The eloquent Christine Monkhouse wrote to both her MP and Nadine Dorries following the request for personal stories, many of you have kindly shared these with me. Everyone feels that enough is enough…it’s time for change.
Please see Christine’s words below…
Subject: Debate on B12 becoming an OTC medicine on 26 May 2021
Dear Nadine Dorries,
You wanted to hear the stories of B12 deficiency sufferers – here goes:
I have had B12 deficiency for 9 years now. For four years I was improperly treated by my doctors, and went downhill. I quoted the NICE and BNF guidelines to them; I pointed out how my symptoms improved after an injection; I begged and begged for more. Eventually I found the help site which showed me how to purchase B12 online from Germany and inject myself.
In the next five years I improved constantly, injecting every day or every other day. I am STILL IMPROVING! My symptoms improved from 24, to 4 or 5. Some are now, I believe permanent, like my foot pain.
My partner seriously believed I would be unable to cope within two or three years, and he would be visiting me in a Home. And I have still not managed to persuade my doctors I need it prescribed for me.
I have seen 5 GPs at my surgery now, and been sent to see neurologists (three times), endocrinologist, haematologist, and gastroenterologist. That’s eleven opportunities for proper treatment to be prescribed. It is also an enormous waste of NHS time, money, and resources.
I find it hard to relate the Government’s response to the petition – I quote: “Clinically urgent treatment must always be provided……Any patient can request a review with their GP….” with the behaviour of those GPs when you get to see them.
The WHOLE POINT of this petition is that GPs do NOT follow the NICE Guidelines! If they did, we would have no need to get our B12 from Germany! There are 96,000 signatures on the petition – this must surely represent at least 96,000 GPs who have ignored their patients clinical needs – and if they have all, as I have, consulted several different clinical people, it must represent probably 300,000 medical personnel who have failed their patients. And there must be many more who didn’t sign!
There are two choices – instruct GPs to follow the guidelines, or give patients the ability to provide their own treatment.
If it turns out that German pharmacies will no longer export B12 because of Brexit, and if Covid prevents me going to Germany to buy my own, I am seriously considering padlocking myself to the surgery, contacting local and national newspapers and TV, providing my own camera crew, and refusing to move. Perhaps the sight of an 81 year old woman being arrested, manhandled, and if necessary going to jail, will galvanise Government into taking action!
Your sincerely
Christine Monkhouse
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Christine’s words mirror that of so many who have shared their stories, making the point that so much time and money is wasted when vitamin B12 deficiency is not diagnosed or treated correctly.
Is it right in this day and age, in this wealthy country, that people are begging doctors for an inexpensive vitamin that is essential for life?
Making injectable B12 OTC from pharmacies would profoundly change lives for the better.
Kindness always
Tracey x
Would like to buy a B12 for Life campaign pin?
I’ve been lucky with my GP and I now SI 10 weekly with supplies from them but I also SI with supplies I got from Germany at the end of 2019 (still within use by dates thankfully). If I can’t get my extra supplies from Germany in future it will mean me being under treated. Things need to be put right, beauty salons are even doing B12 injections now so why can’t people who really need it to save their lives, get it as easily!
I have symptoms of Chronic Fatigue, Fibromyalgia, Brain Fog, Muscle Spasms, Tinnitus, etc. and have been referred by my GP to a Radioligist, Orthopedic Services for X-ray and MRI scan, Rheumatologyist, Gastrointerolosgist, Pain Clinic. I have consulted with my GP for symptom relief for what at times can be extended periods of excruciating nerve and soft tissue pain, extreme fatigue and cognitive impairment, along with a whole host of other symptoms.
Although I consider my GP has treated my symptoms well by referring me for a series of investigative tests, during the pandemic I have not utilised the GP services for any further investigation into my condition, so as not to burden the NHS.
However, I have sourced B12 injections privately which have helped my symptom relief tremendously.
It appears from what I have read recently that b12 deficiency is being considered as a predominatly female issue, however, I am male and would point out that if only females were permitted access to b12 injections from GP’s or Pharmacies, then that would be discriminatory against males and people of other sexual orientation.
There are no doubt many thousands of males and other sexual oriented people who have been denied life enabling b12 injections from their GP’s.
From the biology learned at school, I can recall that the correct level of vitamins is vital to good health. Humans do not produce vitamin b12 and need absorb it from their diet. If absorbtion of b12 is insufficient through the stomach, then it follows that supplementation should be considered to maintain the correct balance, until the cause of b12 deficiency is diagnosed and rectified, if possible.
The b12 requirements of each patient does not appear to be at the forefront GP’s minds, as a potential treatment option.
Patients might not know to ask their GP to consider b12 injections as a possible treatment. I have heard of numerous people being declined a b12 test from their GP’s, when they have symptoms that could be csused by b12 deficiency.
GP’s, for whatever reason, seem reluctant provide access to b12 injections. The first option for GP’s seems to be the prescription of pharmaceutical drugs. The reasons for this approach by GP’s should be investigated to establish if other better, and possibly cheaper options are available.
From my experience in managing my own symptoms, by not considering b12 deficiency as a possible option for symptom treatment is a missed opportunity. The effect of this could impact negatively on many patients’ well-being, ability to work and enjoy an improved quality of life.
The blinkered approach to b12 injections by GP’s should be reviewed and questions asked as to why countries such as Germany, for example, have higher recommended normal levels of b12 than those recommended in the UK.
In Germany b12 injections are available over the counter. On what basis did Germany see fit to make b12 injections freely available? Can the UK learn from the approach taken to b12 injections in Germany?
Should the UK consider changing the status of b12 injections from Prescription Only Medication to being freely available over the counter?
I agree docter s dont want to know i had it every eight weeks 3 times.last two times back to 12weeks. Dropt right back.
I 100% agree I’m also in pain suffering B12 and have tried to buy injections elsewhere to self inject as doctors refuse me more than one b12 every 12wk They work but wear off pretty quick so I need them more often I have explained this to my GP and I get fobbed off telling me it’s probably something else. Then why does it stop for a little while after I’ve had my B12 injections??
Hi Nicola, it is a crying shame that what the patient says often falls on deaf ears.
So many people end up self treating due to this lack of understanding.