And the waiting continues.
When I first wrote the petition to make B12 available over the counter it was spring of 2014.
Thank you to every single person who has signed and shared that document. In order to try and progress our aim, I wrote a new petition which was presented to Parliament on B12 awareness day 2020. I have held my head in my hands many times since then, incredulous that we are in such a ridiculous but easy to remedy situation. It has been shown this past 18 months that ‘healthcare’ changes can happen overnight if the powers that shouldn’t be, want to make them happen.
Injectable B12 should be available OTC from pharmacies, just as it is in other countries, simply because it’s a vitamin that we can’t live without. I can’t quite get my head around the hoops we have to keep jumping through to try to get common sense to prevail.
Back in 2014 I was invited to meet with the MHRA in London. A costly affair and all the more annoying as they stated right at the start of the meeting, ‘we can’t help you’. What on earth was I doing there then, couldn’t they have told me this on the phone?
In July of 2016 I met with Jane Ellison along with Nicky Morgan who was my MP at the time, this was another costly and frustrating experience. Over the years I have contacted countless people who we thought might help and yet we remain without injectable B12 available to us without a prescription in the UK. We keep writing to our MP’s, giving evidence and waiting.
The debate
It’s been a few months since MP Jane Hunt debated our OTC B12 petition in Westminster Hall. Since that time many of you answered Nadine Dorries’ (who was then Minister of State for Mental Health, Suicide Prevention and Patient Safety), call to action, to write with your experience to the Women’s Health Strategy. You, like I, will have thought, perfect, she’s the woman for the job – but no, Nadine was debating on behalf of and reporting back to Lord Bethell as the lead Minister. He, as a Lord, could not be part of the debate and you may be aware he has since left his post under a very big cloud.
Nadine Dorries
Nadine responded to Jane’s speech by letter repeating the same ‘legislation’ as the MHRA but she has since moved post to Secretary of State for Digital, Culture, Media and Sport and declined meeting with us. She signed off by saying any further enquires on the subject would be passed onto Lord Bethell. His post is now held by Lord Kamal and as yet we have no communication from him.
The Government has now published its Vision for the Women’s Health Strategy, based on the responses it received to the Call for Evidence. The vision has not made reference to B12 deficiency, but will apparently get into more detail about specific health conditions in its actual Women’s Health Strategy, which is due to be published in Spring 2022. So we wait again.
Jane Hunt has also been in communication with the MHRA and the below details excerpts from the MHRA reply from Dr June Raine 27th July 2021 and my notes back to Jane Hunt in red.
…We are reviewing the products’ marketing authorisations to explore if there is adequate evidence to update these to make changes to recommended usage and frequency of dosing, and our licensing assessors are having initial discussions with companies on this. Perhaps they should also have conversations with patients and patient groups. We are aware that, even if changes can be made to the marketing authorisations, this alone will not mean that all sufferers receive the treatment they need at the optimum dosing interval for them individually. But they could and should if they made it available OTC people in need could keep themselves well and relieve any burden on GP Practices. There is new NICE advice and guidelines under development, but this is not expected until 2023. And this is too far away. It may make a difference in future but this can all be changed over night. The MHRA have had since 2014, since the date of the first signature on the petition to help.
There are injectable vitamin B12 products available which are not intended, or marketed, for a medicinal purpose and which are not classified as medicinal products. This is an identical product. These products fall under The General Product Safety Regulations. They cannot be administered for a medical purpose, but they are it must be absolutely clear in the advertising of such products that they do not have a medical purpose, but it has and they must be clearly distinguishable from licensed medicines. We continue to take action in cases where such products are advertised with medicinal or medical claims…In the advertising of these products they use the word ‘boost’ or ‘supplement’ and that’s ok with the MHRA. The MHRA have warned clinics against telling the truth about what B12 does in the body regarding detox and the immune system.
Madness
We know that hydroxocobalam is hydroxocobalamin whether it’s used as ‘a lifestyle choice’ or an essential medicine. Those setting up profitable businesses selling B12 injections as a ‘lifestyle boost’ work within the MHRA regulations to do this. These companies run courses so that any Tom, Dick or Harry can give injections. Their inclusion criteria is not limited in any way to healthcare professionals. So what we are told repeatedly is absolute nonsense.
It’s important to note here that botox can also be injected by a ‘lay-person’ despite the associated dangers, none of which exist with B12.
NICE
As you see above Dr June Raine of the MHRA mentions that NICE Guidance is under
development. In August last year NICE had their Stakeholder meeting and it was so good to hear other voices singing the same tune and helping to add information and experience to make change to the B12 deficiency & pernicious anaemia Guideline. We discussed how hard it is for children to access diagnosis and treatment and the need for paediatricians to be on the committee and how vital psychiatry input would be. Obviously the current narrow focus on haematology is not fit for purpose.
I am not allowed to be a ‘lay person’ on the NICE Committee as I would have had to suspend my work in B12 for the next two years. However the lay people who are involved care very much about our voices being heard.
What now?
I had another meeting with Jane last week and she still awaits a reply from her last communication to the MHRA from the 8th of October. The next steps are to try and meet with Dr June Raine and Lord Kamal so everything is still to be continued…
In the mean time, have you followed the money?
Does it interest you to know that the MHRA and Public Health England receive funding from billionaire Bill’s foundation? Is it of interest to you that Ian Hudson, predecessor to Dr June Raine now works for this foundation? Bill’s foundation has its fingers in many pies all over the world, here’s a tiny snapshot of his funding of UK education, UK research, the BBC, the Financial Times and the Guardian. There is no getting away from the fact that all this shows us there is a clear conflict of interest.
If you are interested in seeing more about how the land lies and who has fingers in what pies, then take a look at this film.
Again you put yourself out there to try and help so many people who need B12 more regularly than most doctors will prescribe . How do you do it Tracey with all the knock backs you receive many would have given up long ago but I know you are built of much sterner stuff even though to your own detriment . Maybe one day you will succeed no one deserves it more. Hang in there Tracey your day will come.
I live in North east Scotland and I cannot even get my regular 12 week injection by the NHS due to covid. My last injection from the NHS was February 2020. I have found someone private but at a cost of £40 an injection. Its crazy that they are still refusing to give me something they know I require and they were happy to give me pre covid but not willing to start the injections back up. I’d be happy to take lateral flow tests prior to going to the doctors
Hi Fiona, we’re north east Scotland too. My partner has pernicious anaemia and his last b12 injection at local GP was also February 2020! They want him to take sublingual tablets, which don’t work for him. I couldn’t be bothered with arguing with doctors who should know better!! I now self inject him with b12 which we bought from Germany. The cost for this is £1.00 per injection (b12 ampoules, p&p, syringes, needles, swabs and sharps box). We also inject much more regularly and his health has improved massively.
Hi, please can I have details of your German supplier as I’m seriously considering self injections for myself. Thanks
Sorry, didn’t realise I had messages from this.
I used Apotheke Marienbrunn.de
HealthUnlocked in the Pernicious Anaemia also have lists of German suppliers. Good luck
Hi Angela
It would be wonderful if you could supply me with your contact in Germany. I used to get my extra supply from Lanzarote but the chemists there now require a Doctor’s prescription.
Many Thanks
Barrie Jones
Sorry, didn’t realise I had messages from this.
I used Apotheke Marienbrunn.de
HealthUnlocked in the Pernicious Anaemia also have lists of German suppliers. Good luck
Hi.
Could you please let me know of the supplier for the injections also.
I need B12 injections but don’t know where to start to look for a reputable supplier
Thank you so much for keeping at it, despite the utter nonsense you come up against repeatedly!
I’m trying yo trust awareness at my gp surgery.
Thank you for great resources snd ‘fighting the fight’
I’ve recently managed to get my 2 weekly b12
injections back .
Iys quite ridiculous how so much time and money is spent trying to stop our treatment.
Thank you
Thank you for everything you’re doing. I’m currently sat in bed exhausted yet still have another 3 weeks before I’m ‘allowed’ my 12 weekly injection. This is despite me having a genetic condition that causes this. I’ve looked up places that offer the injection as a lifestyle choice but it’s financially out of my reach.
Dear Tracey
I am in awe of your resilience. I have written and responded on B12 issues since diagnosed with PA in 2012 after 10 years of ill health. I cannot believe how little help we get from anyone whether politically or in the health fraternity. If any of the top dogs suffered as many of us do maybe they would do a better job in helping us to help ourselves. It is an utter disgrace.
Thank you for all you continue to do.
Susie
Susie, I know, I really emphasise with you. If our body doesn’t make it, like mine, then the assistance we need should be available anywhere, I suffer with a lot of other medical issues on top of this which is debilitating at times due to exhaustion.
I have changed my injection frequency from twice a week to twice a month. So I have 200 vials of Rotexmedica B12. The law says I cannot give it away. But I presume I can gift it for non-medical purposes?
Anybody need any free energy-boosters (expire March 2022 and August 2022)?
Hi have you given them away yet ? Thanks x
Impressed – that’s quite a reduction, Frank !
How’s that going ?
Well, I hope.
Thank you for persisting in this important fight! With you all the way!
I have suffered from b12 deficiency for over 17 years, when I had a kidney removed. I had my b12 injections down to the lowest time the gps said I could receive it. I am now currently on tablets each day instead, to which I preferred the injection for beneficial results.
This is something patients need, for life, and it should be readily available in pharmacies, since the EU trades, sadly all medications are becoming a problem to get
I live in France, and b12 injections are OTC. The needles, the vials and the container to put the used needles in. No reason why you shouldn’t have it in the UK.
Thank you for continuing to fight to get injectable B12 OTC in UK.
I am hopeful it will happen one day, the sooner the better.
I am constantly hearing about people for whom the usual four B12 injections a year in UK is just not enough.
Why should people with B12 deficiency in UK suffer because their treatment is rationed?
I get upset when I think about the people who don’t have the resources to get extra injections from private sector.
If France can do it, why can’t UK?
Thank you.
Thank you for fighting for us.
B12 is essential to us and yet “they” don’t listen.