How are the government going to protect us

Hi everyone on this lovely sunny day.
Now Evusheld has not been approved, and some antivirals might be withdrawn, no news of 7th vaccine that might, could, may work and rumours of CMDUs closing oh and also optional mask wearing in hospitals. Was wondering if Blood cancer uk had any news about how the government are going to protect us going forward. Thank you.

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Hi, @Ted369, I asked my MP about the Spring Booster. He said he would look into it. Will post on the forum if and when he gets an answer.

Best wishes

Helen

Helen

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Hi @Ted369 it’s so understandable you have questions around this. We’re asking the NHS for updates around the timeline of the roll out of the Spring covid vaccine booster (which for many with blood cancer will be their 7th dose), as well as information about eligibility, and will continue to update our webpage here as we learn more - How to book a covid vaccine if you have blood cancer | Blood Cancer UK.

We’re also pushing for information/updates around the possible move of CMDUs to primary care. Please be assured that Blood Cancer UK will provide the NHS with feedback and support for any future changes to the post exposure treatment programme, to ensure that it is as efficient as possible for out community. We will be sure to update on this when we know more.
We are continuing to push the government to set out a clear plan for how best to protect immunocompromised people as we continue to live with COVID-19, including better access to vaccine boosters and post-exposure treatments. We know it’s still an uncertain time, so please do remember we’re only a phone call or an email away if anyone wants to talk things through.

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Thank you Alice for your quick response :slightly_smiling_face:

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Hi everyone,
The National Institute for Health and Care Excellence (NICE) has released new guidance about COVID-19 post-exposure treatments for people with blood cancer, which we understand will apply across the UK.

NICE continues to recommend the antiviral Paxlovid and the antibody Xevudy (sotrovimab) for anyone who can’t have Paxlovid. RoActerma (tocilizumab) is recommended for those requiring inpatient treatment. After looking at the clinical and cost effectiveness of all current treatments, NICE no longer recommends the antivirals remdesivir and molnupiravir - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK

We’re pleased that NICE have recognised that Paxlovid can interfere with other drugs that some immunocompromised people take, and so sotrovimab continues to be available where Paxlovid isn’t suitable. If you have any questions about what this new guidance means for you, make sure to speak with your health team.

We don’t yet have information about when these changes will take effect, but NICE has said that current arrangements will continue until it publishes its final guidance on COVID treatments, which is expected in March.

And as always, if you need to talk, you can contact our support team on: 0808 2080 888 support@bloodcancer.org.uk

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Thankyou as ive been wondering that too

I see NHS just issued some initial spring booster info NHS England » Preparing for a successful spring 2023 COVID-19 booster campaign

Is your reading of it that the NHS England online booking system will open 5th April? Or is it that it will open earlier with appointments available from 5th April? Or is it that booking opens 5th April with first appointments from 17th April. It’s not very clear to me (and instructions to GPs that I’ve seen on Twitter seems a bit unclear too)

My reading of Table 3 in the Green Book also suggest that household contacts of people with immunosuppression on Table 3 would also qualify? Is this correct as the NHS haven’t spelled it out in their link as one of the approved groups? Really need to know if my hubby will also be eligible and if he will be able as a household contact to get the jab easily via the online booking system.

Thanks

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Hello @CaroleCW

Many thanks for posting this information, I will be reading this thoroughly and we will communicate to our community as appropriate. In terms of detail, as this was only published yesterday so we will make sure the guidance is clear for all.
On initial reading:
Invitations and booking : The NHS will plan to invite and vaccinate those eligible for a spring booster in time for completion by the 30 June via a combination of local and national invites. Systems should work on the basis that NBS will open on Wednesday 5 April, so bookings from the 05/04 and appointments from 17/04.
Household contacts are included as per Green Book:
Other risk groups
Household contacts
of people with
immunosuppression
Individuals who expect to share living accommodation on most days (and
therefore for whom continuing close contact is unavoidable) with individuals
who are immunosuppressed (defined as immunosuppressed in tables 3 or 4)

@Alice_BloodCancerUK and myself will also make sure we post in the forum space as soon as possible.
Kind regards
Gemma

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Thank you @CaroleCW and @GemmaBloodCancerUK Gemma for posting on this important topic. Am I correct in thinking that those with MGUS would not get a spring booster (I dont see it in Table 3 nor Table 4)?

Best wishes
Helen

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Hi @helenfwallace our understanding is that people with MGUS aren’t automatically eligible for the Spring booster. The decision on eligibility for individual’s with MGUS would depend on whether they’ve been labelled as immunosuppressed/eligible by their GP or clinician, based on their current health status (other health issues, blood test results etc). If the clinical decision is that they are eligible then they would be able to get the vaccine, but this would be done on an individual basis. If you want to talk this through please don’t hesitate to give us a call. Take care, Alice

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I note with interest the questions over MGUS and Covid vacation.
When Covid kicked off I was just below the vaccine age several years into Watch and Wait (lgM). Nothing from GP Medical Centre and after 18months on visting my Heamo Oncologist he was supprised that the ‘system’ had not flagged up that people declared MGUS and were not on the at risk register.
I had 2 jabs and a booster before my NHL Waldenstroms Macrglobulnemia treatment started.
Ironically now my immune system is being hammered by Rituximab and Ibrutinib with no vaccines(covid, flu, shingles etc) permitted until my numbers are OK I’m being inundated with Covid booster reminders.

From my work days I taught safety risk management and the needs to be clear on;
1 Who is in control?
2 With what relevant competence/access to it?
3 and ensure there is good communication cooperation and coordination.

The NHS seems to fail on these. My Lymphoma ‘belongs’ to the Infirmary Heamo Oncologist; my Diabetes etc is ‘Controlled’ by my Medical Centre GP and my broken hip belongs to another General Hospital. Records don’t cross these boundaries or should that be barriers?
Why is the patient the one, if able to do so, to tell the GP his ACE Inhibitor for Hypotension could clash with my Oncologist’s Ibrutinib and kill me?!!!
I’ll remain a self advocate and seek the best competent advice to enable me to risk assess my approach to vaccines.

Apologies for the lengthy ramblings but I consider the lack of joined up thinking be it in general Vaccinations or in specialist Chemo/Immunotherapy/Bio-targeted treatment a high risk, a risk to patients.

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A great big welcome @Iain and I really agree that I am a self advocate and that it is my responsibility to tell all departments/ hospitals/ opticians/dentists etc of my medical history, medications, allergies etc.
Look after yourself, please keep posting and tell us about yourself

Thanks Erica for the welcome. I am you may consider a professional patient. To quote a Haemotologist in my early MGUS days “you’ve been there, done it, got the T Shirt”. He could remember me from 1984 when I had what they now call Classic Hodgkin. Industrial chemicals and radiotherapy. Not nice but effective and I’m still here.
The lurgy I have this time is Waldenstroms. After nearly 10 years of watch and wait my qualityof life started to drop with Aneamia etc. as the lgM paraprotein level increased.
I agreed to go on a 24 week trial using Ibrutinib daily (BTK Inhibitor) along with an 8 IVI Rituximab therapy. Finished the RI regimen in December 2022 and am now on the first 12 week maintenance cycle. 5 more years of trial to go. If toxicity is manageable I’ll be on Ibrutinib till my lights out is called.
The aim of the trial is to determine the use of Ibrutinib as a 1st line treatment for WM which is currently not approved by NICE for NHS use (it’s sometimes used as a 2nd line for relapsed CCL1984 Chemo against 2022 Bio-Targeted treatment are worlds apart.
I carry the standard 24 hour Haemo Oncology telephone detail along with a credit card sized ID Medical Alert/History/Medication Card around my neck. It’s shown ad nauseum to Doctors, Optometrists, Dermatologists, Dieticians etc. So many have not come across Ibrutinib its side effects such as Hypotension, effects on vision, skin issues and much more.

As a T2 Diabetic with Hypothyroid I’m the one trying to be subjective in such symptoms as fatigue is it Sugar, Thyroid, Lymphoma or just too many birthdays.
As a retired Environmental Health Professional and Health and Safety Enforcement Officer keeping records, using calibrated measuring equipment and knowing it could be evidence in Court was second nature. If only all those paper laden files in the NHS got intergrated and accessible to all those that need to know and that includes the patient should they wish.
Should it be of use/interest to fellow members of this Forum I can reflect further on being on this therapy trial
I’m rambling again so I’ll finish there.
Keeping taking the tablets!

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Just wants to say that I agree wholeheartedly that “systems integration” can’t come soon enough! As my GP and specialist hospitals are in different NHS trusts (still in the same county but 25 miles apart), I am the only one to fully “join the dots” and know my entire medical situation, often having to send copies of blood test results or letters from one to the other , or highlight key changes in letters. None of my medical records in my GP or hospital systems are 100% accurate but I haven’t got time or energy to get them fully corrected, I just make sure the important stuff is on record .

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@Iain,
You raised some interesting points about who is in control when your medical records are spread over several hospitals and GP surgeries. In my case a lot of blood tests get duplicated. Cross reactivity between the medications prescribed by different doctors is a problem. I currently carry a list of all my current medications but there is absolutely no way I would remember them all at a hospital appointment or emergency. I always try to read the patient information leaflet before taking a new medication and ask the dispensing pharmacist about any conflicts I find. I find it scary thinking about what might happen if I develop dementia…

At my last Haematology appointment I told the doctor that I had had a change in medications and they didnt want to know. “It won’t affect our test results”. Rather short sighted I think.

Apologies for the rambling

Helen

Helen

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Helen, no apologies needed - I’ve got A level in ramblings.
I like you are analytical in approach and go through all data available to me - “give instruction to a wise man and he will be yet wiser”.
Whilst respectful of medical knowledge I question that flow of knowledge between specialisms. When your daily in-depth knowledge can develop but your core knowledge/experience of holistic health and current practice distances I see hazard and risk.
I’m a positive person by nature but still cautious. I don’t just lay there with an attitude of “doctor heal me” and “they all know it all don’t they?”
If each part of the medical team aren’t aware of holitic issues or specific symptoms, be it by report or patient interface they become Vets not MD’s.

Rule number 1 look after number 1!

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Hi @Alice_BloodCancerUK,
Following on from my original question back on Feb about the eligibility MGUS patients for the Spring booster and my recent post in which I said I had got an invite from the NHS via their App , made an appointment ,but was refused when I attended, I am now wondering if I should re-book. I dont see any newspaper reports of the NHS sending invites out to the wrong people (as claimed by the vaccinator), so may be the invite was right and the vaccinator at the centre I attended was wrong. I am getting horribly confused and stressed about this.
Best wishes
Helen