Some might say this title is dramatic, but those who are currently denied access to B12 injections, who are panicked to within an inch of their lives with coronavirus and who now have no essential vitamin B12 treatment, would probably feel it’s a completely reasonable statement.
Being expected to cope for months on end without your safe, cheap, effective and life saving injections would be like making someone climb up Mount Everest without any shoes or coat whilst carrying a donkey on their back.
I know of no other vital life saving medicine that has been stopped during this crisis and I can’t imagine that any other group of people in the UK are being denied such an easy, quick treatment at this time.
A bleak 6 months ahead
This letter below, sent to a whole county might make the untrained eye think that it’s perfectly reasonable to stop B12 injections and give B12 tablets for six months….
Letters, emails, phone calls and texts like these are being received all over the UK, I have seen them from Lancashire, Herefordshire, Gloucestershire, Hertfordshire, Cheshire, Leicestershire, Northumberland, Tyne & Wear, Flintshire, Cardiff, Essex, Wolverhampton, Cornwall, North Yorks, west Lothian, Midlothian, Aberdeenshire.
Here’s the text from the first paragraph;
We are writing to you on behalf of your GP in regards to your B12 injections. As from Monday, the 30th of March we will no longer be giving B12 injections to patients therefore all our future appointments have been cancelled. This is as a result of coronavirus and our aim is to protect you as well as our staff. We will restart the injections once the current measures are suspended.
Do you see the sneaky stuff in there?
What is ridiculous to B12 deficient patients is this totally incorrect and bizarre idea that we can access stores of B12. We can’t and that’s why we’re B12 deficient and why we need regular replacement, this simple fact needs to be understood.
The last bullet point is the real kicker. The uneducated clinicians will say, “you don’t have Intrinsic factor antibodies (IFA) so you don’t have pernicious anaemia (PA) and so you will stay on tablets because we decided you can now miraculously absorb B12 from food!” This ludicrous concept crops up frequently (I have blogged about it before here.) It needs repeating so often – PA is just one of many causes and they are all serious and need correct treatment.
It seems they’re going to try and say you don’t need injections by testing your serum levels after they’ve given B12 oral tablets that simply can’t replace the benefit of B12 injections. They’ll do this by saying “your serum B12 levels are high now so you must be well” whilst ignoring the fact that you’re a depressed, exhausted, broken heap on the floor.
Most of us are in a state of panic at the moment, but imagine having anxiety levels through the roof and then being told you can’t have your life-saving medication for six months because someone ignorant of your condition has decided that YOU don’t matter. Not for six months anyway.
Some people were already on their knees when their injection was cancelled because the last one they had was in December, how exactly are they supposed to function? Some of these people are key workers expected to ‘soldier on’ until they collapse, some are parents thrust into 24/7 child care whilst trying to hold onto a job or their businesses by a thread.
Bay Medical Group (For Happier Healthier people!) have added this clumsy and unhelpful Q&A to their website entitled B12 Switch to oral medication.
Tidal wave of future problems
It’s impossible to expect there to be no mental or physical health casualties among those with B12 deficiency if the only provision for them is a tablet that won’t work to heal nerves or reduce symptoms but will raise serum levels.
Many of us feel like we’re currently living inside the most bizarre film set of all time, but it is also feels a bit like a ridiculous black comedy for some with B12 deficiency.
Many of our GP’s are unaware of the mental health aspect of B12 deficiency despite depression being one of the most common symptoms.
Without B12 injections we can’t function, we can’t remember, can’t walk, can’t feel happy, can’t think, can’t hear, can’t speak properly, can’t live fully.
How are the people with returning psychosis supposed to cope? How are their loved ones expected to manage this severe symptom which is an every day reality in untreated B12 deficiency in either their child, sibling, mother or father?
We’re all told to look after our mental health during this period but these incomprehensible restrictions are making things so much worse than they need to be.
Even people without previous mental health problems are having them surface during this period of isolation. The mental health charity Sane are warning that the Coronavirus could lead to a mental health epidemic.
Cutting essential, cheap, effective treatment for thousands of people through a lack of understanding of a common condition is beyond foolish. In fact it’s a time bomb and there will be guaranteed casualties amongst B12 deficient patients who only take oral tablets during this period.
The World Health Organisation states the following in their document Mental health and psychosocial considerations during the COVID-19 outbreak
The following directives are appropriate for those with B12 deficiency; –
Messages for team leaders or managers in health facilities:-
16. Manage urgent mental health and neurological complaints (e.g. delirium, psychosis, severe anxiety or depression) within emergency or general healthcare facilities. Appropriate trained and qualified staff may need to be deployed to these locations when time permits, and the capacity of general healthcare staff capacity to provide mental health and psychosocial support should be increased (see the mhGAP Humanitarian Intervention Guide).
17. Ensure availability of essential, generic psychotropic medications at all levels of health care. People living with long-term mental health conditions or epileptic seizures will need uninterrupted access to their medication, and sudden discontinuation should be avoided.
Messages for older adults, people with underlying health conditions and their carers
22. Older adults, especially in isolation and those with cognitive decline/dementia, may become more anxious, angry, stressed, agitated and withdrawn during the outbreak or while in quarantine. Provide practical and emotional support through informal networks (families) and health professionals.
24. If you have an underlying health condition, make sure to have access to any medications that you are currently using. Activate your social contacts to provide you with assistance, if needed.
People who can only keep their psychosis and depression caused by B12 deficiency at bay with B12 injections should surely be considered here?
B12 (hydroxocobalamin is listed as an essential medicine by WHO (see page 19 here) but it seems this is not understood by many GP’s.
There are often comparisons made between insulin and B12 injections and whilst everybody understands that insulin is essential and required by each patient in different amounts some health professionals mistakenly think that B12 is a placebo, a frivolous want for lazy people with hypochondria and Munchausen’s Syndrome. They also think that we all need the same measly amount regardless of our symptoms and level of damage. B12 is as important to patients as insulin is to diabetics.
Our friends and family outside of the B12 world see our predicament as bizarre, they ask us the following questions about B12 injections: –
Are they life-saving YES
Is it expensive NO
Can you overdose NO
We can ask the same of questions about insulin: –
Is it life-saving YES
Is it expensive YES
Can you overdose YES
Can you imagine the outrage if insulin were stopped for six months?
Methotrexate, heparin and insulin are all automatically given to patients to self inject at home, but all these are medications which need strict control, in contrast B12 injections (hydroxocobalamin) cannot be overdosed.
B12 is essential, if you are prescribed B12 injections then it means you cannot absorb B12 from food so oral tablets won’t work.
The British Journal of Haematology state:
“The use of high dose oral cyanocobalamin is licenced for use in several countries….however the efficacy and cost-effectiveness…is yet to be established.”
Vital treatment should not be restricted or stopped.
We are not in a war.
There is no shortage of B12.
We of course appreciate that GP Practices are under huge pressure at the moment and that many are experiencing staff shortages but there is always a way around these problems.
Practices need to reinstate B12 injections for anyone who is well and can get to the surgery or prescribe B12 ampoules and sub cutaneous needles for people to collect from a pharmacy so that they, or someone close to them can give them their vital injection. (Sub cutaneous injections would be most sensible for patients to use and are the route most who self inject choose, myself included.)
We need our doctors to get behind this movement so that they and the Practice nurses can be freed up from giving injections to those who can inject themselves.
For the sake of the GP’s and nurses who are too busy to teach you to self inject, here are some helpful NHS guides below;
Self injection with sub cut;
Link for how to break an ampoule and load syringe;
We need to be concerned about those people who are unable to function due to lack of B12 but who daren’t insist on treatment, those who quietly accept that their essential injection has been stopped. Our GP’s must be vigilant here and check on those at risk because they don’t want to, or feel they shouldn’t make a fuss.
Petition – Doctors, help us to get off your backs!
I’ve had numerous emails and comments detailing particular struggles with the denied access to B12 from all ages and the one solution which could make this situation better now and in the future is to make injectable B12 available over the counter from pharmacies. This would remove an enormous financial and time burden from the NHS, and GP Practices and would allow the panic to, at least partially, subside in hundreds of thousands of people in the UK.
If your doctor is on our side (I know that some are) please ask them to support this petition and share it with their colleagues.
Please consider joining the 89,000 + kind people who have already signed and shared our Petition.
(Please note: Every time you sign a change.org petition you will be asked to ‘Chip in’ money, but be warned, this money goes directly to the very wealthy change.org company and not a penny goes to the cause you might support.)
If we can get The MHRA and other NHS agencies to help us at a time where barriers are being removed then the tidal wave which is already gathering speed could be slowed.
On Twitter, there’s evidence that some doctors are celebrating the fact that during this crisis, barriers that made their patient’s and their lives difficult have been removed in minutes, funding hasn’t been blocked and they can do parts of their job more easily…..
Martin Marshall (@MartinRCGP) Tweeted:
“2 emails from friends overnight saying the same thing, one a GP and local NHS leader and the other a clinical academic. They say they’ve achieve more progress in their work in the last 6 days than in the previous 6 months. People are making things happen and barriers are removed.”
Well isn’t now the time for B12 patients to get a piece of the action and have their huge barrier to good health removed?
We are living in unprecedented times but whilst all of us are in this mess together and whilst our backs are against the wall we need to see the great opportunity for change before us. Perhaps now there’s a real chance that we can get our B12 injections made available over the counter and bring us into line with other countries around the world so that we in the UK aren’t left behind.
It’s important for me to acknowledge that there are brilliant Practices in the UK that know their patients need their B12 injections and are either still administering them or are prescribing ampoules and equipment to make it possible for patients to self treat. (My Practice is one of these and I am so grateful, thank you Doctor B!) Anyone under the care of these good Practices will be eternally grateful for their understanding and care at this time. Many would give up their first born to be treated by you!
Take care and stay safe,