Our thanks go to the Countess of Mar for her support in trying to get the Dept of Health to address the problems faced in getting a timely and accurate diagnosis of Pernicious Anaemia.images

Following previous questions Lady Margaret tabled the following questions in mid July:

1. To ask Her Majesty’s Government upon what scientific evidence they rely to show that there need be no concern for the health of pregnant women or the foetus exposed to fume events on aircraft.
2. To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of pernicious anaemia following the publication of the results of a survey published in the British Nursing Journal in April 2014.
3. To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur if pernicious anaemia is misdiagnosed as ME/CFS, depression, hypochondria or multiple sclerosis

The first question was nothing to do with PA but the second two were and the first of these mentions the results of our survey.  Here is the reply from the government who, in this instance, is represented by Lord Prior of Brampton who is a minister of health

Lord Prior of Brampton, the Department of Health, has provided the following answer to your written parliamentary question (HL1540):
Question:
To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed. (HL1540)
Tabled on: 16 July 2015
This question was grouped with the following question(s) for answer:
1. To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of pernicious anaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014. (HL1539)
Tabled on: 16 July 2015
Answer:
Lord Prior of Brampton:
It is important that patients suffering from pernicious anaemia, the result of a vitamin B12 (cobalamin) deficiency, receive a prompt and appropriate diagnosis. Pernicious anaemia develops gradually, and can cause a range of symptoms, including fatigue, lethargy, feeling faint and headaches, which vary from patient to patient. Because of the gradual progression of the condition, the variety of symptoms, which are shared with a range of other conditions, diagnosis at early onset can be challenging.
To support the diagnosis of pernicious anaemia, the British Committee for Standards in Haematology (BCSH) has published Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders, which sets out that cobalamin status is the recommended first line diagnostic test. However, the guidance states that there is no gold standard test for the condition and makes it clear that the clinical picture of a patient is the most important factor in assessing the significance of the test results. This means clinicians should take into account all of the symptoms the patent is experiencing, their medical history, age and other relevant factors when considering the implications of a patient’s cobalamin status. The BCSH guidance highlights the risk of neurological impairment if treatment is delayed.

The BCSH operates independently of Department and NHS England and produces evidence based guidelines for both clinical and laboratory haematologists on the diagnosis and treatment of haematological disease, drawing on the advice of expert consultants and clinical scientists practicing in the United Kingdom. It would be for the BCSH, not the Department, to consider whether any adjustments to current best practice in the diagnosis and treatment of patients with pernicious anaemia were needed, including whether any new or additional tests were appropriate. A copy of the BCSH guidance document has already been placed in the Library and is attached.

More general clinical guidance on the diagnosis and management of pernicious anaemia can also be found on the National Institute for Health and Care Excellence (NICE) Clinical Knowledge Summaries website. This is a freely accessible online resource that covers the causes, symptoms, diagnosis and treatment of pernicious anaemia, as well as potential complications of the condition. In addition to this, NHS Choices provides similar, though less technical, information on pernicious anaemia for the public.

So what does this all mean.  Well it means that it is back to the drawing board – well, sort of.  What the reply is very good at doing is pointing out that the Dept. of Health is not responsible for telling doctors what they should be doing.  The Guidelines produced by the British Committee for Standards in Haematology (BCSH) were the result of a long-term diplomatic lobby of various bodies and they are very good; no, they are exceptionally good at identifying, or rather verifying what a growing number of physicians know – that the current tests to determine B12 Deficiency and whether that deficiency is caused by lack of Intrinsic Factor (Pernicious Anaemia) are next to useless and that physicians should listen to the patient’s symptoms rather than rely on the tests.  So – that was a wonderful achievement especially when you consider how many other issues Haematologists are having to address and that the guidelines were written by volunteers who all have an interest and expertise in B12 related issues.

So now what?  Well we could just throw up our hands and say “I give up” or we could take a good look at what the reply from the Dept of Health says – and hidden in among the politic speak is a very good sentence:

‘It would be for the BCSH, not the Department, to consider whether any adjustments to current best practice in the diagnosis and treatment of patients with pernicious anaemia were needed, including whether any new or additional tests were appropriate’.

Passing the buck?  No – most definitely not – what they are doing is stating that the experts have identified the problem but have offered no solution to the problem of making primary care physicians aware of what they recommend.  Or so I thought.  Last Friday I had a short meeting with the lead author of the Guidelines and asked how they were going to make GPs aware of the new guidelines.  It seems that the British Society for Haematology are working on this and may even be developing an app that GPs can download and complete in order to gain Continuous Professional Development credits.  I asked the haematologist what we could do to help and he suggested that maybe we (that’s me) could produce a short 30 minute presentation that marries in the results of our survey of patients’ experiences in getting diagnosed with what the new guidelines state.  But that would mean being invited along to GP training sessions to present the talk.  And so guess what I will be working on in September?  Now where to start?

My thanks go to Lady Mar for her support and I would like to wish Dr Vinod Devalia the best of luck as he takes up his now post ‘over the bridge’ in England.  Dr Devalia has been a great supporter of the society and hopefully he will continue to work and advise us.

But what of the Treatment of PA – the guidelines make it perfectly clear that this is a matter for the British National Formulary (BNF) which is a joint undertaking by the Royal Society of Medicine and the Royal Pharmaceutical Society.  I’ve already had one meeting with the Director of the BNF who told me that if I could provide evidence that some doctors are treating some patients more often than the guidelines state then they could “change the wording” in the BNF.  Guess what – I’ve got the evidence (see my next book) and, perhaps just as importantly, the Dept of Health states quite categorically that the treatment a patient receives should be based on discussion between the physician and the patient and it is not for the Dept of Health to interfere with this.  So I have some ammunition to put our case when I next meet with the BNF representatives.

I’ve started the ball rolling with a letter to the Chairman of the BCSH asking if they are able to do anything to make GPs aware of the recommendations of the new guidelines and if the society can do anything to help disseminate them.  Onwards and upwards.