Good morning, I slightly touched on this subject with a previous post but wanted to put a bit more detail on in regards to my complaint to my Dr.
So after years of going back and forth to Drs with Depression, extreme fatigue, Brain fog (so bad I thought I had dementia) after numerous blood tests over years they said my ferritin was low(6.9) was given iron tabs but I couldn’t tolerate them due to other health conditions so paid privately to have an Iron infusion. Whilst there the Dr was asking about b12 what symptoms I have etc. It was 290 then he said that was low, gave me my first shot and then wrote to my GP requesting one a week for a month then fortnightly etc. To my surprise the surgery called me and booked my in for my first months worth of doses. I was so pleased. At the end of the first month I had to self isolate due to a surgical procedure. Which meant I had to go 3 weeks without any b12. I had a catch up with the Iron specialist during that time and he suggested going back to weekly for a few weeks as some of my symptoms had returned after I was feeling so great after the first 4. He wrote to my GP again suggesting this, which is the point where the GP decided he was going to write back to him and dispute the doses etc saying I was using up valuable nurse time etc and then my injections were stopped. At this point I complained to the practice manager, quoting BNF guidelines etc(which I know wasn’t followed at the time but I was just grateful to finally get some help) and also disputing why he only disputed it after my first month of injections etc also the fact the Dr never even spoke to me to say they were stopping or see if they were helping etc. I haven’t ever met this dr. I only found out they’d stopped when I went for my injection and the nurse told me she wasn’t licenced to give it as my GP has disputed it. Cue me leaving the surgery and 30 mins of arguing in tears! Anyway sorry for the long story, after almost 6 weeks, another letter from the Iron Dr to my GP the Gp has now decided to write to an NHS hematologist for further advice as the Iron Dr is only an aneasatist(he isn’t, he has many specialty areas). In my notes I see my GP has given permission for a “one off” b12, to which the receptionist called to book me in for an I politely declined as I either need it or I don’t. A one off injection at this point is not going to do anything.
Also I my notes i saw 9 years ago(the only other time my b12 was tested ) it was only 166 (which was marked as normal).
So I still have no formal answer from the Practice manager to my complaint and am considering taking it further/higher if that is something I can do?
Sorry for the long post, thankyou if you read till the end!
Any advice or comments , thankyou
PS- happy to post screenshots of the letters if anyone is interested(if it’s allowed)
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Purpleloulou27
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Purpleloulu27 - there are two units of measure that can be used on serum B12 - although they are roughly comparable they are slightly different so you need to be sure that the units were the same if you want to compare tests - and because pieces of kit can calibrate slightly differently you also need to be able to include the reference ranges in the comparison.The regime suggested by the GP is slightly at odds with BNF and sounds more like a regime that would be used in the US with cyanocobalamin so it would also be worth checking with the doctor who recommended the shots.
You may want to rethink on refusing the shot offered but may be push back and ask for it to be continued whilst seeking clarification with the haematologist. You also need to be aware that the haematologist may not have a B12 specialism and if they go back to the BCSH standards they may refer to that for deciding the frequency with which maintenance doses should be given (2-3 months/8-12 weeks).
I’ve attached a screenshot of the 2 results I have on file. I’m happy for the 2/3 monthly shots as I am currently self injecting since the dr stopped my shots. I would like it on my medical records tho that I have it and need it if that makes sense,
Please do everything you can to take this as far as possible - as well as you deserving it, it will be a landmark case for so many others too.
I had a slightly similar thing several years ago - it's just dreadful, isn't it! I was too ill to be able to fight so have just done my own SI ever since.
I'm really interested to hear your case and how you get on, please!
I am going through very similar with my GP practice now . Yesterday I received a letter stating that the GP who has refused the consultants advice of B12 every 4 weeks , will allow 8 weekly but no more . This dispute has been ongoing for about 2 years ( I was diagnosed withPA in the eighties and after an extensive “ saturation “ of B12 , I seemed to live quite normally , then my GP retired and my injections became a little haphazard, now a GP( never actually treated by him ) has decided that ( for safety’s sake and better for his budget ) I should have my shots reduced … so today I start back with the health board and see where we go from here ….. good luck in your fight ( and my fingers are firmly crossed that I will get a good resolution too)
Hi Purpleloulou27, your next step could be a complaint about your practice to the health ombudsman; it is very straightforward. I have used them recently; I called first to clarify whether they could take my complaint on and then completed an online form. Good luck with taking this forward.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
"So I still have no formal answer from the Practice manager to my complaint"
I know it sounds a bit silly but did you make it clear in your communication that it was a complaint?
My understanding is that there is a no set time limit on how long they have before they must reply to a complaint but I think they are supposed to update you if they have not responded within 6 months.
Pretty sure they are supposed to acknowledge that a complaint has been received within 3 working days of receiving it.
Might be worth talking to CAB ( Citizens Advice Bureau).
Article aimed at GPs about how to handle complaints
Pandemic may mean they have a bit more flexibility on time taken.
Have you looked at the complaints procedure/guidelines on your GP practice surgery website.
You could submit a FOI request to your GP practice or maybe your CCG/Health Board asking for a copy of their complaints procedure if you can't find it online.
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What do you think? Advice please new to this.
Update to looking for advice
Differing medical opinions? Hoping that this is positive outcome!
Any Advice on PA & B12 plus iron & ferritin 
