Lessons from The Covid-19 Pandemic
The arrival of the Covid-19 virus in March 2020 brought with it new challenges for patients with Pernicious Anaemia and their families and friends. The most serious problem centred around patients accessing their treatment – treatment that they need to stay alive.
There was and is an underlying problem with patients receiving treatment according to their individual needs, the usually strictly implemented ‘one size fits all’ can cause serious problems to the everyday lives of patients who are being under-treated, and the ‘feast then fast’ treatment needs to be addressed.
And so, after taking so many telephone calls from distressed patients, I have been reflecting on the problems with treating Pernicious Anaemia, and so I highlight the various issues that are causing so much hardship. The following relates solely to the United Kingdom.
Here’s a rather sad note that I bought off eBay:
Dec. 7, 1908
My Dear Cousin,
I have to thank you for your kind letter of sympathy with me in the loss of my dear wife. She has been ailing for over a year, suffering from what the Doctors call ‘Pernicious Anaemia’, and it seems to be a disease which is almost impossible to cure. She managed to get to Silloth in the middle of summer and got a little better at first, but soon fell away again and grew gradually weaker. Jon has not seen her since Uncle Tom’s funeral at Silloth, I think I will be through Oulton occasionally, and when the days get a little longer I will take an opportunity to call on you some time.
I have that note, beautifully written on card that has a black border to it. Richard’s wife ‘fell away’ because she had been diagnosed with Pernicious Anaemia and there was, at that time, no cure for the disease. And how had she been diagnosed? Well, there was no serum B12 test at the time (it would be another forty years before B12 would be identified) and there was no Schilling test or Intrinsic Factor Antibody Test – so the diagnosis of Pernicious Anaemia that poor Mrs. Birkett died from was made simply on symptoms and perhaps a blood film examination.
I have another account from around the same time as Richard lost his wife, that is written by a Canadian physician which is a sort of diary of how he treated a male patient with Pernicious Anaemia. I say ‘treated’ though all that was at the doctor’s disposal was iron tablets that did nothing to prevent the poor man from eventually dying. It’s a sad tale of trial and error by the doctor to do something for his patient but nothing that was tried worked.
It would be almost twenty years later that American doctors discovered, quite by accident, that feeding raw liver to dogs could ‘cure’ the canines’ induced anaemia (they made the dogs anaemic by bleeding them). They then started to feed patients at first, regurgitated hamburger meat, and then liver and other offal to those who had been diagnosed as having Pernicious Anaemia. Presumably some patients lived, although I have not been able to establish just how successful this treatment was. During the next decade the practice of feeding slightly cooked liver and other offal to patients diagnosed with Pernicious Anaemia spread to developed countries, though there don’t appear to be any statistics relating to how successful the treatment was in these countries either.
Let’s look at the current treatment which is 1mg of Hydroxocobalamin that is injected intramuscular every three months, usually by a nurse. This injection used to be given every month in the 1960’s and early ‘70’s but was changed to every two months in 1974, and then to every three months in 1984. I have been unable to find any scientific data that would form the basis for this change, and neither have the BNF1 been able offer any.
Why Injections? Because patients who have Pernicious Anaemia are unable to absorb B12 from food, they need to have their vitamin B12 replaced by external administration.
Anyway, why am subjecting you to this history lesson? Well, because Pernicious Anaemia is a fatal disease. It kills unless it is treated using replacement therapy injections. And yet some doctors, and nurses it has to be said, often stop the injections that are keeping their patients alive. And there are a number of reasons for this.
‘Feast and Fast’
Firstly, and this is the most common cause that I’ve heard of, the patient is often undertreated and subjected to the usual ‘Feast and Fast’ treatment regimen where he or she gets a large dose of B12 and is then expected to wait for three months until the next treatment is given. And, as so many patients report, he or she will start to experience a return of the symptoms of the disease in the run-up to the next injection. So, the doctor will then ask for the patient’s B12 to be evaluated and 99% of the time the patient will still have levels that are over the lower threshold for any deficiency. This leads to a number of knock-on effects; he or she will be told that their levels are too high and therefore no injection will be given when it is due and the patient has to wait for six months for another test. The hapless patient will probably be told that the test result proves that the need for a sooner injection is a placebo; and that leads to the patient starting to doubt his or her own intellect – perhaps they are imagining a return of the symptoms after all, perhaps he or she really is a hypochondriac? This despite the fact that the BNF states quite clearly that once the loading doses have been given and the patient’s B12 levels evaluated just to make sure that the injections have worked, ‘no further testing is necessary’.
A second reason for stopping injections relates to costs. Vitamin B12 is mass produced on an industrial scale (two plants in China and one in France) and due to economies of scale the actual vial of the injection is very cheap considering its miraculous life-saving quality – it’s around 30-50p per vial. It’s the cost involved in taking up the nurse-time in giving the injection is what costs the healthcare system – usually quoted as between £10-£20. And nurses give an awful lot of them – one medium sized practice has told me they give at least 5-a-day which adds up to over 1,500 injections per year, and that’s just one practice, at £10 per injection in nurse-time that adds up to a cost of £15,000 per year. Now, if you have an accountant’s eye you would see that figure and think of ways in which that figure can be brought down. If you are a patient with Pernicious Anaemia, you’d think it’s a figure that is not only money well spent but is an essential part of everyday healthcare.
There are, of course, ways of reducing that figure without compromising the treatment of the patient. Self-injection is one way forward, though the currently prescribed treatment in the UK is licensed only for intra-muscular and some patients might find this difficult to do. One way of getting painless, or near-painless intramuscular injections is to use an injector pen which I know some patients do use. Or what about all the other delivery methods that some patients use to treat themselves between injections – sub-lingual tablets, sub-lingual sprays, skin patches, ointment, nasal sprays etc. Nobody has evaluated the efficacy of any of these alternative delivery methods none of which involves a nurse’s time. Nor does oral tablets, very high strength oral tablets of 1, 2 or even 5mg strength. Yes, these do work for some patients – some but not all, just as the raw liver diet probably helped those hapless patients being treated in the 1920’s-40’s. And yet, I know of patients who have tried the tablets either from their own choice as they don’t like what can be a painful injection, or on the advice of their physician. Some patient’s serum B12 will increase but they will still suffer from the symptoms of the disease whilst other’s serum B12 refuses to be raised leaving their doctor to insist that he or she must have injections. There is scope for a real win/win solution to the problem of patients being undertreated though some thorough research is needed to avoid any nerve damage or worse. If you are contemplating using any of these alternative treatments please discuss this with your doctor before doing so.
Let’s go back to what we have learned from the current Covid-19 pandemic and the treatment of Pernicious Anaemia. Because of the very real problem of patients’ unwittingly being the cause of cross-infection to front line nurses when they turn up for their regular injection, the surgery will simply decide that no injections will be given during the current pandemic. That’s it! No More Injections for the Foreseeable Future. I am amazed and saddened to hear that often patients will be told this not by a telephone call but by text message or email which doesn’t allow for any meaningful discussion between the patient and the doctor. And when this has happened the patient is suddenly very frightened because not only will he or she have to endure the worse effects of the symptoms of their disease returning, but also, they will know that they risk developing serious and irreversible nerve damage or worse. And so, this is the first lesson that we have learned – individual GP surgeries are autonomous units that can and do make decisions without taking into consideration the needs or views of their patients. Of course, not all GP surgeries have taken such drastic action. We know that some surgeries have simply continued to provide the patient’s treatment – some requiring the nurse to go to the patient’s car and giving the injection through the car window, others using PPE, others just admitting one patient at a time. Others have simply prescribed the injection, provided syringes and sharps boxes and demonstrated how the patient can give him or herself their injection.
And that’s the second lesson, there is no consistency in approach to how patients are treated.
And there’s a third lesson – and this one came as a surprise to me. There’s no one protocol or Guideline that doctors can turn to for help on dealing with the pandemic and treating Pernicious Anaemia. There are guidelines from individual governments and governing bodies, guidelines from the British Society for Haematology (BSH), guidelines from the RCGP, guidelines from the Clinical Commissioning Groups, guidelines from Trusts, guidelines, guidelines and guidelines. And so, what’s wrong with this. Well, if they all stated the same information on what to do then there wouldn’t be anything at all wrong with this – but, unfortunately, they all state different things. For example, the initial guideline from the RCGP stated that ‘where appropriate’ patients should be instructed how to treat themselves, something that the guideline from the BSH was set against at least for the duration of the pandemic. Some government agencies stated that patients should be assessed for the symptoms of Covid-19 by telephone on the day of their injection and, if there are no symptoms, the injection should go ahead whilst other government agencies stated that it’s entirely up to the individual GP practice to decide on what to do. No wonder that there is no consistency in response by healthcare professionals – it’s a very confusing picture.
Let’s hope that we don’t have to face another pandemic such as Covid-19 in the near future or have to face up to another second wave of this current one. But if we do then there is a clear need for there to be drawn up a plan that can be put into operation that will offer a consistent response to patients needing their life-saving treatment and at the same time protecting front-line workers. And to do this effectively, it is essential that the views and concerns of patients are taken into consideration by the panel that would produce the plan. There remains, of course, the problem of which organisation should take the lead in assembling the various interesting bodies – and that I can’t help with.
1. BNF stands for the British National Formulary, a joint publication by the British Medical Association and the Royal Pharmaceutical Society. It contains information on dosage, side-effects etc. of medicines.