Thanks to Cherylclaire for highlighting the article. It contained many interesting points and I thought I’d start a new thread about it.
I was particularly struck by his comment that the first impression you create with your doctor is so important. Given that appointments with our gp are so short how does everyone manage to get their point across effectively? It is such a complicated matter and although I carefully rehearse what I want to say I invariably end up almost tongue tied because l know my doctor is on the defensive the moment I utter the word b12. So now I feel it’s an out of bounds subject and just manage my situation as best I can.
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MorningMist
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I made notes of all my symptoms to get a had put up to stop me in my tracts of quoting them - to be abruptly told he only wanted to hear of my present symptoms. As for a Dr you cant get to see one at my surgery !
You used a very appt word of defensive, aren't they just. 🤬
I took a printed check list with common PA symptoms. I checked the appropriate symptoms so my GP could quickly scan the list. Then we only had to discuss tests & treatment. I had an undocumented diagnosis from a retired colleague of his. Fortunately, he trusted the information I delivered to him and after tests began injections of Cyanocobalamin. The list really helped to keep the conversation unemotional and focused. He placed the list in my records for future reference The list can be printed from perniciousanemiasociety.org
I had an undocumented diagnosis from a retired colleague of his.
I am intrigued by this. Now a clinician has to also be exceptionally good at Record Keeping as well. So, if any of us went to our bank and on 4 July 2023 paid $5000.00 in cash, over the counter into our bank of our account, SORT CODE 12-45-98 Account Number: 89451266 at HSBC, on Radio Avenue, NY.
Yet, when we went to an ATM on 10 July 2023, there was no RECORD of that deposit, what do you think happens next ? 😉
I not only printed out relevant informmation for my consultation, I also emailed it to my Gp. My Gp didn't even ask my symptoms she simply went by blood results and prescribed 3 monthly injections.
It depends on how knoledgeable your Gp is and what hospital and consultant you see. The first port of call should be to detect why the patient is deficient ie: poor diet oris is a gastric issue ?
Most are sent to see a neurologist yet they only prescribe 3 monthly injections ! Patients wait month to be seen and during that time endure further nerve damage. Some consultants deliberatly gaslight patients to shorten lists (which looks better on paper) and label them with FND.
I even tried pointing both my Gp and consultant to the information on the Pas site to no avail. I gave up and took my health into my own hands. 💉
I insisted I be seen by a gastrologist and waited best part of a year to be seen! I then waited months for an MRI and at present waiting an ultra sound. It will be New Year before I see the consultant even yet they suspect I have crohn's. There is a 44 week wait for a colonoscopy ! ! !
Far too many practicioner's are playing 🐱 and 🐁 with patients lives.
I am in Canada and this is happening here also. I was directed to call a Naturopath if I wanted more b12 shots. In 80 yrs of medical care this is a novel experience.
I once saw a haematologist at a leading London hospital.
I had written out two A4 sides: 2 symptoms lists, one physical and one mental, with a brief (one sentence) description of each one. She asked to make copies for their records.
I hope it gave her a much better understanding of B12 deficiency and how it can adversely affect a life. I doubt it, though : she tried to dissuade me from self injecting by telling me how very addictive B12 is. Yes, I did ask her for proof of that - several times. She said that initially she wanted to ask the questions, and promised that she would answer all my questions on my next visit.
I never saw her again and at my next visit, I saw a locum haematologist instead, who started telling me how toxic and carcinogenic B12 is .......and told my GP not to give me more than one B12 injection every 8 weeks, so halving the inadequate frequency I was already getting at the surgery.
>sigh<
I started self injecting EOD - and told my GP the day after I did the first one. A gradual improvement, but it still took me yet another term off sick before I was able to start a phased return to work one day a week.
It is a very valid point and people can be utterly exhausted from all the tasks required to just get to an appointment or waiting for a phone call.
I have always put everything in writing. A Practice Manager can read it as well. It is an auditable paper trail. Every Trust, Integrated Care Board, Health Board has a Data Protection Officer and Information Governance Team. If a Clinician will not actively listen, they cannot obtain data accurately nor store it. So, getting copies of your notes and walking in with them ALL printed out in a nice A4 file, you may be able to say to doctor at this time and date you wrote this about me. It is wrong, I do not even own a bike, I fell when I was walking. MorningMist, you will find some discrepancies.
Then you can say doctor you do understand the General Data Protection Regulation (2018) ?
The principles are Lawfulness, Fairness, Transparency; Purpose Limitation and Data Minimisation; Accuracy; Storage Limitations; Integrity and Confidentiality; and Accountability.
Their face will fall and they will be very apologetic. That leaves you wide open to say, Shall we talk about my Hydroxycobalamin frequency ?
On the subject of discrepancies, I have had access to consultation records for a couple of weeks. ( Medication records go back quite a few years). The first thing I noticed was a fictitious appointment with a physiotherapist I have never heard of. It’s not a good start!
Well, I bet you had a great adventure with the physiotherapist and there was lashings of ginger beer. Anne, Julian, Dick, George and Timmy the dog also loved it too. The End.
Go through your notes and see what other discrepancies there are. The errors at GP Surgery can be used as a bargaining chip for Hydroxycobalamin treatment.
Data is a commodity, outside the medical world, it is bought and sold.
I didn't even know there was a B12 to be deficient in when I first went to the GP.
Now, about eight years later, I still go to consultants in the hope that they will say the "B word" - because I won't say it first ! Not that I lie about self injecting, but that I won't ask if it could be the cause of the presented problem. It doesn't usually get mentioned as a concern until the first time they do a blood test, and then they become so overly concerned with the high B12 serum level that they forget all about the particular cause of my referral (which is usually one or another B12 deficiency symptom anyway).
I think I might be done now with trying to get there through elimination of all else.
Most symptoms that we see as clearly quite routine B12 deficiency symptoms are not recognised by GPs or nurses or consultants, even when they cannot pin it on any other condition.
I had a very supportive GP who really helped me. Now that she has left, I feel disinclined to start again with someone else.
I can understand your reluctance to open the b12 Pandora’s box with another doctor. I think to have a good understanding of b12 deficiency you need to consider the body as a whole because b12 underpins so many processes. Everything in public health is so compartmentalised it’s just impossible.
I saw a cardiologist for ectopic heart beats and his line of investigation was ecg, echocardiogram, stress testing. But not one single blood test to check what was going on at the baseline. That might have involved a different area of medicine…
When I approached my clueless Gp with information from Pas she got very defensive to the point she said 'our relationship had broken down' and pased me onto another Dr ! I wasn't aware there was a relationship I had only seen her the twice the rest was phone consultations. The Dr she has passed me onto is just as useless.
Really needs a relationship, this - one of a gradual build-up of trust on both sides. Then continuity. It is no longer that easy to continue care under one GP.
I can very much understand that first impressions count.After being told on Friday that I wasn't allowed my usual injection after 10 weeks and that I would have to see a doctor for a review, I have been offered an appointment later this morning with a doctor I've not met before.
On the one hand it's daunting, in that I have no idea what to expect from this g.p. On the other hand, it presents the opportunity for a clean slate rather than seeing a g.p. who has previously refused more frequent injections (despite being very kind).
I am taking with me various printouts from BMJ, NICE and the Pernicious Anaemia Society with a few key parts highlighted and hoping they will listen.
Get the blood result that states B12 deficiency it has a time and date. It had your NHS NO : and UNIT NO. It may have a person’s name (from laboratory) or a REPORT ID : . IT IS PROOF OF DISEASE.
If you had an Intrinsic Factor Test. Ask your new GP if they know about SF-8. It is a Statistical Questionnaire used in Health Care in many countries.
Inform them that by reducing your frequency of injections, your SF-8 SCORE will reduce. Tell them you know Health Data is CODED by a Health Information Professional using SNOMED-CT for :-
Clinical Aspects of :-
• Clinical Governance
• Clinical Audit
• Outcome and Effectiveness of Patient’s Care and Treatment
Statistical Aspects :-
• Payment by Results
• Cost Analysis
• Commissioning
• Aetiology Studies
• Health Trends
• Epidemiology Studies
• Clinical Indicators and Casemix Planning
Sorry, lots of words so only say the ones in bold.
Thank you very much. I just came home from my appointment and I didn't even need to show any of my printouts or refer to them. The doctor agreed to my request of injections every 8 weeks and checking my folate, ferritin etc every 6 months. She said it's on the system now. Hurray! I hope nobody changes it again.
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PAS, NICE and guidelines for PA.
