I am reposting the link put on by Sleepybunny 5 days ago........
Hi,
I've posted about Care Opinion before but look every now and then to see if any stories have been posted about B12 deficiency. They want people to share good and bad experiences of health care in UK.
Sometimes the GP surgeries/hospitals etc respond to what is posted.
There have been several B12 deficiency stories added since I last looked at this site.
Put "B12 deficiency" in the search box to see the stories.
I think it would be great if more people posted their stories. Might raise awareness of B12 deficiency. It is possible to post stories anonymously. Check terms and conditions before posting.
I clicked on the link, wrote about my lack of care with regard to B12 beficiency and long journey of getting a diagnosis. You can do the same to raise awareness.
I recieved a reply from CareOpinion as follows..........
Dear Jillymo,
Thank you for submitting your story on Care Opinion with regards to your experiences receiving care for B12 deficiency. You raise some important points which we hope can be fed back to the relevant services. We wanted to let you know that we will be tagging your story to all the GP services in the area, as no specific services are mentioned in your story, unless we hear otherwise from you about linking to a specific hospital or practice. Please let us know by responding to this email if you wish this to happen.
Kind Regards,
Hopefully by others doing the same more surgerys and hospitals will be educated and brought up to date in the management of a B12 deficiency and PA. I also added albeit not out until next month the new B12 Guidelines in my response....... nice.org.uk/guidance/gid-ng...
Please write your stories good or bad to help raise awareness of this debilitating illness. Surely the more hospitals and surgerys that are contacted and made aware of our plight will benifit other suffers.
Thank you.
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Jillymo
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Dear Jilymo, I think members in the UK are so lucky to have this PA society because it seems the health care system is starting to seek feedback. I'm based in Australia so I don't think any feedback from me is relevant to you other than to add to the information stack and confirm that in Australia (from a patients' perspective) the situation that (a) medical professional awareness is low, (b) it is seriously poorly diagnosed, and that I have had a torrid time to finally piece together a jigsaw puzzle myself (after 300 hours of research regarding published articles) to understand my condition. I confirm also that there is pressing need to get a handle on the question periodicity or frequency of B12 injections required. I had to 'drag' a diagnosis out of specialists here, after "I" requested antibody tests, which returned positive result for both Intrinsic Factor and Parietal Cells. It was an awful experience. I have lost my job and career suffering the psychiatric manifestation of PA secondary to autoimmune metaplastic atrophic gastritis. This condition has a bigger impact on society that is currently understood. I look forward to hearing about new research being conducted under the auspices of the PA Society.
REQUEST - Is it possible for a moderator to download and send me the NICE guidelines relevant to PA secondary to AMAG - I can't download them because the UK servers recognize I am in Australia please!
all the people who had their B12 injections stopped during pandemic and then never reinstated
the people whose doctors refused them treatment despite having all the typical symptoms because their serum B12 was normal despite NICE guidance saying that B12 deficiency symptoms can occur with normal range serum B12.
the people who were told that they didn't have PA (Pernicious Anaemia) because their IFA test was negative despite NICE (National Institute of Health and Care Excellence) guidance saying that about half of people with PA test negative on IFA test
the people who were told that they didn't have B12 deficiency because they didn't have anaemia with large red blood cells (macrocytic anaemia) despite NICE guidance saying that some people with b12 deficiency do not have macrocytic anaemia
the people who have watched a young or elderly relative decline over last few years
the people with neurological/neuro-psychiatric symptoms of B12 deficiency who were
a) given only 6 (or less) loading injection when NICE and BNF suggest a B12 loading injection every other day until symptoms stop improving for those with neuro symptoms
b) restricted to one maintenance injection every 3 months despite NICE and BNF guidance suggesting maintenance injections every 2 months
the people who were continually misdiagnosed with other conditions
Just wondering if anyone has ever received an apology from a doctor :-
‘Apologising to a patient does not mean that you are admitting legal liability for what has happened. This is set out in legislation in parts of the UK and NHS Resolution also advises that saying sorry is the right thing to do. In addition, a fitness to practise panel may view an apology as evidence of insight.’
I received an apology from an endocrinologist but that was many years ago after taking the swine to tribunal. The apology was added to my notes but I dont think that would happen now.
The post is not about getting an apology it is in the hope of raising awareness of the condition and the prompt need for injections instead of the one size fits all regime we have at present. Hopefully in the near future many of us wont have to shout so loud to be heard.
My line of thinking was doctors are married to doctors, socialise with doctors, have others in the family who are doctors and talk about us behind our backs.
Can you imagine one saying over dinner, I missed a case of PA/B12D. Another chipping in saying, I did the same. Another saying, Oh, I have one who needs Every Order Day injections. Their neurologist told me. I agreed. The others, say What ?
Yes, I have some literature from the PA Society and the latest article in the BMJ by a guy called Bruce. Then for my Continuous Professional Development to revalidate my license , I wrote a reflection about it until then I was absolutely clueless.
I can say that, yes, I've had doctors in US apologize to me. Most recently two weeks ago. I wrote a very well referenced letter and presented it to him in person, we discussed it then he apologized and said "what would you like" I then outlined the care I wanted and he ordered that right then. 😎
Narwhal10Yes I received a written apology once 5 years ago I had a labral tear on myleft hip repaired arthroscopically. I had tears repaired on my right hip 5 months prior and had 2 weeks of fragmin post operatively. Surgery is about 2 hours long and limited mobility post op. So nice guidelines on thromboembolism applied and I was deemed high risk on both occasions. Issue Arose from hip dysplasia. The second procedure on left hip no fragmin given. I queried with discharge nurse. Politely told to go away. Couple of days post op became very ill ambulance to A&E, diagnosed multiple bilateral PE's lucky to survive. Orthopaedic surgeon wrote to me said he clearly got it wrong, he was sorry and all hip arthroscopy patients would get 2 weeks of fragmin now. He said he would change his protocol but couldn't provide his existing protocol. However as you say legally this is not an admission of clinical negligence. Hopefully this will prevent the same problem for others having this procedure. It was nhs procedure in a private hospital.
I hadn't heard of it either until Sleepybunny10 posted who is excellent at finding such sites!
We hear of some very sad and desperate cases. I feel it would help if more people wrote their stories on Care Opinion. To get a response to say they are going to contact surgerys, consultants ect to make them aware of our plight surely has to be a step forward with regard to our care.
Maybe one of the moderators will spot the post and add to the side of the page. 🤞
Hi all my pals across the pond. I'm not in UK so unable to participate. But this is so important I urge all in the UK to participate. I can't stress enough the importance of having your voice heard via your story, and all together your voice may become a roar! I know, the roar part is a bit of a cliche but truly it does make a difference.
JillymoThank you for reposting sleepy bunny's post. I will definitely post my story using the link. I agree the more of us relay our stories the better.
Thanks Jillymo, I seem to have missed the posting by Sleepybunny, but have rectified this now by using your link and have told them my story and experience of my GP Surgery. 👍
Thank you so much for re-posting this and submitting your story Jillymo Your brave efforts lift all of us up!! Sending hugs and much gratitude your way ❤️🤗
And thanks to Sleepybunny for posting it initially!!
I dont know about brave it's more out of desperation to have this dreadful illness recognised. I have read some sad stories of late which makes many of us wish we could help them. I cant bear to think of how many there are of us needlessly suffering. Xx 😘
Dear Jillymo , the whole story about the shocking treatment of patients with B12 deficiency/ Pernicious Anaemia , reminds me , in some measure , of THE GREAT POST OFFICE SCANDAL that has now come to light . Officialdom’s huge ignorance and in some cases callousness , causing huge harm to innocent people , Doubts being expressed , then everything suppressed and hurriedly swept under the carpet, in the hope that it would die a death . But some brave souls put their heads above the parapet , and have now started to achieve some redress, with the help of a TV documentary .
Well the shocking treatment of so many B12 /Pernicious Anaemia patients needs a similar public exposure . Many lives have been ruined , and it’s still happening . I know that this may sound rather over-dramatic , but it is not . We need a TV documentary ! That would really achieve something .
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