First of all THANK YOU so much for your signatures and sharing of our petition which asks if we can access our B12 injections OTC from a pharmacy.
Petition update: Last year Nicky Morgan my MP met with Dame Sally Davies about the petition and the lack of education our GP’s receive on B12 deficiency.
Dame Sally Davies then wrote to the then Chair of The RCGP (Royal College of General Practitioners) about the outcome of their meeting. In the midst of all this Brexit got in the way.
Dame Sally Davies then stepped down and so did the Chair of the RCGP. So the communication chain here was broken.
Then we had a general election.
This meant that over 7 and a half years of work between myself and my MP had to start again. They were not allowed to keep past records from constituents so all that work and communication on their side was deleted.
You’ll appreciate how depressing this all was.
The work of getting the petition in front of those who can help us to change things did start again a few weeks ago when I met with my new MP Jane Hunt.
Jane has been involved from the very beginning as she was Nicky Morgan’s case worker. She has had to put up with 7 and a half years of me making a nuisance of myself regarding B12, so is fully primed and backs us all the way.
Please consider commenting or writing to your MP too.
This update is asking if you could take the time to comment on the blog posts below to state if you are being denied B12 injections due to #Covid19 or for any other reason. The reason for this is so that my MP can direct those she is working with directly to patient experience.
The problem with only commenting on FaceBook is that this moves quickly and gets lost. Your comments on the blogs give us a clear picture of what is happening to you and it gives us a permanent place to show those who can make change.
If we could buy B12 ampoules from UK pharmacies and self inject this would save millions for the NHS, take pressure off GP Practices and people with B12 deficiency could be in charge of their own healing.
Obviously in the midst of Coronavirus NHS and GP services are under huge strain.
Many are being told their essential injection appointment is cancelled, if all our MP’s and health agencies can work together then maybe we can make change in the not too distant future by making injectable B12 available over the counter.
So please comment here;
If you are being denied treatment due to Coronavirus please comment here;
https://www.b12info.com/blog/blog/2020/03/17/the-new-c-word/
If you are being given tablets instead of B12 injections due to GP’s lack of knowledge:
https://www.b12info.com/blog/blog/2019/07/26/wherever-we-are-in-the-world-we-are-all-in-the-same-boat/
If you are being told you no longer need B12 injections because your levels are normal:
https://www.b12info.com/blog/blog/2019/06/20/a-bizzarre-and-wasteful-practice-is-your-doctor-following-this-crowd/
The World Health Organisation has hydroxocobalamin listed as an essential medicine, we need B12 to live so let’s work together.
Finally, many of you have been asked to “chip in” financially by Change.org to get this petition in front of more people. That “Chip in” money goes to the very wealthy Change.org owners. It does not go directly to the cause you might be supporting. We can do the sharing ourselves without a cost to anyone.
Obviously any spare cash you have at the moment would be welcomed by food banks and the most vulnerable.
If in the future you want to support www.b12deficiency.info this can be done via the donation button at the foot of my website.
Thank you and take care
Tracey x
My injections have been stopped for 6 months! I have mine every 4 weeks. They won’t teach me to Self Administer. I’m going to be very very poorly by the time the 6 months are up!
Paula ask for the ampoules to be prescribed so you can self treat. Some surgeries are doing this for patients as they understand they are essential. It is unacceptable to expect you to go without treatment for 6 months! Best wishes Tracey
Just rang to make my next appointment and was told I can’t have one and that they are not doing injections. I’m about 4 weeks away from needing my next one. I’m really scared because it impacts my freaking immune system!
Yesterday 27 March 2020 I was due for my b12 injection and had been working from home this day so had to inform my boss I would need to pop out to the GP for my injection. Luckily I rung up my surgery and checked if it was still happening because the receptionist told me it’s cancelled. I was like well no one informed me. Receptionist was like well nurse should have rung you. I was like well what do you expect me to do do now I feel that exhausted I can barely open my eyes. My legs are aching and feel drained. She was like sorry no nurses available at all today. She said I can book you in for Monday 30 March at 09.15 I said yes please but please do inform me if it’s cancelled or give me an alternative because I can’t cope like this I need my boost. I understand about COVID-19 makes things very difficult but my immune system can now lower without my dose!
Mine were due last week – not happening as surgery closed due to the big C !
So technically I’ll miss 2 injections if this runs for 6 months .
I have PA along with other health conditions and my injections are literally the only thing stopping my nerves zapping , my legs from collapsing and conversing forget it .
Tablets don’t work because I can’t digest B12 so dreading not having any quality of life more than catching Corona
My surgery in North Wales simply left a voicemail saying that all B12 injections cancelled for 3-6 months and to buy tablets – no advice as to which ones. I phoned back to query this because I have PA and was not happy to take tablets – they do not work. I was told to buy methycobalamin spray, which we know is insufficient by itself. So no prescription and incorrect advice. I have sent a written request to speak with a doctor to dicuss self injecting but have yet to hear from them.
I have B12 injections every 8 weeks after much trial and error to find a good level of treatment. I was due to have my injection on 6 April. So, if my doctor refuses to allow me a prescription to self inject then it will be 5 – 9 months before I am treated again. This is a shocking length of time to leave any condition untreated and unmonitored!
I am very scared of returning symptoms – I was seriously ill before I was diagnosed with PA and it took several years to get back to my very fit and active self.
Was due my B12 jab 1st May, I had been calling my doctors on a weekly basis to check they were still going ahead with the injections and each time being told “Nothing to worry about, they are continuing as normal” Phoned my docs 30th April to be told they are not doing them now and B12 stays in system for 6 months so I will be fine, I told her I wouldn’t be fine for another 4 months as I have pernicious anaemia. So receptionist sorted so i got a call from the doctor. He phoned later in the day, told me he had read through my notes and saw that I have Crohns disease so would give me the injection because of that.
I went May 1st for my jab and doctor asked when i was diagnosed with PA, I told him it was about 17/18 years ago, a year or so after i was diagnosed with Crohns. I then got told that there is no record of me having PA and probably haven’t got it and although he would give me the injection this time he wrote me out a prescription for tablets to take to see if I could cope without injections. This is the same doctor who 4 months ago, after me telling him how bad i felt after 8/9 weeks (pins and needles/numbness/dizziness/memory loss etc) agreed I could have injections every 8 weeks instead of 12.
I mentioned self injecting and was told that he would not recommend this. Was told again to take the tablets and to see how I get on and if I was struggling with symptoms whilst taking the tablets to get back in touch.
OMG Sam, I imagine you will be ‘back in touch’ very soon!