My problem was I couldn’t book the 3rd or 4th, as somehow, it’s not automatic with me, I had to go to a walk-in and blag my way through the 3rd, and had a letter from my hospital for the 4th
haven’t tried the 5th yet, I’ll wait a bit after having covid
2 Likes
Hi @heatherthomas the main thing is that you be kind to yourself.
How are you feeling now?
You have time on your side before looking into your 5th vaccine.
Take lots of special care of yourself.
1 Like
@BloodCancerUK-SupportTeam can you please confirm if serology testing in relation vaccine antibody response officially forms any part in the selection process for treatment on contracting covid. Also your thoughts on any suggestIon that it may become part of the selection process for Evusheld should it ever get into our arms. I have read it’s inconclusive in so far as the number produced is meaningless without the strength of the antibodies being known.
1 Like
Hi @MCA,
Thanks for your comment, It is understandable that you have questions surrounding this. I hope you’re keeping well?
It is our understanding that for people who are eligible to be assessed for covid treatments, they will not need an antibody test before receiving treatment. This group of people are found to be eligible for the treatments as they are considered the highest risk non-hospitalised patients; it is not based on whether they have antibodies at the time they test positive.
We have a recent blog which may be somewhat helpful to read through- Blood Cancer and Covid: What happens if you test positive? | Blood Cancer UK
We also have a video from professor Claire Harrison who talks through CMDU process incase it is useful for you- Access to new Covid treatments for people with blood cancer - YouTube
Please do know @MCA should you ever wish to talk anything through with us, we are only ever a phone call away- 0808 2080 888
Do Take Care, Lauran
1 Like
One in 22 Covid deaths are in people with blood cancer
27th Apr 2022
According to new data from the Office of National Statistics, 1 in every 22 people who died of Covid in England and Wales between January and March had blood cancer.
People with blood cancer are greatly over-represented in Covid deaths
The data published today (April 27) shows 404 people with blood cancer died of Covid during these three months, out of a total of 8,769 deaths. It takes the total number of Covid deaths of people with blood cancer during the pandemic to 3,963. Around one in 270 people in the UK have blood cancer, which means they are greatly over-represented in Covid deaths.
In response to this new data, we’re calling on the NHS and the Government to do more to protect people with blood cancer. There are three things we believe would significantly reduce the number of people dying.
We’re calling on NHS and the Government to:
1) Speed up the vaccine roll-out
The vaccine roll-out for the immunocompromised has been far too slow and made it difficult for the immunocompromised to access the doses they need, meaning many people haven’t got the protection they need. The Government and NHS should treat this with much more urgency, and NHS England must publish a plan for how it will speed up the roll-out.
2) Improve access to new treatments
The NHS needs to make sure everyone with blood cancer eligible for new treatments can access them quickly if they test positive for Covid. In many cases this is working well and saving lives, but we’re still hearing from people who are struggling to access them.
3) Set out a plan for giving immunosuppressed people access to Evusheld
The Government should set out its plan for giving people access to Evusheld, a treatment that can help protect people whose weakened immune systems mean they have not responded well to the vaccines. The treatment has been approved by the Medicines and Healthcare products Regulatory Agency (MHRA) and is already available in countries like the United States and Israel. But the Government has not yet set out how it plans to use it to protect vulnerable people here.
Gemma Peters, Chief Executive of Blood Cancer UK, said:
“This data shows that despite many of them continuing to be careful and trying to avoid social interactions, people with blood cancer are continuing to die of Covid at alarming levels. We can understand why the Government wants the country to get back to normal, but this shows its failure to accompany this with better protection for the immunocompromised has had tragic consequences.
“Each of the 404 people with blood cancer who died of Covid between January and March is a tragedy, and it is likely that a number of these deaths could have been prevented if the Government and NHS England had done more to protect them. We hope this data acts as a spur for the Government and the NHS to do more.
“The badly managed roll-out of vaccines for the immunocompromised stands in stark contrast to the success of the general vaccine roll-out, and we cannot understand why NHS England is not treating this with more urgency. The tragic fact is that until NHS England gets a grip on this, we are likely to see more deaths in people with blood cancer that could have been prevented with a readily available vaccine that costs just a few pounds.
“The NHS also needs to improve its processes to make sure everyone with blood cancer who gets Covid can access new treatments to give them the best chance of surviving. While we can understand why there were teething problems when the new treatments were made available in January, it is unacceptable that we are still hearing about people struggling to access them three months on.
“We also want the Government to make Evusheld available for some people with blood cancer who haven’t had an antibody response to the vaccines. In 2020, the Government was prepared to buy vaccines before it was clear that they worked - they recognised that it was a risk worth taking, given the potential benefits of the vaccines. Given that there are some people with blood cancer who are still at significant risk, we should be taking the same approach to them.”
1 Like
Your reply to my earlier post was only partial.
Whilst it was helpful to confirm serology testing forms no part in eligibility for current treatment, as well it should not.
You do not comment further in relation to Evusheld.
I now am a little more concerned that in your communication regarding the death toll we are enduring Gemma Peters says that “We also want to make Evusheld available for some people with blood cancer who haven’t had an antibody response to the vaccines”
This is concerning on several counts if the suggestion is that criteria for eligibility should now involve serology testing for antibody response when indeed at the moment it does not in relation to other treatments.
I say this because as far as I am aware this form of testing is inconclusive and so far the NHS have not been carrying out these tests on Blood Cancer patients unless on research programs. Hence many resorting to Private test which accuracy is questionable.
So if you are recommending Evusheld which I totally ageee with why the suggestion implied by the word “Some”
Have you knowledge of an effective qualitative test that says x amount of antibodies are good enough to offer protection. The quantity of antibodies after all is not a reliable indicator.
Are there criteria applied elsewhere in the world to assess which of the imunosurpressed or compromised are eligible?
Even if there were such a test then it’s going to take some time to test the majority of 500000 people who have not been tested.
Perhaps the recommendation should say if we are forced to accept rationing to get Evusheld then the Government better get on with working who the elligible are . Moreover justify the science of any selection process ASAP before more of us die unnecessarily.
I look forward to your response.
@BloodCancerUK-SupportTeam further to my post above to you with questions re suggestions of rationing of Evusheld.
I also sent some questions on the logic of the current CMDU set up, and look forward to your response.
I would like to also query why 119 plays any part in the system. This is part of the failed test and trace system run by Private sector probably Serco.
I note if in 24 hours if no response ring 111 (nhs) your doc or consultants to make a referral So why bother with 119 at all ?
After all they only get someone from CMDU to call you. Why can we not call CMDU give them a pre obtained eligibility code. They then directly organise treatment if deemed clinically necessary. Still the fact they dont have access to medical records and the assessment appears a checklist based approach from people who have no prior knowledge seems an unusal methodology to say the least.
If this system is working why is the death rate for blood cancer patients not going down ?
@BloodCancerUK-SupportTeam do you know if the Government has any data to show either the sucess or not of its treatments specifically for those who test positive for Covid and who have blood cancer. The fact we still account for 4.6% of the total covid deaths jan to march is very concerning.
Sadly a phone call is when treatment is decided. There is a NHS list of conditions that make patients eligible for consideration for anti body or antiviral treatment but the operative words are eligible to be considered for treatment (note its not entitlement to treatment)
1 Like
Recent article highlights the holes in current delivery system.
This is so worrying. My husband has relapsed Myeloma and I feel we are no further forward than we were 2 years ago. Why is it such a battle when your not feeling great we are always the ones who have to do the chasing. 
Stay safe everyone.
1 Like
Any news on the brief for the government with the 5 tests to make sure people at highest risk from Covid-19 are well supported to live with Covid-19 now and into the future.?
I will copy your question to @BloodCancerUK-SupportTeam for you.
Yes, i agree why is it such a battle when your not feeling great we are always the ones who have to do the chasing.
Take lots of care of yourselves.
Much appreciated Erica, there has been no news on this for at least 2 months.
1 Like
Hello all
Two messages here…
The Evusheld campaign has passed the 10,000 signature threshold and the Government response is “Keep Calm, keep taking the tablets and testing and maybe they will look at this option once further data re Omicron is available…” so don’t hold your breath BUT keep spreading the word - there are now 13,000 signatures so we are on our way to the 100,000 required to get this debated in Parliament.
Other point - The “Distance Aware” campaign is a hopeless flop; it started in Wales and spread to Scotland and came to a halt because English NHS did not follow suit and because it was poorly publicised (surprise!). In Scotland badges (too small, that went rusty in the rain) and lanyards were available in Libraries and Asda (my nearest is two hour drive) but I did hear of an announcement in our local Co-op !! Anyway as it seemed like a great idea for us 500,000 immunocompromised so I took the initiative and distributed posters (yes they forgot to send them out) to the GP surgery, Hospital, School, Fire Station, Mountain Rescue, high St chemist and a few shops - and wear my Lanyard at all times BUT now because there is no national recognition people (tourists and visitors) come up (close) and peer at the lanyard badge and ask what it is - admittedly then they back away but too late! !
Like most others I have had endless problems with shielding lists and probably pointless innocculations and wonder when if ever the non Mrna vaccines that could give us long term protection might be considered ???
In the meantime lets keep pushing for Evusheld - a step in the right direction…
Good Luck
Stella Creasy
Labour
Walthamstow
Commons
To ask the Secretary of State for Health and Social Care, whether his Department holds any list of patients who have been identified as immunocompromised and are eligible for new covid-19 treatments first…
This answer is the replacement for a previous holding answer.
Answer
Maggie Throup
Conservative
Erewash
Commons
Answered on
21 March 2022
The Department commissioned an independent expert group to identify clinically eligible patient cohorts most likely to progress towards developing severe COVID-19. These cohorts form part of an evidence-based clinical policy for the treatment of COVID-19, agreed by the United Kingdom Chief Medical Officers. The treatments available include the monoclonal antibody therapy sotrovimab, as well as the oral antiviral treatments molnupiravir and nirmatrelvir + ritonavir.
The Department does not hold a list of these patients, nor any identifiable personal information