Pernicious Anaemia Society
There were only six messages left on the answering machine when I arrived at the office. I expected more because it was the week-end and I hadn’t gone in on Saturday. Saturday mornings are usually busy because people leave messages throughout the week but when I try calling their phone is switched off or at least doesn’t get answered, probably because he or she is in work. So Saturday mornings are usually ‘catch up’ time.
One of the messages was a duplicate – the person was obviously having a fog day and couldn’t remember leaving the original message – there was no answer. Another was about how frustrated she was with her GP – but again there was no answer. The third call did answer and she told me how wonderful her GP was who was prescribing an injection every three weeks and would get the practice nurse to show her how to self-inject safely and using the correct equipment. The fourth call was the usual “I’ve got all the symptoms but because my levels are borderline I can’t get treated and he/she won’t read the summary of the new guidelines I printed off”. The fifth was regarding a teenager who has all the symptoms that her mother has but whose B12 level is just above the local threshold to determine any deficiency. The mother is using the sub-lingual spray but wanted to know if she should start treating her daughter with it (a decision you must take in consultation with your doctor) and the final call was from someone who wanted the name of a Haematologist who specialised in Pernicious Anaemia (I know of nobody).
Then I had an email from a young lady I spoke to last week who was struggling with the demands of her degree course at one of the UK’s top universities. She had discussed her problems with her tutor and her tutor would like me to contact her with more information. I’ve just had another email telling me that an Australian member would be telephoning at 9am my time – 9pm her time.
What I didn’t get yesterday was a call from a patient who had had his or her treatment stopped “because my levels are too high”. I usually get at least one of those every day.
Last Saturday (21/11/15) I travelled to Eastbourne to attend the first meeting of the Eastbourne Support Group. I won’t go on about how it meant a 5:30 am start, or how I had to battle through driving snow to get there, or how I managed to stay in control of my car driving over untreated roads – I could but I won’t.
Anyway, it was a great meeting with some interesting people. Two of those attending told me how much they enjoyed reading my blog. I was thinking about this as I drove home through the snow and….well you know. I am often quite surprised at the number of people who take an interest in what I write here and so I’ve downloaded a piece of software from WordPress that tells me how many people visit these pages everyday. I was astonished to discover that yesterday (Sunday) 76 people visited this blog. And because I can analyse the history of visits to this site that figure is about the average number of visits per day. Sometimes over 100 people stop by to see if I have written anything and I’m aware that often they will be disappointed so here’s an old year resolution. I will write something every day – even if it is just a summary of the phone calls I take every day. That way, hopefully even more people will be able to understand the work that I do on behalf of the PAS.
And with that said, I’m now heading in to the office to find out who’s been trying to contact us.
Last Friday I received an email from a medical professional based in Washington DC who was preparing a presentation on the problems with the diagnosis and treatment of Pernicious Anaemia. She was asking for some data and any other information I had so that she could include it in her presentation – the only thing was she needed it by noon her time which gave me just three hours to put everything together and send it across.
I received a thank you email and more details of the presentation. It was so good to hear from somebody else who is engaged in dialogue with decision makers in healthcare. And it was good to hear how she too had encountered the same obstacles as me in getting to meet the right people and putting the case for a thorough review of how B12 Deficiency is detected and treated. As I say in my latest book, in order to get things changed there first has to be an avenue of communication established. Without that communication there will be no understanding of the problems faced by patients in getting diagnosed early and treated adequately. And in order to establish that communication channel a number of stages has to be gone through:
- Identify the Decision Makers – not easy, healthcare is a complicated structure with a great number of institutions. Often any decisions made will only be after a series of vigorous meetings and consultations.
- Get past the ‘Gatekeepers’. This can only be done by establishing credibility – that’s why it was important that the PAS became a registered charity and is supported by various health professionals.
- Observe established protocols. This has been a real learning curve. Only by using established methods will the message be heard. It may not be the easiest way to get our message across but it is the only way.
- Be Polite. It’s simply no good going around waving you arms in the air shouting “it’s not fair” because nobody will listen. It’s important to be diplomatic – and diplomacy is simply an extension of good manners.
- Be Patient. I am, but by goodness it’s trying. Nothing is suddenly going to happen because of all of the above.
It’s taken ten years to get where we are. And where are we? Inside the doors of decision makers (just) – doors that have, for many years been slammed shut simply because I didn’t know how to do this lobbying thing properly. Progress is slow, but slow progress is better than no progress as the lady in Washington will attest to.
It was over a year ago that I received a telephone call from a Professor Jo Martin who is the National Clinical Director of Pathology NHS England, Professor of Pathology, Queen Mary University of London and the Director of Academic Health Sciences, Barts Health NHS Trust. She wanted to know if the society would work along with her department to develop a downloadable app that doctors can use to complete a training module on the new Guidelines on B12 and Folate. Naturally I agreed and we started to think of what would go into the module. It was anticipated that the app would take a few years to develop. Well, on Wednesday I was told over the telephone that the app was ready. This was remarkable news and I asked if it was possible that it could be made available by Saturday so that I could inform the members of the society at the AGM that was taking place in Birmingham. Prof Martin assured me that it would be. Just as we were setting up my presentation at the hotel where the conference was to take place I received an email telling me that the app was now uploaded and available.
This is a terrific piece of news as it addresses the problem of doctors not reading the new guidelines which are so useful as they address the problems with the current test. Now you might ask yourself why doctors aren’t reading the new guidelines. There are two reasons. Firstly there is a plethora of guidelines that are issued annually and doctors simply don’t have the time to read every one. Secondly, whilst the new guidelines on B12 and Folate are comprehensive they are consequently lengthy which makes them less than appealing to busy doctors. What was needed then was a compact test that would address the key points of the guide available in a downloadable form and, just for good measure, a carrot in the form of a credit that doctors can use to contribute to their Continuous Professional Development (CPD) portfolio.
And it’s live. I’ve just completed it. A series of ten questions that I sailed through – or so I thought. At the end of the test I was told that I had failed, but only on one question.
Want to take it? Well you will first have to download the software. This is how to go about it and this is what you can tell your doctor to do if he or she would like to attempt it – please be diplomatic when suggesting this!
If that fails just go to the google store, click on ‘apps’ and then search for ecpd
You should be directed to this logo
Download the software (you will need an android operating system)
Now you will need to register. It will first ask you for your First Name, Last Name, Email and a mentor email. Just choose one of your other email addresses or a family member. The mentor email is only if you want the results of the test sent to your mentor. You might not have a mentor but your doctor may well have one.
Your are then asked for a password and asked to confirm the password.
Next is asks who you are from a number of drop-down boxes. One of the options is ‘patient’.
Next you are asked about your organisation and one of the options is Pernicious Anaemia Society – use that if you are a member.
Finally it asks for your ‘interests’ – I chose Skill Set – quality improvement’ which seems a safe bet because I assume that the website will produce statistics that will look at how many haematologists or surgeons have used the site so it’s best to stay away from all of the other medical disciplines listed.
And then you’re in! You’ll find yourself on the ‘Priority Learning’ page but just use the search function to type in ‘B12 and Folate’ and you should be at the start of the test. You are given the option to be directed to the BCSH website where you can read the full guidelines which is what most medical professionals will do before starting the test.
There are ten questions in the test which could prove tricky if the person taking it hasn’t read the new guidelines which is the whole point of the exercise really. Good luck! Oh, and the question I got wrong – the one about mouth ulcers if you must know.
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.
So here I was, in Wrexham meeting with a GP and his Nurse Practitioner discussing how the Pernicious Anaemia Society would be able to help the nurse complete her Masters Degree that involved writing a Research Proposal. It was a straightforward debate and we are now participating in a mutually beneficial project. The old Chestnut of frequency of treatment came up and it was suggested that the problem may lie in the way B12 enters cells – a highly complex biological process involving lots of long words and intricate processes.
A week after the meeting the GP sends me a paper, just published on just that topic.
“Structural insights into the MMACHC-MMADHC protein complex involved in vitamin B12 trafficking”
An international team of Biochemists had produced the paper after a number of years researching the issue. And so yesterday I emailed the lead researcher who telephoned me yesterday afternoon. He was fascinated with what I had to say regarding patients suffering because they couldn’t receive more regular treatment and I suggested that he and his team might hold the answer to the age-old question of why some patients needed far more frequent injections than others. Anyway the upshot is that I’m travelling to Oxford in November for a full morning session with the team and he wants me to introduce him to some of the other scientists and doctors who are associated with the society.
This really is a remarkable development and offers the potential to provide the much needed clinical scientific evidence that will hopefully lead to a more flexible treatment regime for those patients who need more frequent treatments. I’ll keep you posted.
One of the first medical professionals to contact the Pernicious Anaemia Society was Dr Vinod Devalia, the then Consultant Haematologist at the Princess of Wales hospital in, of all places, Bridgend which is where I live and where the society is based. The first contact was by letter addressed to me. In it the doctor stated that he was eager to ensure that he was giving his patients the best possible treatment and asked me to contact his secretary and arrange a meeting which happened about a week later. Like most medical professionals he was astounded that patients were being mis-diagnosed with other complaints before eventually receiving an accurate explanation of their wide-ranging symptoms. And he was also surprised that the usually prescribed treatment of a 1ml/mg injection of Hydroxocobalamin was often inadequate for a great many of our members. He was genuinely interested in the work of the society and over the years has given his support on a number of occasions. He was the first guest speaker at our first conference, attended the opening ceremony of the first little office that we rented and again when we moved to our present premises. Two or three times a year we would meet up and discuss developments and current issues but always he craved the scientific basis that would provide the evidence that something was not right in the way the disease was diagnosed and treated. And that scientific evidence was, and to a large extent still missing (though there have been developments in this – see the next post after this one). I remember his horrified reaction when, at the opening of our first office, a member from the Rhondda Valley who was the manager of a forty bed care home informed him that eight of his residents had been told the previous week that they no longer needed injections as they were “over 80” and I remember how he immediately offered to intervene though there was no need as the manager, who was and is a member of the society, had already visited the health centre and spoken to the practice manager in a very controlled but stern manner.
I remember him asking me what I though of the new Guidelines which he was the lead author of and recall how he winced when I suggested that they, the authors, had washed their hands of the problems associated with adequate treatment and had ‘passed the buck’ onto the BNF. His defence, which was reasonable, was that there was not scientific evidence to back up my claims – nor is there because nobody apart from the Pernicious Anaemia Society is looking into it in a scientific way. It still strikes me as odd that the new Guidelines were written by the Consultant Haematologist in Bridgend following a meeting at the Department of Health with me, from Bridgend. It’s a small world as they say – but I wouldn’t like to have to paint it.
About a month ago I called his secretary to arrange a meeting. “You know he’s leaving us?” she said. I didn’t and when we met I asked why he was leaving to take up a new post in England. “It’s time to move on” he told me. He had been at Bridgend for twenty years. The reason I was meeting with him was to try and find a way in which GPs could be made more aware of the new Guidelines and he suggested that it might be a good idea that I contact the local trust and see if I could make a presentation at one of the regular training and update meetings. I’m still trying to get a spot but he also suggested that he could also update GPs whenever the opportunity arose. And it has arisen as one of the members of the society telephoned the office to tell me that his GP along with many more had been briefed on the new Guidelines by Dr Devalia, not in Wales but in the region where he now works. Hopefully I will be able to make a similar presentation soon.
We wish Dr Devalia well in his new hospital and hope that he continues with his good work.
Ha! That got your attention didn’t it?
Now let’s be grown up about this. People have been having oral sex since the early 1970’s though some commentators believe it all started in the social revolution of the 1960’s – the decade of decadence. Anyway it happens. And so what is this all about? Well, a leading investigator and proponent of healthy nutrition (who has written a glowing review of my new book – out on the 31st October in case you didn’t already know) has been in correspondence with a doctor who is a staunch advocate of a vegan lifestyle. And this doctor is vehemently opposed to dairy produce as are many other people who take the view that ingesting the milk of a cow as being totally unnatural, which, when you think about it is pretty weird – eating cow’s milk not being opposed to it. Why do we, as normal adults, eat the product of a cow that is meant to nurture the offspring of bovines? It is a topic that perhaps needs to be looked at. Anyway, this nutritionalist is having this conversation about B12 with the doctor who is completely anti-dairy.
“So if you are a vegan and do not even entertain the notion of eating dairy produce how do you ensure you receive B12?”
“Oral Sex – both seminal and vaginal fluid are rich in B12”
Now – I’m going to leave this topic as it is before we get into the details of how much B12 there is in these natural body fluids and how much needs to be ingested. I mentioned this to a doctor with an interest in B12 and her reaction was “It makes taking a daily tablet even more appealing”.
Suffice to say that this is a much debated issue among vegans. I did search the internet for a picture to accompany this post using the words in the title and immediately wished I hadn’t.
Let’s move on eh?
Here are some early reviews of my latest book due out on the 31st October ‘What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency‘
Patrick Holford: (www.patrickholford.com)“Very comprehensive, well written and understandable. A timely tour de force in bringing B12 deficiency and pernicious anaemia into full view”.
Prof. David Smith: “This little book will be essential reading for all who suffer from pernicious anaemia and for those who suspect that they might be deficient in vitamin B12. It is very clearly written in a style that is both entertaining and instructive. Although written for a lay audience, it is soundly-based on good science and could be read with profit by physicians, who need to be made more aware of this health problem”.
Liesel Schwartz: (www.lieselschwartz.com) “Meticulously researched and concise. It’s everything you need to know about this terrible disease. Read this book. It may very well end up saving your life!”
Dr Chris Steele (TV Doctor) :”Every doctor should read this book. Most doctors will learn something from it“.
I thought that would get your attention. And it’s true – the anaemia I once had (remember that anaemia means literally ‘lack of blood’ but in my case it was a lack of healthy red blood cells), has been cured thanks to artificially produced B12. And it gets better – not only am I am no longer anaemic but that anaemia that would have caused my death means that it is no longer ‘pernicious’. It’s thirteen years since I was diagnosed and treated, and the good news is that I no longer have Pernicious Anaemia.
However, if I didn’t inject myself with B12 then sure as eggs is eggs I would once more develop Anaemia which would ultimately prove to be pernicious – deadly. And that’s the same with all patients who have been diagnosed with Pernicious Anaemia and are receiving treatment – they will no longer have Pernicious Anaemia.
So where does that leave us? If we don’t any longer have Pernicious Anaemia what do we have? Simple – a patient who has been diagnosed as having Pernicious Anaemia might no longer have Pernicious Anaemia but he or she will still have a problem absorbing B12 from food and no matter what is done to treat the anaemia that will always remain a problem. Patients who were once diagnosed as having Pernicious Anaemia will always have Autoimmune Metaplastic Atrophic Gastritis. So, if your doctor tells you that you no longer have Pernicious Anaemia agree with him or her but point out that you still have, and always will have Autoimmune Metaplastic Atrophic Gastritis. It’s all in my next book – due out on the 31st October but already available on pre-order on Amazon…..in case you didn’t know.