I thought I would share an update on my previous post on navigating NHS chaos in regard to getting the monoclonal antibodies and antivirals. This is based on replies I have received from a number of emails I have sent. I know many others are equally frustrated with the misinformation and denials by official bodies.

This is potentially a matter of life and death. Recently I read in the Guardian that Blood Cancer UK has calculated that 3000 people with blood cancer had already died of Covid19 before the omicron wave. This is more than 1 in a 100 of the blood cancer family already wiped out by this disease. This despite all the shielding many of us did. Sadly many more are likely to die if we do not fix the problems with monoclonal antibody roll out. Whilst many of us will recover fine even without treatment there is no way of knowing for sure who that will be so many of us with blood cancer are definitely included in the group who will benefit from monoclonal antibodies. Hopefully the vast vast majority of us will be just fine if we take this new treatment in a timely manner and the quicker the better since treatment in the first 24 hours is faster.

It took a year for the NHS to finally roll out monoclonal antibody treatments after the USA and they still cant get the roll out right! Meanwhile the USA is already giving preventative monoclonal antibodies when will we get them? Unlike the vaccines for everyone they are being very slow to roll out treatments just for our group. Why is there no sense of urgency to save our lives?

In my previous post I explain which groups of blood cancer patients are meant to be eligible, but some doctors including some at CMDUs are making up their own rules. One lady was told for example CLL wasn’t on the list when it clearly is at any stage. Here is the official list.

First up what to do if you want to get outpatient treatment, have your plan set up.

1. Realise you are in a race against time and a standard PCR test is likely to be too slow. Ask your hospital Clinical nurse specialist NOW if they are in a position to offer urgent on the spot tests at their hospital. At least one are testing cancer patients in the car park. Others will test them in A and E in order to ensure a result in hours not days. Best to know where you can get this done. As soon as you get either a positive Lateral Flow test or COVID symptoms get an urgent PCR done.
2. Remember that the automatic referral system will NOT work if you have not been sent a letter. As soon as you get a positive lateral flow test or covid symptoms ring your hospital specialist nursing team (check you have an out of hours number), your GP or 111 and ask to be referred by secure NHS email to your local Covid Medicine Delivery Unit. Many of these are NOT working at the weekends robbing you of two of your five days window! Do not take no for an answer and do not assume that you will be referred automatically. Note that being immune compromised by having a blood cancer is sufficient reason to be referred. My previous article has the full list of those blood cancer patients who will definitely be given priority treatment, but some others may also be included at medical discretion. Essentially recent treatment for any blood cancer will qualify and/or having a more chronic lymphocyte based blood cancer (e.g. CLL and lymphomas) which should be included no matter what stage. Staggeringly some GPs and some consultants are refusing to refer people either because they dont know they can or because they think they know better than the national guidance. If someone pulled that on me I would ask them to put it in writing so I can refer them to the GMC and also so I or my estate can sue them for unjust suffering if I got hospitalised or worse.
3. Consider also referring yourself to the PANORAMIC trial for a chance of getting antivirals in addition to your antibody infusion. This is my own plan for sure.

Summary from Leukemia Care

Its important not to shoot the messenger here, but this reply to me from Leukaemia Care, which aims to summarise the situation as they have been told, brings me to despair and despondency:

Unfortunately, there is no list that you can be added to, unlike the shielding list or vaccine eligibility. The NHS conducted one exercise where they identified people to write to, but they are not updating that on an ongoing basis as they have in the past. This means that there is no way to generate the letter nationally, only via a specialist clinician, and no way to get a priority PCR test kit that we know of.

We clarified with 119 today. They can give out kits and that is why we keep telling people to call them, but we still aren’t sure if these are priority kits and we are pushing for them to be changed to priority ones.

Email from Leukaemia Care

More information from Blood Cancer UK

This wonderful organisation are likely to keep updating their website which is a great place to go for information. Their current advice like anything official is actually not helpful on one point as they do not suggest going to a hospital to get a truly urgent test done. But that is not what the NHS are saying we should do. So I suppose Blood Cancer UK can’t give out unofficial advice the way a website like ours can. But they do explain the treatments themselves well so it is definitely worth a read.

Their line about “ask about the quickest way to get a result” perhaps hints at the idea that hospitals may be willing to do these tests. I suspect that most A and E’s would struggle to refuse to do a PCR for a blood cancer patient who turned up worried they have covid and desperate to get the treatment organised. They can also refer you there and then to the CMDU. Anyway here is what Blood Cancer UK say and some links to official documents from their site:

Also please do fill in this Blood Cancer UK survey as they are looking to gather as much data as possible about the problem so they can continue to advocate for us:

Helpful reply from my clinical nurse specialist at UCLH. The only helpful person I have dealt with on this issue from NHS or other government bodies

Our general manager has been consulted again. She tells me that UCLH really haven’t had anything to do with this process. It is being managed by NHSE and we were just asked to send letters to our patients as an extra contingency so patients were not missed. We have no control over the rapid PCR allocation process. She suggests you take this up with NHSE.

In the meantime, as I’ve said, contact me if you develop any symptoms. Routes to rapid PCR are Macmillan cancer centre (I’d book you into the swab pod outside the back of the centre) or any hospital A&E if out of normal hours ie weekends or bank holidays. The A&E departments, 111, GPs or hospital specialists are all able to refer patients to CMDUs to access treatment.

Email to Adrian Warnock

Mostly helpful reply from a CMDU. Unlike some this one DOES open 7 days a week!

If you contact 119 they will be able to provide  you with a rapid PCR kit if you are eligible. We are open at weekends but we can only accept referrals from a Healthcare provider or NHS portal rather than from the general public. We would be able to take out of area patients if appropriate.

Yes, I am aware that some GPs remain unaware of the service despite a plethora of comms going out. Locally we are attending GP educational events to try and increase knowledge and awareness of the service.
If you did become ill while out of area the best thing to do would be to get your GP/consultant to email this address and then we can go from there.  We would need to know the date symptoms started and the vulnerable patient category that you fell into. We could then liaise with them to see if the treatments would be appropriate for you.

Email to Adrian Warnock

Apart from the advice to contact 119 for a rapid PCR test kit which they are NOT sending out this was a very helpful reply.

I am now going to share some misleading and dangerous replies you should NOT rely on. We deserve better than this. You can also use these replies to help you make your own calls and complaints about this issue as many of us are determined to get to the bottom of this issue and resolve it.

Misleading answer to question in Parliament by minister Maggie Throup 

I thank the hon. Gentleman for raising this important part of our strategy to make sure we can react quickly in respect of those with certain conditions. Giving them ready access to the antivirals is the third part of our strategy to combat coronavirus. GPs and hospital consultants should link up to make sure that the right conditions are considered. I advise the hon. Gentleman’s constituent initially to contact her GP to make sure that she fits the category. If she has received the letter but no PCR test, she should contact 119—Test and Trace—

Source: Hansard

Misleading information: 119 are NOT sending out priority PCR kits even for those who got the letter and never got the kit, and certainly not for those who got the letter. Also it is NOT just antivirals we need but monoclonal antibodies which have the better research basis. Finally NHS are refusing to update their list of specific patients eligible for the new treatments saying that there has been no error, so there is NOTHING that a GP or a hospital consultant can do even if they BOTH agree the patient fits the category. Maggie Throup’s reply is basically completely false and dangerous and will lead to much frustration if you try and follow it (though of course we do all need to chase our GP, consultant, NHSE, CCG, NHS digital, 119, and anyone who will listen about this till somebody does!) Ministers should NOT be allowed to lie to parliament like this even if they believe at the time they are telling the truth.

Unhelpful reply from my MP

I will forward your email to the Minister of State for Health and Social Care, however, the department is overwhelmed at the moment and this may take several weeks.

Letter to Adrian Warnock

Clearly no sense of urgency. With so many people catching COVID at the moment many of us will die before the Department bothers to reply. MPs are meant to advocate for us. So do contact your own MP and ask for them to fight on your behalf to save your life.

Unhelpful reply from the Department of Health and Social Care

I would advise contacting NHS England.

Email to Adrian Warnock

Misleading replies from 119

Like many other patients, I have tried to call 119 multiple times to get a priority PCR kit sent to us, as suggested by the letter sent out to immune compromised, which told us to call them if we didn’t get one of the kits sent to us. The replies on the phone I have heard personally or reported by others include all of the following

• Promising to send out a priority PCR kit as requested but what arrived was just a standard PCR kit. This is especially dangerous as people may think they have a faster kit when they don’t.
• Telling people who didn’t get the letter to just wait 24 hours after a result and they will get a call from the CMDU (they WON’T and should arrange a referral from another health professional)
• Confirming that the priority PCR kits have a red label and a bar code that starts with AVA
• Confirming that normal PCRs are taking in excess of three days to report meaning they will be too slow
• Denying that priority PCR kits even exist
• Claiming that all PCR kits are processed in the same way and the priority ones don’t get done quicker (not true!)
• Saying that your hospital can give you a priority PCR kit (not true, BUT they can usually do one in the hospital)
• Saying that your GP can give you a priority kit
• Thanking the caller for explaining why the call handler had themselves been sent a priority kit at home as they were immune compromised themselves
• Claiming that normal PCRs can be sped up to priority ones after they have been sent off (untrue I believe)
• Offering to courier your PCR kit back so it is faster (I think they can do this)
• Just hanging up as soon as someone mentioned priority kits.

You can call 119 and press the code for track and trace and order a kit, then PCR, then ask them if they are able to send you a priority PCR kit yet. You can also raise a complaint but don’t hold your breath I was told they wont reply for 25 working days!

Misleading advice from local CCG based on advice from the UK Health Security Agency (previously known as public Health England)

I have been in touch with the  UK Health Security Agency in relation to priority PCR tests and the  Senior Regional Coordinator for  the East of England has provided the following information

There were priority PCR tests that were sent directly to high risk patients, however for people who did not receive one of these tests the current  advice is as follows.

“119 are currently unable to order antiviral priority PCR tests on behalf of users. Therefore, any user who:

a.       expected a kit that never arrived (missing)

b.       received their kit then lost it (lost)

c.        received kits with broken or missing parts (faulty)

d.       recently been diagnosed with a condition that makes them eligible (new members)

should be directed to 119 who can send a standard PCR home test to their home or book an appointment at a walk-in or drive-through test site for them. Or order / book themselves via https://www.gov.uk/get-coronavirus-test.

If they already have symptoms 119 advise users that it may be quicker to test at a test site if there is a same day appointment available “

Source: email to Adrian Warnock from his local CCG

Misleading information A standard PCR kit is NOT sufficient as the results are currently TOO slow to allow us to get treated especially as some CMDUs are NOT WORKING at the weekends eating into the five day window. Note that there is also NO thought given as to how to get onto the proper at risk register to allow automatic referral to the CMDU nor is there any warning that patients may need to be referred if they are not on the list (i.e. they didn’t get that initial letter)

My reply to the above email was as follows and has not been answered:

This reply is a scandal. 
The non priority test kits are NOT fast ENOUGH  for us to get a quick result and then qualify for the monoclonal antibody treatment which MUST be given in the first five days of a covid sickness, which means that an NHS computer error (not sending the right people priority kits) has condemned people to death. This is utterly appalling. 
This is a major critical incident that   needs to be reported at the highest level and dealt with. Imagine a GP who didn’t send their chest pain patient to A and E to get an ecg done to see if it was a heart attack, but instead send them to a standard ecg appt. They would rightly be stuck off. 
And of course on top of the fact we are being condemned to be at higher risk of death we are also being condemned  to  hugely increased anxiety about this. 
How will you feel reading an Obituary of a patient who was given a standard PCR kit, missed out on monoclonal antibodies and dies as a result. This is not acceptable. 
The only correct advice for someone who doesn’t have a priority PCR kit is to go to a hospital which can do an on the spot truly urgent PCR so they can immediately qualify for treatment  at the CMDU.   
But this problem must be properly solved. 
It doesn’t even stop with access to the PCR. Because we aren’t on the list we won’t be automatically referred to the CMDU and so are at the mercy of health professionals  we speak to, knowing they can refer anyway. I’m hearing patients whose GP or even 111 say it’s not possible they’ve not heard anything about it. 
I have never felt more betrayed 

Adrian Warnock’s reply to his CCG

You can contact your own local CCG and/or call the UK Health Security Agency at  0300 303 8537 and select option 9. I asked for a manager to call back as part of a complaints process as this advice is incorrect and putting my life and others at risk.

Misleading reply from NHS digital (responsible for computerised lists and so presumably responsible for making the new at risk register for those whose immune systems make them more liable to COVID19

Thanks for getting in touch, I’m afraid you have come through to the wrong press office.

This relates to clinical policy so your enquiries need to be directed to NHS England and/or Department of Health and Social Care.

First reply to request for media comment for this website

This followed by

I have spoken to the team and they have confirmed there are no computer errors – your enquiry does relate to the clinical policy side of the cohorting which is led by NHS England so I’m afraid you’ll need to speak to them.

Second Reply

Misleading information: Clearly there has been a computer error, but well, better to pretend there hasn’t I suppose.

You can raise your own complaint by emailing enquiries@nhsdigital.nhs.uk with stage 1 complaint in the title of the email. I did this but got no reply whatsoever.

Misleading reply from NHS England

A list of medical conditions has been used to identify patients who may be eligible for treatment,  if they test positive for COVID-19 via a PCR test. Each condition is allocated a SNOMED code which is then placed within a patients’ medical record. In order for you to have received the letter either via email or post, one of these codes needs to be within your medical record. Only your GP or Trust specialist can access your medical record to ascertain whether the SNOMED code/s have been placed onto your medical record.

I would suggest contacting your hospital specialist to confirm this information and they in turn should be able to issue you directly with the required documentation. 

Email to Adrian Warnock

Misleading information This email suggests that this error has been the result of mistakes in coding made by GPs and hospital consultants. Whilst it is true that many of us may have been left off the list for this reason, it is definitely not the only reason as I know my own notes are correctly coded but I was missed off. Also many of us were correctly coded for the previous CEV list on the basis of our diagnosis codes, so it is obvious a computer error has occurred centrally and many have been missed out even with correct codes. Also, whilst it is a good idea to check with your GP and hospital that your notes are correctly coded, this reply might suggest to you that doing so will get you on the list and a priority PCR test sent out. This is NOT the case as NHSE have elsewhere said they are NOT going to correct the list, nor re-run a coding exercise, nor send out any more priority PCR kits. SO simply getting your note recoded is not going to help you and nothing in this advise tells me what I need to do NOW to ensure I get access to the treatments needed (see my own advice at the top of this article)

You can email your own complaint and comments to england.contactus@nhs.net 

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