Make your comment count if your B12 injections are being stopped!

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.b12deficiency.info/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.b12deficiency.info/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.b12deficiency.info/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

 

I met Jane Ellison MP in Parliament last week…..

Jane Ellison, Public Health Minister and two advisors kindly spent time listening to the issues facing B12 deficient patients when I met her along with my own, very supportive MP, Nicky Morgan.

I chose to petition Jane as her ministerial responsibilities include; dementia, diabetes, children’s health and school nursing, long-term conditions, health visiting, NHS health checks, preventing avoidable mortality etc. All these categories and more relate to B12 deficiency.

Surprisingly Jane Ellison said that in three years in post she hadn’t heard anything about B12 deficiency and therefore all that I delivered was new to her!

I spoke about the 18,000 odd signatures on the B12 OTC petition, (this asks for our B12 to be made available to purchase over the counter from pharmacies, to bring us into line with so many other countries)  each time it’s signed an email is sent to both Jeremy Hunt – Secretary for Health and Dr Sarah Wollaston; Member of the Health Select Committee.

I spoke about my own personal experience of B12 deficiency and why I feel that both petitions are so vital to the lives of so many who are as yet undiagnosed and those who are currently under treated. I spoke about the 20,000  visits per month to my website of which over 50% are from the UK.

We are all aware that this is a worldwide problem and not just a whine from a disgruntled handful of patients.

I was not allowed to take a paramedic to the meeting with me who would have relayed that around 80% of the calls she attends to are made up from those ‘at risk’ groups; elderly patients who fall, mental health patients, and patients with chest pain.

I also spoke about the petition I have addressed to Jane Ellison herself (to add screening for both B12 and folate to be added to a full blood count) and I left her with some of the many comments left by signers who detail their own delayed diagnosis or misdiagnosis of B12 deficiency. I also spoke about the low reference ranges of the serum test and of the need to treat patients by symptoms.

It remains to be seen whether or not she is convinced that we have a problem.

Jane Ellison will however, follow in many of our footsteps and write to NICE and to the RCGP and other NHS departments following our meeting. Perhaps a letter from a Minister will make the difference?

I will update you when I hear anything.

I know that so many UK patients have met with or written to their MP’s and to NICE and frankly, to anyone else they can think of who may have either clout or heart.

I hate to ask you again – but for those of you who can muster the energy to contact your MP, please ask them to raise the issues and concerns you outline with both Jeremy hunt MP and Jane Ellison MP then perhaps we can help them to understand the strength of feeling that patients have and the desperate need for change?

If you have already done this, could you please make sure your MP has forwarded the information onward too?

Thanks to all of you who have already emailed me the names of your supportive MP’s. My MP Nicky Morgan will have contacted them – it doesn’t mean they have engaged unfortunately but you could ask!

If we all work together on this, we can make a difference.

Al the best, Tracey