Five Cases of Mistreatment in One Hour

by | Aug 20, 2015 | 1 comment

Yesterday morning started normally enough.  The lady who looks after the e-bay site had left me a note asking me to take a look at some comments from a lady who had purchased some of our wristbands.  The member had written that she was in a terrible mess and had been told that because her B12 levels were high she could only have an injection once a year.  She was diagnosed twenty years ago and had been managing, but only just, on the three monthly injections but four years ago she was told she can only have an injection every year.  I replied and asked her to call the office.

When I reached the office she had already left a message and I telephone her.  As in all these cases I told her to go and talk to her doctor and mention that she had spoken to us and that we were extremely concerned and would become actively involved unless things were changed.  I have to refer patients back to their doctor as a matter of course – before we get actively involved we have to give the patient’s physician to correct any shortcomings in treatment.  I suspect that we will end up writing to the practice manager and the Medical Director of the Regional Health Board but first we must give the physician to order the correct treatment.

Ten minutes later I had another call from a middle-aged man who had all the symptoms but whose serum B12 was one point over the threshold.  Following a previous telephone call with me he had convinced his doctor to allow him a therapeutic trial of weekly injections for four weeks.  He reported an immense improvement in both his physical and mental state.  But now – you guessed it – those injections have been stopped and he is experiencing a return of his symptoms two months after his last injection.

Ten minutes later it was a similar story.  This time a 21 year old lady with all of the symptoms including numbness in her toes and ankles.  Again she was given a therapeutic trial of four weekly injections as her serum B12 was exactly on the threshold used to determine any deficiency.  She experienced a marked improvement but now they have been stopped again and she is going back to how she was.

I could also tell you about the university student who cannot manage the three months between injections and is really struggling (last week I had a 22 yr old medical student in the same position though in her case her two uncles with PA were injecting themselves monthly – they were both doctors) or the lady in her mid thirties with all of the symptoms who took along our summary of the new guidelines to show her doctor that she should be ignoring the test and treating her – she too had numbness in her feet; unfortunately the doctor told her that we, as a society, were ‘scaremongering’ and that we were ‘non-medical’.

All of these conversations took place within one hour.

I had no alternative but to refer them to doctors in the private sector or to alternative supplementation methods – and I shouldn’t have to; there is a serious shortfall in how the NHS is diagnosing and treating patients that we will continue to campaign to get this rectified.

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1 Comment

  1. Sarah

    Thank you for all the effort you put into helping people and for continuing your campaign to change how PA is diagnosed and treated.

    It is scary the number of people I talk to who can’t get adequate treatment from the NHS and some who sadly can’t get any treatment at all because their doctors/consultants seem unaware of the BCSH Cobalamin and Folate guidelines and other recent articles.


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