The UK roll out of community COVID-19 treatment with monoclonal antibodies is failing some blood cancer and other immune compromised patients.

NHS England and the Department of Health and Social Care have been approached for comment.

Some crucial knowledge gleaned from the experiences of others will help you navigate the system, however, as there are also many patients successfully receiving the treatments.

As soon as you get symptoms you are in a race against time to take the antibodies in the first five days in order to keep the disease at bay. For those of us who do not make our own antibodies this is particularly crucial.

The NHS says it will offer a choice of antibodies or antivirals to eligible patients. If you choose antibodies you can however also Volunteer for the Panoramic trial where you have a 50/50 chance of additonally being given antivirals. As they both work in different ways I would personally volunteer do that trial too. It is a remote trial with no need to attend for extra visits.

Video update

Unfortunately the NHS is not well set up to give urgent treatments reliably outside of a hospital setting and at every possible stage the new process could go wrong – it has done for some of us. In particular the roll out of knowledge about this system to the various NHS departments has been less than ideal, you may find yourself dealing with staff who do not know about this. More of that later but first, how to try and make the system work for us. Crucially we need to advocate for ourselves. Don’t be shy of starting your conversations like this (amend this to reflect your own situation)

If you are a patient reading this make sure you are aware of the following in advance of having covid symptoms

• Please be aware that non priority PCR tests are taking more than 72 hours to report results. So what you need is a priority kit and to be on the at risk register which was created centrally from a computer list.
• If you haven’t got a letter informing you that you are potentially eligible for the monoclonal antibodies DO call 119 who are supposed to be able to send you a special priority PCR test, but that DOESNT add you to the at risk register for treatments. When you get the test delivered make sure it has the priority leaflet with it as seen below. Scandalously at the moment 119 claim to be unable to send out such priority PCR kits despite official NHS communication saying they can. Do call them and ask them to log a complaint, however, as this will help them sort this issue out.
• We suggest you also talk to your GP, your hospital, your CCG and NHS England. Please let me know if you manage to get yourself onto that list as nobody is clear on how to do it. I have been told that the
• Hospitals can apparently arrange to have a priority PCR sent to you. They have a way of ordering this from the internet which —might— work. I have tested this with my hospital and we will see if this works. May nurse also said that if I got COVID and had no other way to get an urgent PCR done to come down to the specialist hospital (I am guessing A and E) and they can physically do a priority one there. However what arrived was a normal test sadly. Am grateful she tried. She also tried to reassure me that when she emails referrals to the community treatment units people generally get an infusion the next day…. I hope she is right!
• Please note the Panoramic trial are NOT able to send PCR tests out and have nothing to do with the at risk register although some people at other parts of the NHS have said they are.
• It seems that the at risk register was created by looking at SNOMED codes so it is worth asking both your GP and hospital to check if your records are correctly coded.

NB you can still use all the steps below even if you don’t have the letter.

• Aim to have one of the special priority postal PCR tests at home to take and send off via a priority post box. At the weekend you can call 119 to arrange a courier pick up. 119 should in theory be able to send one to you if you didn’t get it. BUT some of these postal PCRs are not getting prioritised properly, and you do have the delay of relying on postal services. You will know if your have a priority test (which should be sent back via a priority post box after activating it online) if your PCR has this leaflet in it and it’s number next to the bar code starts with the letters “AVA”

• Consider using a drive through PCR test appointment instead of a postal one (especially if you aren’t sure your PCR test is a priority one) as this may give faster results. At this point we are not sure if it’s possible to ask at the test centre or via 119 for them to prioritise your test results but it’s worth telling the staff you are at high risk.
• If you don’t get a satisfactory answer from any of the departments you can ring back as people are getting different answers from the same bodies depending on who they speak to.
• Prior to catching covid, try and get your covid antibody levels tested in response to the vaccine so you know (and can tell others) that you are at even higher risk because you don’t have antibodies of your own. HOWEVER, monoclonal antibodies may still help you as an immune compromised patient EVEN if you have antibodies of your own. Some patients with blood cancer who have good antibody levels may still get severe disease.
• Consider doing regular LFT tests even if you don’t have symptoms and if you test positive then get a PCR done. Note that your five day window starts from the start of symptoms not the first time you test positive on lateral flow so this could buy some valuable time (you might have your positive PCR before having any symptoms).
• NB you can still have COVID19 even if you test negative on LFT. So still send a PCR test if you have symptoms.
• If you get a positive lateral flow test DON’T wait for your PCR result before calling your hospital clinical nurse specialist. Explain PCR tests are taking days to come back and ask them to e refer you for your antibody treatment anyway. Meanwhile do try and get a PCR test. That way if the CMDU delay returning your call who knows maybe you have a PCR result in time.
• If you get a positive PCR result don’t just wait for days to be contacted. Call each of the following to try and facilitate a prioritised referral for the appropriate treatment – 111, your GP, your hospital specialist nurse. If anyone you speak to doesn’t know what you are taking about, here’s the list of covid antibody community treatment units. A secure email referral to them from your GP, 111, or your hospital should result in a phone call back from them to you. There is no point in trying to refer yourself to one of these units as it requires a professional referral to them. In theory if you are in the right list somewhere then you will be automatically referred. But at this point nobody can explain to me how to get onto that list if you didn’t get the letter BUT you can get referred in.
• If you get no joy from any other route some patients have simply taken themselves to A and E and have then been treated in hospital with the antibodies or referred to the community units. Most A and Es can do a priority PCR test on the spot. This is not the best route as it ties up valuable NHS time BUT especially if you are getting symptoms it can also be reassuring to be assessed. If your symptoms are worsening then A and E is also a route to other inpatient treatments. If you are under a specialist hospital you might consider using their A and E, this might be suggested by your clinical nurse specialist. Crucially you are not to be treated by standard COVID protocols but under the understanding you are immune compromised and at high risk. If possible it might be good to be treated in a hospital which has lots of experience of dealing with immune compromised. If you need to be treated at a local hospital you can definitely still ask your specialist CNS for telephone advice so you can talk to your doctors about treatment options.

I am writing this with great concern, but in the hope that some people may read it and be able to do something about it. If you have experienced any other issues do let us know. The rest of the post reports issues being discussed on patient forums.

Problems with the system

• The criteria for who gets antibodies may have been opened to too many people, meaning that those who really need it are unable to get it. Crucially if you don’t make any antibodies in response to the vaccine you are at even higher risk, but the failure to measure our antibody responses means this vital measure is not part of the criteria.
• Some people have received a letter explaining they may be eligible for antibody treatment when they don’t meet the published criteria. The community treatment centres are being swamped as a result with one reporting they had 400 priority referrals in a day.
• Some people who should be on the list have not been sent one of the letters.
• The priority PCR tests are not being sent out to eligible patients whilst some people have received one without getting the letter and the pack doesn’t explain why they’ve received it.
• Some people are being told by automatic messages to immediately take the PCR test they’ve been asked to keep to hand for when it’s needed.
• PCR test appts can sometimes be hard to find and neither those nor lateral flows are prioritised for us.
• PCR results can take crucial days at times to come back meaning this delay can make it too late to have the treatment and so it’s crucial for us to have the priority kits.
• Some professionals aren’t referring to the community treatment units and the units themselves are not sometimes not responding quickly enough meaning it is too late to give the treatment for some patients. I know of one person who waited four days for a call after their doctor referred them to a unit.
• Some 111 and 119 operators, GPs, and even hospital staff sometimes say they know nothing about this new treatment. Refer them to this link for the official NHS guidance or the letter sent to GPs (which doesn’t say how to add someone to the at risk register!)

Read more

https://www.england.nhs.uk/coronavirus/publication/assessment-monitoring-and-management-of-symptomatic-covid-19-patients-in-the-community/

Scotland has a slightly different process read more here:

https://www.nhsinform.scot/illnesses-and-conditions/infections-and-poisoning/coronavirus-covid-19/coronavirus-covid-19-treatments?fbclid=IwAR0VNL7KMnTzs16-0IIRxRQnJnkSMT0nZSS-_Duh0uLZGlSgMqMQ7iav6Qk