Pernicious Anaemia Society
Take a look at the content of the conference that we are attending on Tuesday and Wednesday of next week
As you can see there are to be five days of presentations (20 minutes each) with accompanying discussions and debates.
Obviously the content of the papers will be far above our heads and so you may want to know what we are doing there and the answer is that we will be doing what we can only do – Raising Awareness of the problems patients with Pernicious Anaemia face in receiving an accurate and timely diagnosis along with adequate treatment.
Two years ago when we attended the same conference we had an orderly queue of clinical researchers waiting to speak to us. Hopefully there will be as much interest this year.
The conference presents us with an ideal opportunity to show how current problems with all manner of things to do with B12 is having on our members. We have already made some very useful links with some of the speakers at the conference and hopefully we will make a few more.
To ask Her Majesty’s Government what steps they are taking to ensure that a reliable test to assess the vitamin B12 status of the United Kingdom population is made available as a means to prevent serious and irreversible neurological damage before any mandatory fortification of flour with folic acid is introduced.
To ask Her Majesty’s Government what assessment they have made of the frequency at which patients with pernicious anaemia require vitamin B12 replacement therapy by injection; whether they have any evidence that patients are purchasing additional supplies from unregulated sources; and whether they will review current guidance.
To ask Her Majesty’s Government whether they have assessed the social and economic costs of misdiagnosis or late diagnosis of pernicious anaemia and other vitamin B12 deficiencies; and, if so, what they consider them to be.
The book is made up of 8 chapters and concentrates on what the new Guidelines from the British Committee for Standards in Haematology advise and the results of our own survey. Chapters are as follows:
1. Blood, anaemia, pernicious anaemia and vitamin B12 deficiency
2. Causes of vitamin B12 deficiency
3. Problems in diagnosing vitamin B12 deficiency
4. Problems in diagnosing Pernicious Anaemia
5. Problems with the treatment of Pernicious Anaemia
6. Pernicious Anaemia, Stomach Cancer, Neurology and Psychiatry
7. Living with Pernicious Anaemia
8. Current Trends and Future Developments
Along with the eight chapters there is also the following
Introduction – by ‘Dr Chris’ (Dr Chris Steele)
My first book was published in 2012 and it’s quite amazing just how much progress the Pernicious Anaemia Society has made in pushing the problems faced by members onto the health and political agendas and this latest book addresses these issues; and I have also made some remarkable discoveries about how Pernicious Anaemia affects all aspects of peoples lives and my latest findings are included in the book.
I had an exceptionally useful meeting yesterday in the upper House with the Countess Mar. Lady Margaret was fully up to date on the problems that we face in getting diagnosed and treated. The outcome of the meeting means that she will be asking Her Majesty’s Government (HMG) what it is doing to address the problems with the way in which Pernicious Anaemia is diagnosed, after all, the new Guidelines on Cobalamin and Folate issued by the British Committee for Standards in Haematology are nothing short of an admission that the current test to evaluate patients’ B12 is seriously flawed and the test to ascertain whether the deficiency is caused by an inability to absorb B12 from food is similarly not fit for purpose.
Things are starting to slip into place now though it has been a tortuously slow process and it might be an idea to recap on the series of events that have led to where we are now.
Back in 2011 we produced our documentary ‘Living with the Fog’. It was at a public screening of the documentary in early 2012 that the then Minister for State for Health (Long Term Conditions) Paul Burstow MP took questions from his constituents attending the screening and promised that he would arrange a meeting between the society and the Dept of Health.
That meeting took place in May 2012 – the meeting was scheduled to last twenty minutes but lasted over an hour and a half.
Following that meeting where we highlighted the problems our members faced in getting diagnosed the new Guidelines on Cobalamin and Folate were commissioned and these were published in early 2014. The Guidelines’ summary points pointed out that the current tests were not to be relied on and that physicians should treat the patients who they may suspect as having B12 Deficiency because of the danger of delayed treatment leading to severe and irreversible nerve damage. The Guidelines were well thought out and addressed all of the issues with the current tests and the potential new tests being developed. However, the authors stayed well away from the problems with many of our members not receiving adequate treatment according to their needs referring the matter to the British National Formulary.
Also in early 2014 the results of our members’ survey was published in the British Journal of Nursing which provided statistical evidence for the first time of the problems faced by patients in getting diagnosed and treated. I’m pleased to say that over thirty other papers written by clinical researchers have now quoted from our paper – so in that respect it’s doing what it was intended to do.
Now we have that evidence interested parties can now ask legitimate and relevant questions to health decision makers which is what will be happening in the near future.
The big question remains just what will the government do to remedy these problems? And that is where we, as a legitimate patient support group will present our case if, and it’s a big if, if we are asked to do so. We’ve got the evidence that the current tests are useless and, just as importantly we now have the evidence from our paper of just how these failings are impacting on one particular patient group. And these are two decent pieces of evidence, not just anecdotes that do not qualify as evidence; and it’s taken a long time to get these but believe me, to quote England Dan and John Ford Coley “if there was an easy way I would have found it”.
So we are now on what could be the final stage of getting our problems recognised and addressed but this, like our other journeys will, I suspect, be another long one. Fingers Crossed.
I don’t know why they do it but I’m glad they do – put themselves that is through 10-12 miles of intense
physical and mental challenges that culminates in a sense of achievement that is second to none. One of these special people is long time member of the PA Society Kate McMullin who is this year entering the challenge (it’s not a race) on behalf of the society. Please consider sponsoring her by clicking this link
Find out more about the Tough Mudder here:
Thanks Kate and good luck
Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.
We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands and that is what I will be talking about on Tuesday.
Following that meeting I will be meeting with the Treasurer of the Society to discuss future funding options in the usual haunt in Paddington Station.
I’ll try to update you on the outcome of the meeting soon.
Well that went well. In the end there were around twenty young trainee Psychiatrists along with experienced Consultants and a few other professionals. The talk lasted fifty minutes and I took ten minutes of questions. Five of the Consultants requested copies of the PowerPoint presentation and two have arranged for me to give the same talk at their hospital to their colleagues.
Here’s some of the comments I received:
“Thank you for your fascinating talk this morning; I wondered whether you would have any capacity to come and present it to our team at XXXXXXXs hospital“?
“My colleagues (both nursing and medical) were all very keen to hear more after I attempted to summarise what you had said”
“It was a very convincing and knowledgeable presentation. I would appreiciate if you could forward me your presentation slides“.
“Just wanted to special thanks for being a part of our study day. Your presentation was great. Just what delegates wanted. I have had excellent feed-back and you made that possible”
And all of this is being done with the sole intention of raising awareness of the issues surrounding B12 and Pernicious Anaemia.
Tomorrow I will be at Llandough Hospital in the Vale of Glamorgan to deliver a presentation to 40-50 Consultant Psychiatrists. The talk is titled:
“Should All Psychiatric Patients be Screened for Vitamin B12 Deficiency?”
The answer is “yes” but, as I found out when researching my latest book, it isn’t such a straightforward process and the talk will discuss the pro’s and con’s of screening for B12 – the major obstacle of course is that the current test used to determine B12 status in patients is next to useless. Still, I will be able to make the point that if they have patients who have Pernicious Anaemia and who have had their treatment stopped (more common than you would think) then the priority for doctors would be to quickly re-instate the patients treatment.
Hopefully my talk will raise awareness of the association between low B12 and psychiatric manifestations because, after all, as an ambassador for an established and respected patient support group that is all that we can do – raise awareness of the problems faced by our members.
That’s the title of my next book which is now almost complete and will be published in October of this year. Currently the first revised version is with the Editor before it comes back to me on the 8th June. Already there are new paragraphs to go in but these are already written.
The book is in eight chapters that each deal with a specific aspect of Pernicious Anaemia and B12 Deficiency. The chapter headings are:
1 Blood, Anaemia, Pernicious Anaemia and B12 Deficiency
2. Causes of Vitamin B12 Deficiency
3. Problems with Assessing Vitamin B12 Deficiency
4. The Problem with Diagnosing Pernicious Anaemia
5. Problems with the Treatment of Pernicious Anaemia
6. The Consequences of Pernicious Anaemia
7. Associated Health Conditions of Pernicious Anaemia
8. Current Trends and Future Developments in Pernicious Anaemia
There are several appendices including a glossary or terms, symptom checklist etc. along with a bibliography and sources of help for patients not being treated or under-treated.
The Foreword is written by “Dr Chris” Steele who is regularly to be seen on the ITV Good Morning programme every Thursday.
Advance orders for the book will be available from the middle of next month.
My thanks to all the researchers and academics who allowed themselves to be interviewed and to all those who allowed me to use their unique stories of their experiences to be used as case studies in the book. Without you it would not have been possible.
I have dedicated the book to the memory of Dr Manjeet Riar with permission of his widow Isabella. I know that a great many patients were helped enormously by this visionary doctor in the past few years.
So, Saturday morning saw me in the office going through the procedures that will form the basis for selecting members who will take part in the research project to investigate why some patients need more frequent injections of B12 than others, how the sample pots will be distributed and how they will be collated. Taylor Morgan, who was a volunteer when she was a Medical Sciences student and who is still volunteering with the society even though she now works full-time in a pathology lab of a local hospital and is completing her Masters degree in a topic associated with B12.
As we worked through the processes I became aware of a slight discomfort in my middle finger of my right hand and within the hour my finger had become painful. We left the office at 12 noon and by 1pm the pain in my hand was so severe that I made my way to the ‘GP After Hours’ service at the Princess of Wales Hospital in Bridgend. Within 20 minutes I was explaining to a GP what had happened and showing him my by now very badly swollen finger.
“It’s a serious infection” he told me. “I’ll prescribe you some antibiotics but, if it gets worse or starts to spread come straight back”.
At 4pm I was back and by now was in severe pain to the extent that I found it hard to sit down but preferred to wander around groaning and holding my right hand against my chest. I saw another GP who took a look at my hand and spotted that I had a red line running from my finger right up the top of my arm to my elbow and then twisting underneath my elbow before stopping just short of my arm pit.
“You’ve got a trace” he said. “I’m going to have to admit you – you could have severe blood poisoning if that reaches your armpit”.
Twenty minutes later I was in the Emergency department of the hospital explaining to an A&E Consultant what had happened.
“What painkillers have you taken” she asked.
“None – I didn’t want to mask the pain”
She shouted out to a nurse who appeared with a variety of pills and a syringe full of white clear liquid that she squirted into my mouth.
“You are obviously in a lot of pain” she said – “these will help”
I was found a bed in a single room and wired up to all manner of machines. By 1am in the morning the pain had got so bad that I went to the nurse station and begged for more painkillers but was told that I couldn’t have any more until 4am. The nurse in charge noticed that I was obviously in real discomfort.
“I’ll call a doctor” she told me and, after an hour wait suddenly a doctor appeared who was genuinely concerned at my condition.
“You really are suffering” he said. He then put his hand on my shoulder and told me that he was going to telephone his “boss” and that he would be back. “I assure you I will not leave you like this but will be back soon”.
Twenty minutes later he arrived with another of those syringes that was squirted in my mouth.
“I phoned the consultant who said to give you this really powerful painkiller” he said. Within five minutes I felt relief from the pain for the first time. It was now 2:45 in the morning and I was able to rest my arm on the bed. I shut my eyes and was just about to fall asleep when the nurse appeared again turning on the light as she came into the room.
“I’ve another doctor for you Martyn” she said
A middle-aged doctor sat at the side of the bed and asked me what had happened. I told him.
“You’ll be ok” he said. “These people will monitor you”
I asked who he was.
“I’m the consultant that they called” he told me. “They phoned and woke me and I couldn’t get back to sleep as I was a little worried about you so I thought I’d come in and take a look at you. Try and rest”.
I was discharged on Tuesday morning and though still tender, my finger has almost returned to its normal size.
What was the cause of the pain and swelling – well that’s another story…..