Hi,
Apologies if this has been posted already.
B12 Deficiency Info blog post from 17th Nov.
Tracy Witty of B12 Deficiency Info is asking for people to help with next stage of trying to get injectable B12 available over the counter from UK pharmacies.
Email sent to my MP.
Please note that your MP will not be able to act unless you include your name and address in the email. That's because they can only act on behalf of their own constituents and they need to know you live in their constituency.
Email will be sent to my MP . Good it has a draft. Makes it alot easier with vision down.
I've emailed my MP about this as well.
Disappointing reply from my local MP:
Thank you for contacting me about the impact of coronavirus on vitamin B12 injections.
I agree it is important that patients are able to continue to access the care they need, which is why I fully support the NHS is Open campaign, urging the public to seek urgent care and treatment, as well as steps being taken to restore NHS services necessarily postponed by the pandemic.
I understand that the British Society for Haematology has issued guidance on vitamin B12 replacement during the pandemic, which states that needs for injections should be discussed with each patient individually. It suggests that oral supplements can be prescribed until it is possible to return to regular injections, with patients monitoring symptoms and reporting any changes to their GP directly.
If you or your mother experience any particular problem obtaining your treatment, please do let me know.
Thank you again for taking the time to contact me.
Vicky Ford MP
Not really the response I was looking for. Should I write back? If so any suggestions as to what to say?
Hi,
If you write back, you could include
1) WHO (World Health Organisation) has declared B12 injections an essential medicine which I understand to mean that giving b12 injections should be a priority during pandemic.
Will try to find a link about above and add it later or maybe someone else reading this thread will.
2) Articles etc that refute that oral treatment is an appropriate substitute.
Again, I will try to post some helpful links below.
Swiss study found that oral treatment was not as good as IM (intra muscular - injections).
smw.ch/article/doi/smw.2017...
Cochrane Review found low quality evidence that oral was as good as IM
pubmed.ncbi.nlm.nih.gov/295...
My point would be that major changes to treatment should not be based on low quality evidence.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Article suggests there is no proof that oral b12 is a good at treating B12 deficiency as B12 injections
You might also ask MP to ask CCG/Health Board for your area if patients facing a change from IM to oral treatment have given their informed consent....I suspect not.
I consider that changing from injections to oral is a major change especially when there appears to be little evidence that oral treatment is as good as IM.
Have a look at the section on defining consent in this NHS article.
nhs.uk/conditions/consent-t...
Other articles about consent
bjmp.org/content/right-cons...
bmj.com/content/357/bmj.j2224 (there are details that some may find upsetting in this article)
Reading the above article makes me wonder if doctors have a duty of care to inform patients who are being asked to change to oral of any potential risks.
I think patients should at least be told that there is little evidence that oral treatment is as good as IM.
I am not medically or legally trained.
No it's not. Lip service.
Not bothered to look onto the actual problem
I have written to my Mp. I will see if her response is any better
Another thing to put on your reply : its impossible to access your Gp to monitor your symptoms if denied essential treatment. Also isnt this more time consuming than carrying on with treatment ?? Alot of admin and doctors time monitoring individuals as it states . It simply will not be done. The consequence more ill patients needing more treatment blood tests ect
All so unnecessary.
A remedy was found to keep symptoms at bay. Preventing further damage .
Why would this be discarded when resources are stretched. ???
Why would a diagnosis and treatment plan be reviewed now.?
All that does is magnify the lack of training on this condition.
Why not stop insulin too and put everyone on tablets. My husband was trialled on tablets for type 1 diabetes years ago.
When they didnt work injections for life. They have never been challenged . Never been withdrawn.
No as they are aware of the consequences as trained and so much more research done as it's a drug that is needed. So funding from drug companies and competition.
So if b12 deficient . PA or an absorbtion problem.
Injections are for life
Takes years to get any heath back.
Why would any medic jeopardize that. ?
Why do so many self medicate?
I'm surprised a doctor hasnt been sued for negligence before now.
I await my reply from local MP.
Ha. Same Mp
My letter may have been longer.
Glad you posted ad if I get the same will be furious.
I used the template but added loads.
I've been getting my treatment.
My mums had to be fought for and my daughters.
I've received exactly the same reply !! I didnt even say I'd had trouble receiving my b12 treatment .
Its not been read .
Disgraceful.
Writing back.
I hope you do have a more proactive response Nackapan.Thank you Sleepybunny for your usual expansive reply I will check out all your links and send a further email.
Try to keep your letter to one specific subject. I wrote about getting B12 OTC.
I stated that the standard treatment is inadequate for thousands. That I was one who needed more frequent injections. That I buy from Germany. That having it OTC would enable thousands of people in the UK to take control of their own healthcare, as millions do in the EU.
With a link to the petition and the email of the MP trying to organise the debate. Asking him to attend that debate.
Just one point, with a personal reason for him to take it up.
If you include loads and loads of stuff then the MP will seize on one point that they know they can half answer. With my single-topic letter his response will either be - 'I went to the debate' or 'I didn't go for this reason'.
I also tried to make my letter appeal to his core Tory beliefs - the individual taking responsibility for their health, the fact that the UK is less free than the EU.
Yes a good point. It's all about the petition to get b12 OTC.
It doescs need reasons or a justification rather than sounding like a demand.
All that mp did was to see the response from BSH to covid19
Didnt read the petition .or think around why its needed over ovet the counter at all.
She didnt actually answer anything .
Undetectable
B12 Patches
Great blog post on B12 and videos from Prof Bruce HR Wolffenbuttel
