being that they have waited years for the recognition they rightly deserved. Especially in the case of haemophiliacs this scandal has been decades in waiting.
Compensation in dribs and drabs means having to re live the abuse over and over again. This wouldn’t happen in a legal challenge.
Please can @ibca devise a plan of action on how you envisage the supplemental route to run within the current sequencing.
Lab Rat retweeted
Why are @IBCA_UK stretching the compensation claims process out over years for the infected? boondoggle?
It took them 5 months to invite me to claim and 6 months to work out how much they were going to pay me. They then added me to a fake news headline saying as an infected victim I'd been paid. So so far from the truth.
Up to another year to wait for the first IOU for the fourth round of regs for interferon and a few bits they got wrong, like, not paying until I was 16 regardless of the fact I was about 2 when they infected me with hcv and hbv. Now I'm told that that's not all, we will still owe you for unethical research. The waiting for IBCA has become as stressful as waiting for the Government to accept something went wrong in the first place.
@cabinetofficeuk @andyburnham @HaemoSocUK
Why are @IBCA_UK stretching the compensation claims process out over years for the infected? boondoggle?
It took them 5 months to invite me to claim and 6 months to work out how much they were going to pay me. They then added me to a fake news headline saying as an infected victim I'd been paid. So so far from the truth.
Up to another year to wait for the first IOU for the fourth round of regs for interferon and a few bits they got wrong, like, not paying until I was 16 regardless of the fact I was about 2 when they infected me with hcv and hbv. Now I'm told that that's not all, we will still owe you for unethical research. The waiting for IBCA has become as stressful as waiting for the Government to accept something went wrong in the first place.
@cabinetofficeuk @andyburnham @HaemoSocUK
Lab Rat retweeted
#FinishThisFight #NotAnAccident still no response to the letters from @HepatitisCTrust @HaemophiliaIRL, MHH, CBC and other groups.
PM you had a lot to say, as you always do at the infected blood inquiry but you have now gone silent. Is this because your position means you have to toe the line like you did when you was the health minister. Or is it because you just talk a good talk with nothing to back it up? @KieranMullanUK
@GraymF1 @Gooders2023 @LabLab15460 @UKHouseofLords @fionatwycross
Lab Rat retweeted
Infected being paid out in government IOU’s. Unable to make financial decisions, constant re traumatising the victims with every call back to claim.
No projected timings of when exceptional financial loss will be brought in. Even tho regs are already in place. People will die without having received full and final compensation.
#NotRecognised #NotAnAccident
@cabinetofficeuk Robin Healey @fionatwycross @IBCA_UK @IBCA_CEO_UK @andyburnham @katehaemophili1 @HaemoSocUK
Lab Rat retweeted
@fionatwycross @UKHouseofLords we still have unanswered questions.
History cannot be changed to suit your narrative. Haemophiliac children were abused by the hands of those we thought cared.
Mono HCV haemophiliacs have not had their educational losses recognised. Multiply reinfected, exposure to viruses. Ignored by the schemes and put in with adult transfusion patients who had a “normal” healthy childhood. We are not the same.
@LabLab15460
Why wasn’t ddavp given to mild haemophiliacs?
Why were the consultants quick to reach for factor? The risks were known, they were ignored. This is medical negligence and criminal harm.
Treating children with risky Factor has given them life altering and life ending diseases. Haemophiliacs were used time and time again to infect and use for research.
Haemophiliacs have not been recognised within the current scheme.
This decision was calculated to down play governments part in the scandal. It is abhorrent to think the state would knowingly infect a vulnerable cohort.
haemophiliacs 100% infection 0% recognition #NotRecognised #NotAnAccident
@andyburnham #FinishThisFight
@jamesmurray_ldn
@DianaJohnsonMP
@CliveEfford
@katehaemophili1
@ConanMci
@cazjwheeler
@LabLab15460
@GraymF1
@Gooders2023
Lab Rat retweeted
MHH sent a letter detailing how our group of mono HCV haemophiliacs has been so badly let down within the scheme and societies. For a man who was so vocal within the infected blood inquiry @andyburnham your silence is deafening. Is it now because you are PM you have decided to stick your fingers in your ears and ignore the community?
@KieranMullanUK @DianaJohnsonMP @CliveEfford @IanByrneMP @IanLaveryMP @fionatwycross @sianberry @HaemoSocUK
.@andyburnham @10DowningStreet The infected blood community are waiting to hear from you. We've sent three letters and a book of handwritten letters to No10 asking you to meet with victims. Will you reply?
RT to spread far and wide.
ALT Infected blood loved ones protest for justice.
vCJD
As a haemophiliac victim the practical and psychological consequences of being notified of an increased vCJD risk are not compensated as a standalone matter under the Infected Blood Compensation Scheme.
Why not?
The scheme’s eligibility is limited to infection with HIV, hepatitis C (acute or chronic), or qualifying hepatitis B (chronic, or acute that caused death within 12 months). Notification of increased vCJD risk, without one of those infections, does not create eligibility.
Haemophiliacs told they are at increased risk of vCJD (because they received relevant blood components or products) are generally advised to:
Not donate blood, tissue, or organs.
Inform doctors, surgeons, and dentists before procedures so that special (precautionary) arrangements can be made for instruments if needed.
Have a note of the risk placed in their medical records.
These steps are public-health precautions. Official guidance stresses that they do not mean the person is infected or infectious, and that ordinary medical and dental care should not be compromised.
In practice this openly shows PANIC in NHS staff.
@cabinetofficeuk
@IBCA_UK
@IBCA_CEO_UK
@TeriG2569
@HaemoSocUK @Haemosexual
Lab Rat retweeted
@ConanMci as part of the community panel can you ensure our voice is heard within @IBCA_UK
I know my MP has written as to how we contact the panel who are supposedly there to support the community and hear our voices. I have been asked numerous times within our Mono HCV Haemophiliac group how we contact the panel as well.
We need action now we cannot be the forgotten haemophiliacs. We are not the same as transfusion victims. We have had a childhood that was driven by infection and distrust. Parents were told that factor was safe! Mild haemophiliacs given deadly factor VIII for dental work, as a precaution for joint pains. All the while KNOWING the risk of such treatment.
We must not be left behind.
@KieranMullanUK @DianaJohnsonMP @CliveEfford @andyburnham @fionatwycross @cabinetofficeuk @steveb297 @Gooders2023 @GraymF1 @GlennWilko58 @LabLab15460 @HaemoSocUK @HaemoSocUK_PI @katehaemophili1
Ignoring that mono HCV haemophiliacs had a disrupted education, thus having a knock on effect on their grades and careers. How could a multiple reinfected child have the same education as a “normal” uninfected child. Sir Brian picked up on this throughout the inquiry, it was even documented in a draft document sent out by @government when @NickTorfaen was the paymaster general. I know that the societies saw this along with another campaigner. It was then taken out, because it was seen an admission of liability that all multiply infected children would have struggled with reaching their full potential.
Knowingly Infected multiple times as children, multiple exposure to viruses. Seriously unwell, coping with fatigue we too had no chance of a normal education reaching our full potential.
@fionatwycross if this does not get revisited we have not been heard and understood. @andyburnham please fix this and give our Mono HCV community the justice the so rightly deserve.
We highlighted this in our letter, for ease of reference I attach a scaled down version.
@katehaemophili1 @HaemoSocUK @CliveEfford @IanByrneMP @IanLaveryMP @KieranMullanUK @sianberry @Gooders2023 @GraymF1 @LabLab15460 @DarcusWolfe @DHSCgovuk @cabinetofficeuk Robin Healey
@IBCA_UK @IBCA_CEO_UK @DianaJohnsonMP
