Pernicious Anaemia Society
So, we now have new guidelines for diagnosing Vitamin B12 Deficiency. The British Committee for Standards in Haematology have produced their new ‘Guidelines for diagnosis and treatment of Cobalamin and Folate disorders’. And this is the first update for twenty years. What led them to producing these new guidelines? Well, I like to think it has been the work of the Pernicious Anaemia Society. And although this hasn’t been acknowledged publicly the new guidelines were the result of a series of events that have taken place over the past eight years.
These events started in 2006 when the society was entered onto the register of the British Charity Commission. Although the society had been around for two years previously it was only when it was registered as a charity that people began talking to us and taking us seriously. And it was soon after the society obtained its registered charity number that I received a letter from the Consultant Haematologist at my local District General Hospital (DGH) stating that he had come across the website and he likes to think that he is treating his patients correctly and inviting me to get in touch with him. I remember telling the online Management Council Meeting about this milestone in the society’s evolution. For the first time we were being invited to enter into dialogue with a medical professional. I finally thought that we would begin to change things and achieve our aim of getting the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed.
The Haematologist turned out to be quite a solid supporter of the work of the society. He would attend the opening
of both of the offices that we occupied and he would turn up at our conferences. And he is one of the authors of the new guidelines.
The guidelines were due to be published in June 2012, but, following a public showing of our documentary ‘Living with the Fog’ which took place in January 2012 in south London which the then Health Minister Paul Burstow attended. The minister promised to broker a meeting between the society and officials at the department of health in London. That meeting took place in May of 2012 and was supposed to last twenty minutes. Carrie-Anne, who had organised the public showing of the documentary and I attended the meeting in Richmond House in the middle of May 2012. The meeting lasted just over an hour and a half rather than the timetabled twenty minutes. The officials whom we met included the Clinical Director for Pathology for the NHS and the immediate past chairman of the British Committee for Standards in Haematology. They were genuinely surprised at what we had to say – that there were serious issues with the way in which Pernicious Anaemia is diagnosed and treated. After an hour and a half we were asked to leave so that they, and the civil servant who was also present, could discuss what to do next. What transpired was that the new guidelines which were due to be published the following month were delayed. Now, whether or not that delay was due to the meeting is not clear, but I like to think that the current guidelines which acknowledge that there are serious shortcomings with the current test to diagnose B12 Deficiency and whether any deficiency is caused by lack of intrinsic factor would look an awful lot different if they had been published in June 2012.
The new guidelines (a summary of which can be found on the PA Society’s website) raise important issues surrounding the diagnosis of PA. It has taken eight years of lobbying to get medical professionals responsible for developing the new guidelines to listen to the society. And the most striking feature of the new guidelines is that they do not address the single most common complaint by members of the society – namely that the way in which PA is treated is completely inadequate for a great many of the members. Instead the guidelines state that the way in which the patient is treated (most notably the frequency of the injections) is a matter not for the British Committee for Standards in Haematology but for the British National Formulary (BNF). So, whilst we have new guidelines on the way in which Pernicious Anaemia is diagnosed, there is no guidance on treatment – the BCSH has,effectively, washed their hands of the matter that is the cause of most people’s complaint.
And so now where do we go? Well, I have had to think hard about the next steps. I was not sure I would be able to face another eight year battle to get decision makers to thoroughly review the way in which people’s B12 Deficiency is treated. It has been a hard decision to make but I have decided that I cannot leave the field with the job just half done. And so I have started the long journey of getting the treatment for Pernicious Anaemia thoroughly reviewed and by that I mean that patients should receive treatment according to their needs and via a method of their choice (astonishingly no thorough review has been conducted into the other forms of delivering B12 such as nasal sprays, sub-lingual tablets and sprays or even suppositories).
I have already begun. I have written to the Royal Pharmaceutical Society who produce the BNF in association with the British Medical Association. As yet, my initial communication has not been answered but I expected that. You see, if the past eight years of campaigning has taught me something it is that getting things changed in medicine takes a very long time.
Last week, my local MP, Madeleine Moon, who is a great supporter of the work of the PA Society submitted two questions to the Minister for Health. One was regarding the availability of the generic form of the injection (the manufacturer has stopped making it and there is a shortage of the generic version) and one asking what steps he was taking to review the current test being used to determine deficiency. Yesterday afternoon (Wednesday) I received a call from the MP’s secretary asking if I could meet Madeleine today at 12. I said yes and Madeleine is coming to the office today at midday. I wonder if she has had a response? More tomorrow!
Another productive meeting and another five questions formulated to be submitted. I’ll let you know the outcome.
There have been numerous reports of UK members taking their prescription for their B12 injections to pharmacies only to be told that the Generic B12 is no longer being manufactured and that there is a waiting list for the branded B12. Yesterday I contacted one manufacturer of the Generic B12 and was told that production is still on-going but they are only contracted to supply hospitals in the UK and not pharmacies. So there is plenty of generic B12 being made but it doesn’t seem to be working its way into pharmacies. I also contacted Boots the Chemists who told me that they had plenty of stocks of the branded B12 and if anyone was told that their injections were unavailable they would have to wait a maximum of three, maybe even four days, before the injections were back in stock. I also spoke to my local Sainsbury’s pharmacy who told me the same thing. I then contacted Alliance Healthcare, which is the biggest pharmaceutical wholesaler in the UK told me that the generic B12 was not available (though they don’t know why) but that they had ample stocks of the branded products. Again, they assured me that if there is any local shortage then it would be rectified within a few days.
I then contacted the Department of Health at Skipton House in London and after explaining the problem was put through to the Distribution Team who are “very concerned” about any local shortage and yesterday (Friday) they had contacted all licensed manufacturers of B12 and asked for a written explanation of why there seems to be local shortages. At five minutes to five yesterday a member of the Department of Health’s Distribution team telephoned me and told me that they hope to have a full explanation for any local shortages from the manufacturers on Monday. I will keep you informed.
It seems to be a case that there is a distribution issue involving the injections rather than a shortage of the injections.
If anyone is not able to obtain their injection and develops any neurological symptoms (numbness, pins and needles etc.) you are advised to make an emergency appointment with your doctor to discuss this and mention the NEQAS bulletin which can be downloaded from the society’s website.
I will keep you posted on the Department of Health’s report on Monday/Tuesday.
I took a call from one of the script writers of a popular daytime television programme that centres around a General Practice. He asked for more information about Pernicious Anaemia – he had already visited the website forum etc. It took an hour to get him fully up to date and he told me that he and his colleagues are going to write into the series the story of a woman who develops all of the symptoms of PA but whose blood tests show nothing untoward. The story line will start soon and develop over the next six months with the patient’s condition deteriorating slowly but steadily until she develops quite serious neurological damage. Hopefully this will help get our message across that there are serious issues surrounding the way in which we get diagnosed and treated. More about this as it happens.
Oh – and I cannot give you the name of the programme because the writers are afraid that others might steal their idea. But I will let you know the name when the storyline begins. Members outside the UK will be able to watch the episodes on BBC’s i-player.
It was Tuesday of this week that I received a telephone call from a non-member of the society who had left an answerphone message the day before stating that he would try to contact me again the following day.
The conversation began as many begin with the caller (we shall call him Bill) stating that he didn’t know whether he should join the society because he hadn’t been given a firm diagnosis. Bill lived in Washington, Tyne and Wear.
“I have been going around in circles for years” he said. “I’ve been given anti-depressants, had counselling and been told for years that I was imagining my symptoms. Then, three weeks ago I went to a different doctor to the one I usually see. He listened to my symptoms, of how I felt tired all the time, couldn’t concentrate, was irritable and suffering severe mood swings and generally losing the will to live.
“I had heard all of this before – but then he shocked me: I was stunned: I couldn’t even reply to him:
‘The fact is that the test is next to useless’ he said. I just sat there not knowing what to do. ‘I’ve seen this before’ he said before telling me that I was to have six injections over two weeks and then an injection whenever I felt I need it. ‘It’ll take a while before we hit on a treatment regime that will suit you’ he said.
“Well, after the second injection most of my symptoms disappeared. I still get tired in the afternoons but when I’m awake I’m awake” he told me.
I told Bill that he most likely had Pernicious Anaemia and that his doctor should be congratulated. He hasn’t joined, and I hope he continues to receive treatment based on his symptoms and not an unreliable test. I just hope that the doctor concerned doesn’t leave the practice any time soon!
The Department for the Environment, Food and Rural Affairs (DEFRA) are still considering fortifying flour with Folic Acid. There has been some developments in this area. Niacin, Thiamin, Iron and Calcium are all added to bread. This practice began in 1940 when millers were required to extract 80% of flour from grain. This was reduced to 70% in 1954 but it was considered wise to keep adding the nutrients to compensate for any dietary deficiency. Calcium was added to flour to compensate for the lack of dairy products in the diet of the population due to strict rationing of dairy products. All milled flour (with the exception of wholemeal) is required to have Niacin, Thiamin, Iron and Calcium added to it.
The Scientific Advisory Committee on Nutrition (SACN) were asked to look at whether this practice should be continued and they concluded:
“In order of public health nutrition importance, the case for maintaining the mandatory addition of calcium to wheat flour (other than wholemeal flour) is strongest, followed by iron. Evidence to continue the mandatory addition of niacin and thiamin to wheat flour (other than wholemeal flour) is much weaker”.
So it could be that the mandatory fortification of flour with Niacin and Thiamin may be discontinued though Iron and Calcium will remain. Thiamin is also known as Vitamin B1; Niacin is also known as Vitamin B3.
And that brings me back to the issue of fortifying flour with Folic Acid. No decision has yet been taken – here’s what the SACN have to say:
In 2006 SACN concluded that mandatory fortification of flour with folic acid would reduce the risk of inadequate folate status in women most at risk of neural tube defect-affected pregnancies. The decision whether to introduce mandatory fortification of flour with folic acid is with government Ministers.
So they have simply stated that adding folic acid to flour would “reduce the risk of inadequate folate status” in pregnant women – thereby reducing, quite significantly, the risk of the foetus developing neural tube defects (such as spina bifida). So why the delay? There have been significant reductions in the number of babies being born with neural tube defects where folic acid is added to flour (both Canada and the USA have been fortifying their flour for years with an accompanying decrease in the number of neural tube defect births) and so really it should be a no-brainier.
Well there is a drawback – high levels of Folic Acid can mask one of the indicators of B12 Deficiency – enlarged red blood cells. When a Full Blood Count is conducted B12 is not analysed; instead doctors will look for enlarged red blood cells (macrocytosis) as an indicator of either alcohol abuse or low B12. So does that mean we shouldn’t be fortifying flour? Well, if all patients with low B12 status had macrocytosis then there would be a case for not fortifying flour. The fact is that only around 60% of patients with low B12 levels will display any macrocytosis. So should the Pernicious Anaemia Society be against of for folic acid fortification? This has been a question that we haven’t really answered for many years. I think I now know the answer.
The evidence that folic acid fortification causes a decrease in the number of babies born with Neural Tube Defects is compelling. Over fifty countries in the world now have mandatory fortification of flour. And according to the Flour Fortification Initiative those countries that have introduced folic acid fortification have seen Neural Tube Defects fall by between 30% and 60% and this fall not only leads to healthier babies but also reduces the cost of healthcare in dealing with the consequences of Neural Tube Defects.
So what should we be doing? I believe, and this is my own personal opinion and not that of the PA Society, I believe we should support folic acid fortification with one proviso. The serum B12 test – although the current test is flawed and not really fit for purpose – should be made part of the Full Blood Count. Something will have to be done about the current test and a replacement introduced which should, hopefully provide doctors with a more accurate picture of the patient’s B12 status.
Fortify flour with folic acid but introduce a better test for serum B12 and make that test part of the Full Blood Count – a win win situation.
Chairman’s End of Year Report: December 2013
It has been suggested, by various people associated with the society, that I compile a short report that will allow members of the society, and their families and friends, to know what progress has been made in our efforts to obtain a thorough review of the way in which Pernicious Anaemia is diagnosed and treated. The evidence that the current test to determine B12 status in patients is flawed is overwhelming; and so is the test to determine whether any deficiency is caused by Pernicious Anaemia is also flawed. And whilst many medical professionals and health decision makers are aware of the serious shortcomings of the tests I have made it my mission to inform them of the consequences of those shortcomings. It is the society that has to deal with the fall out of the current tests’ failings – and we do so on a daily basis. Tales of misdiagnosis, non-diagnosis abound on the society’s online forum, as they do on the many social media sites that deal with B12 Deficiency and Pernicious Anaemia, and these tales of woe are due in no small part to the failings of the current diagnostic procedures. What I have busied myself with this year is getting those who are in a position to do something about the present situation to understand how the current situation is causing misery to millions of people worldwide who are suffering because of the problems with diagnosing PA.
The people who suggested I write this report are aware of the work that the society does – but they also point out that not many people are aware of what is going on and are unaware of mine and others’ efforts to help change the current situation. And so that is the reason why I have sat down and produced this short report. I hope that it helps all those who read it to understand what the PAS is about and what it is trying to do. In order to keep this readable I have, by necessity, had to exclude some events and developments but I hope I have covered the main occurrences that have taken place in the last twelve months.
The year started out promisingly with the news, just before Christmas, that we had been successful in applying for a Big Lottery grant to update the website, re-brand the society and develop a database of members. We would like to than Louise and Sarah, the two volunteers who gathered evidence of need for the project, completed the substantial paperwork and made sure that all of the other information required by the lottery fund was enclosed with the application. This other information included audited accounts for the previous year, a set of Management Accounts for the past six months, evidence of the society being registered with and compliant with the requirements of the Information Commissioner, an updated and adopted Data Protection Policy and various other items including verified quotations with detailed price components. Tastic Multimedia were way ahead of the other contenders for the job and the contract was awarded to John and his team in north Wales – the same team that has been with us from the very beginning of the society.
We were very lucky that the re-branding was carried out by the family friends of another of our volunteers – Joanna. Using her family contacts an extensive Search Engine Optimisation was completed in the first month of 2013 which identified what search terms people used to find our site. These search terms would be important for two reasons. Firstly they would help us identify what information people would want from the website. For example ‘what is Pernicious Anaemia’ was a common search term used and so we would have to build into the remit of the website design a page that was free to access and which would explain what Pernicious Anaemia is. Secondly, the Search Engine Optimisation would also throw up some search terms that were not common but which would need to be linked to our site – ‘numbness’ and ‘pins and needles’ are good examples of this.
Another of Joanna’s contacts was a family friend who was a Graphic Designer and who agreed to produce a new logo for free – it was his contribution to the charity. However, before he could go ahead and produce a nice shiny new logo he made it clear that he would need the results of several focus group discussions where the members of the group would describe, in some detail, what qualities they thought the logo should represent. Several focus groups were held in and around the society’s offices and we finally arrived at six qualities that the new logo would reflect. These six qualities were: Reliable, Trustworthy, Dependable, Friendly, Hopeful and Understanding. Armed with these qualities the Graphic Designer produced five new designs. But it wasn’t a case of someone just choosing the one that looked the nicest. Another round of focus groups involving members and volunteers at the society considered each design in turn and then the group members awarded points to each design based on how the design reflected the six qualities mentioned above. The winner, by quite a considerable margin was the new logo that you see at the top of the page.
After a few delays and several hiccups the new website and logo went live at the beginning of April.
Our membership grows by an average of 1.6 new members a day though there are peaks and troughs of when members join – more members join at the end of the month than at the beginning. We were still getting ‘paper members’ at the beginning of the year but the decision was taken that non internet members would have to be phased out simply because we lacked the physical resources to deal with this category of membership. The new website does not have a printable form to join which potential members would download and send to the society’s office. Despite this form not being available we still occasionally get the odd new paper member but it remains a mystery where they obtain the old style form from. One of the most costly exercises involves printing 240 hard copies of the newsletter that then has to be sent by mail to each of the paper members. The cost of the printing and postage comes to around £400. We, as a society made a commitment to the paper members that their initial joining fee of £20 for lifetime membership would be just that – for life and so we continue to honour that commitment but encourage all new members to join via the website. At the time of writing we have 8,313 online members worldwide.
Following a meeting with a GP at the B12 Conference in Nancy, France in 2012 Dr. A McCaddon agreed to take the lead and analyse the results of our survey of over 1,300 of our members’ experience in getting diagnosed and treated. Working with a colleague and co-author of a number of published research papers and Dr. Fiona Porter who devised the survey in the first place, Dr. McCaddon started to ‘clean up’ the data and write up the findings in a research paper with a view to publication. In April of this year the paper was finally ready to be submitted and the first publication to be offered the results of the survey was the British Medical Journal who promptly rejected it. It has since been rejected by three other journals and is currently being considered by another. Our thanks go to Dr. McCaddon and his colleagues for their perseverance. Every journal requires different methods of presentation of the data and so the effort that is being carried out on our behalf is quite considerable. Hopefully the survey will be published soon as this will mean that the often appalling way in which we are diagnosed and treated will be addressed by health decision-makers.
SHORT & LONG-TERM GOALS
The Trustees of the society met in Birmingham in August and agreed to a new strategy for the society that would involve a series of short term goals and a long term goal which would form the focus of activity for the society in the short and long term.
There are three short term goals that focus my attention on a day to day basis.
1. Provide Information and Support to members. There are several ways in which this takes happens; firstly there are the daily telephone calls that are made to the society’s offices. As I still get very tired in the afternoons I am only in the office from 8am until 10:30 or 11.00 am most days. My first job every morning (or the job of our wonderful team of volunteers) is to listen to the messages that people have left on the telephone message machine. Sometimes these can be as few as two or three, but sometimes they can be as high as 23. These are calls from patients, or patients’ family who are often desperate to get some help and support. The vast majority are from patients who are frustrated with the way in which their condition is treated. No matter how many messages are left I will not leave the office until I have dealt with every one. Problems occur if the messages are many or involve long calls as any callers to the office when I am returning calls will get an engages signal. Please be patient if you experience this. The nature of incoming calls, as well as any calls made following left messages from the day before, varies greatly from just general inquiries to those who are desperate for help in some form or other. Some of the calls are very draining as the circumstances that the patient finds themselves in are complex and have been going on for many years. And there is only so much I can do to help them. One development that has proved to be successful this year is the recently developed advocacy service. In the U.K. there has been a radical overhaul of the way in which different social benefits have been awarded and many of our members have had their entitlement to benefits reviewed. Often the outcome of the review has been that the patient has had his or her benefits withdrawn and that leads to an appeal against the decision. Seven times this year I have appeared in person at such appeals and I’m pleased to report that in five instances the benefits were re-instated. I am not asked to give evidence but I like to think that just being there, and the tribunal officials being aware of what I do, has meant that our members are not simply ignored or disregarded. On a few occasions I have been asked to clarify some of the symptoms suffered by our members. It really has been an eye-opener to discover just how little those who are in positions of authority know about our condition. As well as appearing as an advocate I have also written around twenty letters to employers pointing out the nature of the on-going symptoms even after treatment to correct any B12 deficiency has started. Last week I accompanied a young lady member (who is a student nurse) when she attended an appointment with a haematologist. It was the usual story, there was a family history of PA, she had all of the symptoms including numbness and pins and needles in her feet and hands yet her serum B12 was a couple of points above the threshold used to determine deficiency. Before the appointment we discussed what we needed to point out to the doctor and she was well prepared with the NEQAS statement and her list of symptoms. The result was that she was given an injection there and then, and prescribed more injections, given syringes and a lockable sharps bin and taught how to self-inject every other day for two weeks then she will go onto weekly injections and then….. well, we’ll just have to see. She didn’t get a diagnosis but at least she got treated according to her needs.
2. We also offer the support via the telephone to Jane our nursing sister and we still have the remarkable online forum where Pat and her team of Moderators do such a magnificent job in dispensing information and guidance to some desperate members. My thanks to all of those involved in the forum for their relentless patience and hard work.
3. Finally, the new website also allows non-members access to information about their condition as this was shown by the search engine optimisation report to be the single biggest reason why people arrive at our site. More detailed information is available only to members but those who simply want a comprehensive account of their often newly diagnosed condition can get what they want without being a member.
2. Raising Awareness of the problems with the diagnosis and treatment of PA.
This has always been the most important of issues for the society. It’s hard for us, as sufferers and observers of how others are affected by the late or non-diagnosis to understand why the vast majority of medical professionals and decision makers are completely unaware that there are serious issues with the way in which PA is diagnosed and treated. And it is in raising awareness among medical professionals of these problems that I can report some success. This year there have been four ways in which we have been able to get our message across:
1. Together with Carrie-Anne Carr I had lunch with Sir Michael Rawlins in May 2013 at the Royal Society of Medicine. Sir Michael was until April 2013 the Chairman of the National Institution for Clinical Excellence (NICE) and it was he who was responsible for actually setting up NICE. He listened intently to what we had to say and I was able to present him with a report that I had written specifically for the event which included some of the findings of the Survey, the published research papers that show that the current test for B12 and Intrinsic Factor Antibodies is not fit for purpose and the Bulletin issued by the National External Assessment Service that was issued at the end of April. At the end, over coffee, I asked what more could I do?
“Write to everyone who you can think of” was his reply; Which I then did. I wrote to all of the Ministers of Health in the UK, the Chief Medical Officers in the UK, the President of the Royal College of Pathologists, the Chairman of the British Committee for Standards in Haematology (no reply – actually that was the third time I had written to them and have not had any reply), the British Society of Haematology (no reply) and the Secretary of State for Health. The politicians and Chief Medical Officers all replied stating that they were referring the matter to other committees – although they did all thank me for raising the matter with them, but the only other reply was from the President of the Royal College of Pathologists who assured me that the college “had done everything we can to make the Medicines and Health Care Regulatory Agency aware of the problems with the current tests” and he suggested that, if I hadn’t already done so, I should write to the Chairman of the MHCR to raise my concerns; which I did, but, to date, have received no reply.
Another interesting and potentially useful consequence of the meeting is that Sir Michael offered to contact the Dean of the Royal Society of Medicine to register the society to participate in a ‘Medicine and Me’ event. These events are designed to bring patient support groups and clinicians together for a full day of discussion and talks. Unfortunately there are no free days in 2014 but I have heard from the Dean who is scheduling us for a full day at the RSM in 2015.
2. A second interesting development this year has involved Nurses. On four occasions I, along with Carrie Ann, have given hour-long lectures to Second Year trainee nurses at the University of the South Bank in London. Whilst nurses are not responsible for diagnosing PA they are involved in treating the condition and the talks were warmly received.
My thanks go to Carrie Ann for her continued efforts to help us raise awareness of our problems. Points i and ii above were solely due to her efforts.
3. The second of my books was published in late October and is meant to complement my first book published in 2012. Living With Pernicious Anaemia (published by Hammersmith Health Books) was never meant to make me millions of pounds (and it hasn’t disappointed) but rather, like my first book Pernicious Anaemia: the forgotten disease it was meant to raise awareness of the issues surrounding the diagnosis and treatment of PA. And it has had some success. Living With Pernicious Anaemia highlights the fact that, contrary to what most people think, the symptoms of the disease do not simply disappear once replacement therapy B12 injections are started. Many people, perhaps the vast majority of patients, will still experience some or all of their symptoms after treatment has begun. But perhaps more importantly, the book details some of the findings of the survey which highlights the problems with the diagnosis that surrounds Pernicious Anaemia. In this way, in a limited way, the results of the survey have been published. The book is no substitute for the survey being published in an established, peer-reviewed journal, but hopefully it will do some good.
4. Finally, we have our very own Tweeter who is doing a tremendous job of raising awareness of the problems we face among medical professionals. And this, along with the efforts of the Scottish Parliament and meetings with senior Directors of various departments within the UKs Department of Health has meant that slowly but surely our message is getting out.
At the meeting of the Trustees towards the end of the summer it was agreed that the society has grown so large that it is no longer feasible to rely on volunteers to deal with the day to day business, or short-term goals, of the society. Currently the society does not employ anyone and the demands on my time are now far in excess of what I can give. And so, with the help of one member in particular, we have made three separate applications for funds from grant-giving trusts to employ four Regional Development Officers for the U.K. These Development Officers will be responsible for a defined region and would co-ordinate the work of the society in these areas in relation to raising awareness and providing help and support for patients and their families and friends. This will leave me free to further nurture existing contacts at national level and develop more contacts and awareness at the heart of health decision making. Hopefully the grant applications will be successful and the society can look forward to a new chapter in its development.
Following the Round-Table Dinner and Discussion that was hosted by the society the evening before this year’s conference, three new research collaborations have been formed. Working with the society, clinical researchers have now produced research protocols that, in two cases, seek to prove a theory. One of these projects is looking at why some patients will need far more frequent injections than others and funding has been secured to prove the scientists hypothesis – ‘proof of concept’. Another project is looking at alternative methods of delivering replacement B12 that is more suited to the individual needs of the patient. The third project is seeking to prove that replacement B12 (in patients who do not necessarily have Pernicious Anaemia) can help prevent or reverse the worst effects of Dementia. I cannot give more details than this as the society has signed ‘non-disclosure agreements’ with two of the researchers and their universities, but I will keep you informed of any developments. Now that the protocols have been written it is time to apply for research grants to fund the projects and this is being done by the respective researchers and their universities.
I would like to say a great big thank you to all of my fellow volunteers, be they our helpers at the office, the Trustees, the forum Moderators, our Fundraisers and anyone else who has helped us achieve what we have achieved this year. Finally, I would like to thank you, our members, for your putting your trust in me to represent you and the society. Hopefully 2014 will be as, or more successful than 2013. I wish you and your families a very Happy New Year.
©Martyn Hooper 2013
I didn’t go into the office on Monday – I had to take a day off. Yesterday (Tuesday) I went in early and found that thirteen people had left messages on the answer machine. I know from past experience that many of them would be about the frequency of injections and true to form eight of them were – including one from a gentleman in France whose legs are numb, he has pins and needles in his hands and has difficulty walking – he has to use a walking frame. He was on three-monthly injections.
Then there was the gentleman from “just south of Warrington” who had been giving himself an injection of B12 in Hydroxocobalamin form every two weeks for the past twenty five years. “There’s a new GP who has refused to write me a prescription for more than one injection every three months. I’m worried sick as I know I start to deteriorate after two weeks – so I don’t know what I’ll be like after two months” he told me when I telephoned him back.
What would you tell him? I’d be interested to hear what you would say bearing in mind that as the Chairman and therefore representative of a charity I cannot advise him to break any laws or run contrary to what his GP has told him…….over to you!
Here’s a report of the content of the recent conference.
My thanks to Margaret Harty for producing this report.
Well – that’s over for another year. In the run up to the event I started to understand why I had been forced to give up my career – the information overload was still a problem and with a hundred of different things to do to ensure that the conference was a success I soon realised my limitations. In the end the conference proved to be our most successful ever with all of the speakers benefiting from the round table discussion and dinner that was held the night before.
THE ROUND TABLE DINNER:
I have gradually become aware that whilst there are a number of Academics, Clinicians and Clinical Researchers who are not only aware of the problems with the diagnosis and treatment of Pernicious Anaemia but also they are working on various aspects of the problems. Whilst many of these are talking to me, they don’t seem to talk to each other. And this is why I came up with the idea of a Round Table Dinner and Discussion where we, as a society, could put certain questions to the group with the hope that they might agree to a solution or at least a way forward. The Dinner was held at the Bryngarw Country Park Hotel who gave us extremely favourable rates. I invited the following:
Professor David Smith – Emeritus Professor of Pharmacology, University of Oxford.
Professor Helga Refsum – Professor of Nutrition, University of Oslo, Visiting Professor of Nutrition, University of Oxford.
Professor Martin Warren – Professor of Biochemistry, University of Kent
Dr Andrew McCaddon, MD, General Practitioner
Dr Anna Guildford, Senior Research Fellow, School of Pharmacy and Bio-molecular Science, University of Brighton
Dr Joseph Chandy, General Practitioner, B12 D Group, Durham
Dr Hugo Minney, B12 D Group, Durham
Dr Siddharth Banka, Clinical Senior Lecturer, University of Manchester
Dr Willemina Rietsema, General Practitioner, Oxford
Ms Petra Visser, Stichting B12 Tekort – Dutch B12 Support Group
The purpose of the dinner was to introduce the various attendees to each other. The real discussion would take place after dinner when the guests would retire to the upstairs lounge of the hotel where Carrie-Anne Carr would ask the group to discuss four main questions: -
What can be done to improve the diagnosis of Pernicious Anaemia?
Why do some patients require more frequent injections than others?
What other methods could be used to deliver replacement therapy B12?
What are the main consequences of the problems with diagnosing and treating Pernicious Anaemia?
I wasn’t present at the discussion, but I received a report the next day and it seems that the questions were not able to be answered simply. The discussion revolved around complex biochemistry and fundamental medical procedures. I didn’t expect any concrete answers to the questions and I was not disappointed in that respect – but the discussion did make every guest aware of the problems with the diagnosis and treatment of Pernicious Anaemia; and perhaps more importantly how these problems were impacting on the everyday lives of patients. The cost implications of the problems were estimated to be costing the UK’s NHS around £1 billion each year.
It was reassuring to note that the guests not only addressed the questions set but set about discussing them with enthusiasm and vigour. I believe the whole event was a success and I know from telephone conversations with those who had been there that all participants learned something new to take back to their various institutions and laboratories where I am sure they will cascade their new found knowledge to their colleagues.
It took an enormous amount of organising to make this happen. Arrangements began back in April when the decision was taken to host the event at our offices – simply to save money not only on the accommodation but also on the catering. Then there was also the issues of taxis to and from the office and reasonable overnight accommodation that had to be taken into consideration – it was obvious that, because the size of the office meant we could accommodate over 100 people, it would be sensible, and easier, to host the event in south Wales. What really made up our minds (I say our because Carrie Ann was involved in organising the conference) was the fact that we couldn’t guarantee that holding the conference anywhere else in the UK – at a more central venue – would mean an increase in attendees. We decided that the office would host the conference.
The first thing we had to do was to choose some of the round table delegates to present a ‘plain English’ version of their research interest at the conference. I am pleased that 7 of the round table delegates agreed to give a short presentation. Petra Visser who organises the Dutch B12 Group also agreed to speak. Next I had to put together some kind of running order for the day which would take into consideration the speaker’s train times and distance from south Wales. Once that was done it was a case of getting their presentations ahead of the day so that they could be loaded onto a computer ready.
Then there was the catering – who was going to do it? What was our budget? We toyed with the idea of making a load of sandwiches ourselves but then decided to buy in ready made ones from the local supermarket. We then had to go about asking people to register and, in the event, around 70 people registered for the event but, on the day, only around 40 people who had registered turned up. And there was another 40 people who turned up on the day without registering. Anyway, our estimates were good and on the day everyone had something to eat.
One of our volunteers agreed to look after the audio visuals for the day and this was helped by the fact that his father, who is a sound engineer, agreed to help which he did by setting up the audio for the day. However, when we came to the morning 0f the conference the microphones simply wouldn’t feed into the video and we had to rely on the camera microphone to capture the sound. On top of that the lighting was inadequate because the sun decided to hide which meant that the video was dark. Still, it was a good first attempt and it did record even if it wasn’t perfect.
Then there was parking reservations to organise, special dietary needs, hiring of extra chairs, roving microphones, t-shirts for the volunteers and other merchandise – a hundred different things to think about. In the end everything worked out and all those who attended commented on what a wonderful time they had. Maybe we might do it again!