I suppose this is just a heads up for anyone in the Cheshire and Merseyside area. I called my new gp surgery (having recently moved house) to book my b12 injection. I was told that I would need blood tests for b12 and intrinsic factor. I explained that these were done in 2017, my b12 was low and intrinsic factor positive following which I was diagnosed with pernicious and prescribed 8 weekly injections for life.The receptionist at my new gp said the ccg has ordered 'a sweep' of all patients on b12 injections; repeat b12 and intrinsic factor blood test, to see who cam go on tablets!
I attended the phlebotomy appointment and said that I had a diagnosis in 2017 and did not want an unnecessary, invasive test when I had already been diagnosed.
The phlebotomist went back through my notes and found my diagnosis from 2017; she will present this to the gp and hopefully I will be able to continue to receive treatment without any further tests.
Like most of you, my gp has no interest in working out why I have ongoing symptoms and I feel quite insulted that they now have the time and resource to do 'a sweep' of patients with the sole purpose of withdrawing treatment.
True. Many people here have asked in the past for an IFab test in an attempt to determine the cause of their B12 deficiency - and been told there is no point, since treatment for B12 deficiency is the same, whatever the cause. But that was pre-sweep !
Since this test in any case will only pick up about 40-60% of those with PA, where are they going to sweep the other 60-40% ? I wonder if the medical profession are aware that the toss of a coin will give similar odds.
Tablets will work for some people, it's true. They are all that a healthy vegan would need if taken from the offset, for instance. For others, tablets are effective if taken in massive amounts ( via 1% passive absorption). But for many, tablets seem to make no difference at all to their symptoms - in exactly the same way that B12 in their diet made no difference.
Currently, the only way for them to truly determine which of these groups each B12 deficient patient belongs to would be to give everyone tablets. Then monitor all of them to see who deteriorates, either rapidly or over time, and who doesn't. But that would be in direct contravention of the oath to "first, do no harm."
So this sweep appears to be based on one test that is widely acknowledged to be incapable of identifying all those with PA, and another test that will measure the injected B12 in the bloodstream, but not what proportion of that B12 is still active -or able to reach cell/tissue level.
Until more is known, or a more effective means of testing is available, this is a dangerous waste of NHS money. Irreversible nerve damage could be a result if monitoring is not carried out, or reluctance to reinstate B12 injections prevents surgeries admitting that this was a bad move. What would be the cost then ?
If you have the time and energy, please think about contacting PAS and B12 Deficiency Info as I'm sure they'd be interested in this story....they might want to blog about it.
I'd be asking to see the policy that recommends the "sweep".
You could submit a FOI (Freedom Of Information) to ICB website asking for a link to or copy of the report/policy/minutes of meeting that recommended this "sweep".
Thank you for all this information; I will read it and keep it handy. I am so symptomatic it would be great if they helped me, not made life more difficult. I am now just waiting to see if the gp accepts my original diagnosis.
These documents/articles don't cover your area but might give you an idea of the thinking that goes on behind the scenes when reviewing patients on B12 injections.
Link above has letter templates covering a variety of situations linked to B12 deficiency.
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.
3) 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. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
That is a good idea; I will call them in a couple of days to see if my original diagnosis is accepted and if not will write directly to my gp as you suggest. Having a record is wise in anticipation of future obstacles to receiving treatment
Forcing patients to submit to blood tests which are not in the interests of those individual patients is deeply unethical.
If a doctor considers a test is for the benefit of all patients, of his patients, of his budget, then he is not acting for the patient. That undermines everything about consent.
It is wrong. Indeed, in my view, it constitutes conducting a trial without ethics approval.
I completely agree; I said to them that they would be carrying out an unnecessary and invasive procedure and yes it must surely be unethical to make someone choose between a blood test and receiving treatment or no test and no treatment. I am sure they won't actually do this!
My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.
Of course they may argue that changing from IM B12 injections to oral B12 is not a major change.
Personally I would argue that it is a major change.
As I understand it (I'm not a scientist or medical professional) this means that the GP should
1) discuss the pros and cons of changing to oral treatment
2) make sure patient understands the issues
3) get patient's agreement before treatment is changed from IM B12 injections to oral B12.
I'm assuming you have not given informed consent to a change to oral treatment in the past.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP that you have not given your informed consent for the change in treatment.
Keep copies of any letters sent or received.
It might be useful in case there is a need for formal complaint in future.
Ethical Approval
If the change to oral treatment is part of a study, has the GP surgery or ICB/Health Board got "ethical approval"for the study?
You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.
If they say they have ethical approval, ask to see it...
Don't worry, they absolutely cannot ask me to go on tablets; I'll keep you posted.
Have your GPs and specialists got a complete list of all your symptoms, especially every neurological symptom and definitely any affecting your spinal area.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
I used the PAS checklist and added extra symptoms to the bottom of the list.
Delayed or inadequate treatment increases the risk of developing permanent neurological damage, including damage to spinal cord.
If GPs are not giving you adequate treatment then may be worth discussing SACD, sub acute combined degeneration of the spinal cord with them, in a letter and conversations.
I'm not saying you have SACD.
I am saying that your doctors should be aware that SACD is a potential consequence of B12 deficiency if treatment is inadequate and mentioning it may make them sit up and take more notice of you.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Challenging GPs can lead to GP/patient relationship becoming strained.
Do you have someone supportive and well-informed about B12 deficiency who could go with you to appointments?
Have you considered asking to record appointments?
It's my impression that GPs are likely to be kinder if a witness is present or they're being recorded.
GPs are not likely to be keen on appts being recorded but if you have issues that could affect your understanding of what's said eg memory problems, cognitive issues, fatigue etc then you would have a good case to be allowed to on disability grounds .
I suggest any request to record appointment is made well in advance of appointment and should include the reasons why recording is necessary eg memory problems.
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