Access to nMAbs & Antivirals

Good idea about MP; if I thought our MP would give a d**n I might do the same - but previous contact tells me this would be a waste of time! Good luck.

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My local MP, Marsha de Cordova was initially quite helpful in relation to the 3rd vaccination issue but seemed to lose interest. Perhaps not enough political mileage in it.
It would in the meantime be useful to hear from BCUK regarding my earlier question about prioritisation of testing of PCR tests for those eligible for treatment and also what steps their Policy team are taking in regards to raising this issue with the NHS and the Department of Health. The welfare of blood cancer patients in a pandemic you’d think would be a prime concern especially given the highly disproportionate level of deaths.
I will let you know what the response is from Vicky Foxcroft’s office.

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Hi @Paul good question. The PCR tests being sent out to immunocompromised people with the letter are priority tests.
Anyone who thinks they should be getting a letter and one of these PCR tests through the post but hasn’t, could share this letter to Healthcare Professionals from NHS England, with their GP and/or clinician - C1503-i-letter-contacintg-patients-about-new-covid-19-treatmenets-non-hospitalised-patients…pdf (england.nhs.uk)

More information about eligibility and the processes after a positive PCR test, can be found here -
Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK

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Hi @Ruth thanks for flagging, we are aware of this. We are in close communication with NHS England about the process and are feeding back to them the struggles people are facing at the moment , so they can ensure any issues are corrected as soon as possible. I hope your husband hears back from his practice soon. This letter may be helpful to share with them and may assist in your conversations - C1503-i-letter-contacintg-patients-about-new-covid-19-treatmenets-non-hospitalised-patients…pdf (england.nhs.uk)

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Thanks for your response. Emailed Practice Manager on Thursday and she came straight back to say she’d passed to a doctor. I’ve also drafted letter to go to husband’s haematologist in case he can add his weight.

I noticed something whilst drafting the letter: from March 2020 to September 2021 Robin got enough letters saying he was CEV to paper the walls! But then in September he got the letter saying shielding had ended - and not a word since. He never got a letter to say he needed a third primary jab; he managed to get one at surgery (and is booked in for booster in a couple of weeks) but no official letter.

It’s as though the system changed when shielding ended and all these people have somehow dropped off the CEV list!

I’ll let you know what response I get from the doctor.

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My specialist nurse told me they have nothing to do with the process of getting access to antibody/antivirus treatment… I have rung NHSE, 111, 119, my gp both the doc himself and the admin staff, my local NHS Trust and finally my MP. The MP says its worrying I haven’t heard abt a a fast track test kit. And he will look into it, theNHSE said it is definitely down to the gp to add the appropriate code to be added to the NHS data base so I can be considered for treatment in a CMDU and if they don’t know how, to contact their area management team… All the others didn’t know… And now the news programs and the government are saying no one needs a 4th vaccination (Do they mean us too?) … I am just so worried about the whole treatment access debacle and hoping against hope my MP does get things done and soon as omicron is romping through the population

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I thought the same of my MP… He has taken more than 6 months to write back to previous email I have sent him but I did email him last week about not having a priority PCR to keep by me as yet when the deadline was supposedly 10th Jan. And I was surprised to get an email by return promising to look into it and confirming that as I have blood cancer and have had anti CD 20 meds in the last 12 months I am definitely eligible. He said he will look into why I haven’t heard and try to get my name and NHS number into the nhse database… So very promising… It may well be worth your while to send yours an email… Nothing to be lost is there? :blush:

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I’ll add that to the list of options. Our MP is John Deadwood …. sorry, I mean Redwood :joy:. He has a very patronising assistant who seems to head off all communication at the pass, so unlikely to ever get past her unfortunately!

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Oh @Ruth what a good use of my reams of similar letters pre Sept 21, waste not want not and all that. Perhaps we could made fashion statement walls and start a new trend.
Yes, please do let us know the response from your doctor.
Look after yourselves.

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Hi @Annie78, please do let us know how you get on with your MP. It really is a battle that having blood cancer we shouldn’t have to fight and health wise is all too much for me anyway.
Look after yourself

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One thing that concerns me is that, if they don’t sort out the root cause of this problem (ie why these people have dropped off the lists), it’s going to keep happening with future things. For instance if prophylactic antibodies are ever authorised, or another vaccine/booster is required, all the people who haven’t had the letter/test this time are going to be going through the same fight again & again.

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A very good point made @Ruth

That’s really promising @Annie78, have you heard anything back yet?

Regarding 4th vaccine doses, the JCVI advice is that adults and children aged 12 and over who are severely immunosuppressed should have three primary doses of the covid vaccine, followed by a booster dose (a fourth dose). You might find this page useful to read through - How to book a covid vaccine if you have blood cancer | Blood Cancer UK but as always, we’re only at the end of the phone or email.

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Hello all, I just wanted to flag on this thread that the eligibility section of this webpage has been updated to reflect updated guidance - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK

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Well, still nothing from the doctor; Practice Manager referred to him on Thursday … maybe he’s looking into it, maybe it’s at the bottom on a very big pile? Who knows! So a similar letter now gone off to husband’s Haematologist; unfortunately we have no email address for him and a phone call would only get through to his clinic, so a letter seemed the best idea.

We’re both starting to lose a bit of patience now, so emails to our MP and Sajid Javid will be going off shortly. After that I’m thinking that the BBC Journalist (Radio 4 5pm News) who ran a lengthy news item last week on the administering of nMABs might like to hear what a huge mess this rollout is proving to be. Maybe a bit of publicity would get a result?

I was going to ring 119 and try and get a priority PCR testing kit, but that seems pointless because everyone today seems to be being told they don’t have any priority kits - and the standard ones are taking up to 4 days for results.

Have you managed to get your booster yet?

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Hi Everyone hope you are all doing okay.I live in Scotland & have received a letter from the Govt zgiving me advise on Antivirals ,if I was unfortunate enough to develop covid .They informed me that a dedicated help line within my health board operating 24 hours a day is available for contact specifically re the anti virals .The instruction are to contact this number if any signs of covid occur.It stated I would then be given the necessary info to obtain either oral or IV a doses of the anti virals.Ihave splenic marginal lymphoma &have had my spleen removed.Wonder if you could obtain info from your health board .Good luck hope this comment helps ! Ann

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Hi

I sent a letter to NHS England on 23rd December to ask why as a Chronic lymphocytic leukaemia (CLL) patient and it being a condition on their list of eligible conditions to receive Priority PCR tests and access to the Covid treatments (antovirals and Monoclonal Antibodies) I had not received anything. Also, asked how I was supposed to get this letter and the PRIORITY PCR test Kits. Their reply was …

Thank you for your email.

If you think you may have one of the health conditions which makes your eligible and you have not received a PCR testing kit, you can request one by calling 119, selecting the option for Test & Trace, and telling them that you think you might be eligible.

You can also request a PCR test kit to keep at home by going online at Get a free PCR test to check if you have coronavirus (COVID-19) - GOV.UK. For the question, ‘Does the person who needs a test currently have any coronavirus symptoms?’ you should answer: ‘No’. When it asks ‘Why are you asking for a test?’, select ‘I’ve been told to get a test by my local council, health protection team or healthcare professional’, and then select ‘A GP or other healthcare professional has asked me to get a test’.

Otherwise, If you think you may have one of the health conditions which makes you eligible but you haven’t received a letter, you can contact your consultant or GP practice if you test positive to discuss whether you might be in the highest risk group. If they feel you may be eligible, they will be able to make a referral for you so that you can be considered for treatment.

I hope this information helps.

The NHS England Customer Contact Centre are unable to provide any further information or guidance on this subject and are therefore closing this case."

I have contacted my Haematology department and GP to try and get on the at risk list with no success as yet. I called 119 and they did eventually agree to send me a PCR test kit for at home use but have no access to priority test kits. They said that was NHS England who were dealing with that. But obiously from NHS England’s reply above they think it is down to 119. No one is taking responsibility to sort this mess out as far as I can see.

What do I do now? How do I get a Priority PCR test kit as the standard ones are taking around 4 days to get a result in some cases so would mean you would be too late to get treatment.

My haematology team have been helpful in saying as soon as I get a +ve PCR test restul to contact them directly and they will set of a process to get the anitvirals or antibody treatment. So that is a relief. Just need the PCR testing to have a quicker turnaround.

Thank you BCUK for all that you have done so far and for collating more cases to highlight these issues higher up and hopefully get some resolution. I hope you can get somewhere with it soon.

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I think the truest words there are “no one is taking responsibility to sort this mess out as far as I can see” …… everyone seems to think it is down to someone else. We’ve moved onto MP and Mr Javid - because he seems to think this is all going so well :rage:

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Hi @Ruth, @Thelimes and @Beebusy you certainly are having a fight aren’t you.
I was at the GP nurse for something else and I have managed to get my 4th/booster booked with them next week.
I have just ordered a priority PCR testing kit for me and my husband on line via the link on the priority letter I never received.
I also checked my status at the GP now that the Clinically Extremely Vulnerable category was scrapped in the autumn. I am Covid high risk.
Yes, everything is a stressful fight and I am fatigued with it.
Hang in there and look after yourselves and take care.

HI,

Would you be able to share the link for ordering priority PCR test kits as 119 can only send out standard ones.

I have contacted my GP about checking that I am coded as High Risk for Covid but am still awaiting a reply. I wont hold my breath on that one.

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