Response to Petition Asking for Adequate Treatment

by | Oct 25, 2015 | 2 comments

I’ve now received a response from the Minister for Health for Wales, Mark Drakeford AM.  This follows a petition that I submitted last year which called for a review of the way in which patients with Pernicious Anaemia are treated in order that their treatment regime matches their individual need.  As suspected the immediate reaction was to suggest that oral supplementation be introduced, presumably to allow patients to take oral supplements between injections.  The immediate response of the minister’s advisers was to suggest oral supplementation based on the findings of a Cochrane Review that found that high strength tablets had the potential to be used to treat any deficiency.  A Cochrane Review involves reviewing any research that has taken place and provides a summary of the research. Patients who have Pernicious Anaemia are unable to absorb B12 from food because they lack a protein called Intrinsic Factor that is responsible for extracting and transporting B12 from any animal product eaten.  Patients with Pernicious Anaemia will therefore have a barrier to absorption.  Yet given in extremely high doses some of the B12 will enter the bloodstream by Passive Infusion.  The evidence on which this is based is extremely thin mainly because the research that had taken place was decades old and centred on a small number of patients all of a certain age.  The authors conclude that 1% of the tablet would be absorbed in this way.  Obviously patients who do not have a barrier to absorption will absorb most or all of the tablet.  As I say in my next book, if I was told that I would have to take oral supplements I would swallow the high dose tablet with my fingers firmly crossed in the hope that some of it would enter my bloodstream by Passive Diffusion.  In fact what would happen is that I would by-pass my doctor and source injections from other places which is what I do now – I prefer Methylcobalamin to the prescribed Hydroxocobalamin.  This is what the letter says:

‘The Department of Health Medicine*, Pharmacy and Industry Group (MPIG) is looking at the possibility of persuading pharmaceutical companies to introduce new formulations.  I have been given no indication of when these discussions will be undertaken and it will likely take some time.  I will keep you up to date on developments.’

Now, this might sound like bad news.  The information has come from the Parliamentary Under Secretary for Public Health – Jane Ellison MP.  The Welsh Govt. had asked her about introducing tablets, high strength tablets that are currently not available on prescription.  Low dose tablets are available but they are no way suitable to treat any B12 Deficiency caused by Pernicious Anaemia.  The Cochrane Review found that a full 1,000 or 2,000 microgrammes in tablet form would mean that (hopefully) 1% will be absorbed passively.  So let’s assume that a patient who has Pernicious Anaemia takes a daily 1,000 mcg tablet and let’s assume, or rather hope, that 1% will be absorbed passively then the patient will receive 10mcg of the B12.  And if you remember that the Recommended Daily Intake of B12 is 2.4mcg then he or she will be receiving four times their daily average.

As I have said, this is based on an extremely dodgy series of narrow research programmes that are decades old.  It is not based on a robust study into patients of different ages and from a large number of participants.  Yet this flimsy research has been used to justify the use of oral treatment in Canada and Sweden and presumably could be used to introduce tablets instead of injections in the UK.

But take a look at the response from the Minister to the Minister for Heath for Wales.  They, (the MPIG) are looking at the possibility of persuading pharmaceutical companies to introduce new formulations‘ – that’s an important word – ‘formulations’; so they are not just looking at introducing tablets but ‘formulations’.  And that’s because there are a wide range of other methods of delivering B12 to patients with Pernicious Anaemia that by-passes the absorption barrier – the stomach.  Skin patches, nasal sprays, nasal drops, ointment, anal suppositories – yet none of these has been evaluated.  And there’s one novel method of delivery that is currently being looked at by a research team led by a member of the Pernicious Anaemia Society which is quite brilliant though it is years away from being ready for use by patients.

So what do we do?  In a time when Governments are looking to save money the temptation is for costly injections to be phased out (the cost in nurse time is the only significant cost) and oral supplementation introduced even if it involves the stomach.  Well, where oral tablets have been introduced there was little or no opposition from patient groups and a great many doctors are still prescribing injections.  And what I propose to do is represent the views of the members of the Pernicious Anaemia Society.  And that’s why I have written to the Minister for Public Health, Jane Ellison.  But I haven’t stopped there, I’ve also written to the Senior Civil Servant overseeing this, Dame Una O’Brien pointing out that introducing tablets to treat Pernicious Anaemia would result in two things: Firstly the evidence on which the policy would be based is incredibly flimsy and could lead to patients with Pernicious Anaemia going on to develop serious and irreversible nerve damage: Secondly it would mean that treatment would be driven even further underground with patients sourcing B12 from what could be unreliable sources.  I have also asked that the Pernicious Anaemia Society be consulted during the decision making process.  And that’s something that’s supported by the Minister:

In the meantime, my officials will ask the Haematology National Specialist Advisory Group to write to the service emphasising the need for a collaborative for those patients who feel they would benefit from an increased frequency of dosing”.

The introduction of B12 in Tablet form instead of injections has been simmering for decades.  And you know the Cochrane Review that I mention above.  Who do you think commissioned that over ten years ago?  The NHS that’s who.  Now why would they have commissioned that review if it wasn’t with the intention of justifying tablets to treat Pernicious Anaemia?

The Pernicious Anaemia Society will now busy itself in getting the alternative treatments evaluated including making the case for Self-Injecting.  There is no reason why patients cannot be taught to self-inject and to this end I am pleased to announce that we are now in the process of entering into a pilot project to investigate this option for patients.  After all, it would mean that the NHS would save money on Nurse Time and the patient would get treated according to his or her needs.

A win/win situation if ever there was one.


 

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2 Comments

2 Comments

  1. Marcelle Praetorius

    In the US patients do not get injections in office paid for unless they are at an appointment for something else. Cannot understand your system of wasting money or nurses time giving injections. Do your diabetics go in for their subq injections too? Of course not so why not have a system that teaches patients to do their at home after in initial office ones. I personally have taught an 85 year woman and and another woman as,I used to be a nurse so age is not a barrier

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  2. Frank Hollis

    I consider myself very fortunate. While I was having my loading doses I mentioned to the nurse that I may be thinking about self-injecting. Straight away she showed me how to prepare the injection, handed me the syringe, told me where on my thigh to stick it in. The next three doses I did myself, even showing a student nurse how I did it. I was also told how to get sharps bins swapped.

    If this particular practise can do it there’s no reason why others cannot. I would have been quite nervous about the whole process if I’d had to rely on what I’d read and some YouTube videos. Having a professional on hand made me much more comfortable about it.

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