On B12 Awareness Day last year, our petition asking for injectable B12 to be made available over the counter was presented in Parliament. Following on from this, there will be a Westminster Hall debate tomorrow, Wednesday 26th May at 4.05pm.
My MP, Jane Hunt will be making her speech on this issue, to include patient cases, the debate will last for 30 minutes.
If you want to tune in to watch the proceedings please click here.
Thank you everybody for helping to get us this far, as usual, I have everything crossed!
Thank you to Jane Hunt for her fantastic speech and to Nadine Dorries MP, who is asking women to register their experiences with The Women’s Health Strategy this has to be done by June the 13th 2021.
Nadine incorrectly stated that a different form of B12 was used in private clinics and not hydroxocobalamin which is used by the NHS. This is not true. Many clinics use hydroxocobalamin as their primary form but will also use other such as methyl and cyano.
As discussed during the debate, we know that men also suffer from this and we are not forgetting you!
Kindness always
Tracey x
www.b12deficeincy.info
Good luck. I hope it is successful
Thank you Karen!
Good luck. I can’t get the Parliamentary tv download to work so may not see the debate live. Keep us posted. Well done with your hard work to get this far. Thank you
I’ll hopefully be able to ass a link afterwards Susan, best wishes Tracey
I’ve also lobbied Jane. Fingers crossed!
Brilliant Leila!
I have filled in the survey on the women’s health strategy. I do hope it helps in some way to get us heard
Tracey has worked so hard and is still working hard to get the best for patients to enable them to access the care they desperately need I hope her clients and/or contacts get behind her to enable this to go forward. Well done Tracey
When will we hear whether the classification has been changed or not?
I think we get a response around the end of June Lenny. Best wishes Tracey
Hi Tracey
I was also wondering when we would hear. Fingers crossed.
I wrote to my MP about the debate and her response to me is pasted below just for your information.
Thank you
Sue Childs
Dear Susan,
Thank you very much for getting in touch on this important issue. I can assure you that I have been looking very seriously at the issue of the need for B12 injections and will continue to do so.
I’m afraid I am unable to attend any other All Party Parliamentary Groups (APPGs) at the moment as I need to keep enough time aside for dealing with the most urgent constituency cases but I can assure you I am keen to keep abreast of this APPG’s vital work and I look forward to learning more from my parliamentary colleagues as this vital group continues.
Thank you again for getting in touch. I do hope you are keeping well,
Siobhan
Siobhan Baillie MP
Member of Parliament for Stroud
http://www.siobhanbaillie.org.uk/
My apologies of this is in the wrong place. I am 77 next week and not clever with computers. None the less I thought some might find my story of interest. I have endured a B12 battle for some years. From early childhood I suffered neurological symptoms, by my mid forties I suffered daily chronic (24/7) migraine pain. A private GP suggested B12 by injection some years back. Life began to improve but recently I am on a new level. It has been a long journey with several B12 blood tests all of which showed “normal’. I have had several hospital admissions and, on one occasion, the consultant told me that in 20 years of being a doctor he had never heard of anyone having a B12 injection more than four times per year? How can any doctor be so ignorant?
Last winter I got very unwell and my GP suggested I stay off B12 for a month so that an accurate blood test could be done. It was an awful month and the test at the end of it showed normal range once again. The GP said – sorry we cannot help you, you are on your own. Go straight home and inject yourself!
I emailed the private GP who suggested I inject daily. The private GP also told me about Dr. Patrick Kingsley who treated 9,000 patients with MS type symptoms with huge success. Many patients were given B12 intravenously and others has daily injections. Armed with this information I started daily injections. At the same time Tracey suggested methylfolate which I added in at 400 mcg daily. I am a new man and thank you Tracey!
My experience has reminded me of a previous GP who said that I have, in his words “An unidentified neurological degenerative illness, for which there is no remedy”.
All of the above makes me wonder – am I actually B12 deficient or not? For example, If you have a headache one day and take an aspirin the pain might go away. Does that mean you are aspirin deficient? In the same way, does Hydroxocabalamin act in a medicinal way for those of us with severe neurological degenerative symptoms? In some ways the answer does not matter as B12 is giving me unimagined quality of life but, to the chemists among us, it is of interest and worthy of consideration.
With regard to dose, I am continuing with daily injections so far. I have tried missing a day but cannot quite cope if I do. Dr. Chandy (www.b12d.org) says some people need daily injections so, for now, I continue daily but will keep trying to reduce.
I cannot thank Tracey enough for all her help and, in particular, her suggestion of methylfolate. Until she told me, I knew nothing about it.
Dear Christian, thank you for your comment it is in exactly the right place!
Best wishes Tracey x
Hearing your story gives hope to others who are also battling in similar circumstances. I hope you get long term relief.
Those like Tracey who never tire of fighting for us need medals. They have our eternal thanks.