Chairman’s Report December 2012
When I started the Pernicious Anaemia Society back in 2005 I had in my mind a set of objectives that would have to be met in order for the society to exist and flourish. In those early days the objectives were easy to identify and could be found only in my head. Nowhere were they written down or discussed. They were obvious, common sense targets. Firstly I would need a team of reliable and safe Moderators who would take on the task of meeting the growing demands made by people who had signed up to the online forum. Thankfully volunteers who had experience of this ever popular and growing media kindly offered to take on this often thankless job. I am pleased to report that many of the original Moderators are still there dispensing advice, help and support to those who are newly diagnosed with either B12 Deficiency and/or Pernicious Anaemia. I, along with all the other members of the society remain indebted to Pat and her team who go about their business in a professional and friendly manner; never moaning and forever dispensing their excellent advice and help. It is very easy to underestimate just what a difference they make to newly diagnosed members or those who are struggling to receive a diagnosis and adequate treatment.
The second unwritten objective that I had was to recruit a team of people who would become Trustees in order to meet the third objective which was to turn the society into a registered charity. The society has eight Trustees who oversee the work that I do on a day to day basis. It is the Trustees who agree and underwrite the Policies on Child Protection, Vulnerable Adults, Welsh Language, Data Protection and Sustainability along with agreeing to the Strategic Plan and annual Business Plan. The Trustees meet four times a year and anyone who is a member is welcome to attend these meeting.
Once those three objectives had been achieved it was necessary to identify the next set of goals. This proved trickier and deciding whether they had been achieved or not was not as easy. This is because the objectives were based on the rather vague values of raising awareness of the existence of the society among the general public and medical professionals. I remember the first time a clinical researcher contacted the society with the aim of recruiting our members to take part in some research – I knew then that we were being taken seriously and that we would start to become a credible patient organisation. It was a milestone in the development of the society and it happened in 2007. Since then we have raised our profile among the medical fraternity by hosting and attending conferences, becoming members of various medical panels and boards and taken part in various research programmes as well as being co-applicants for further research applications. It hasn’t happened overnight but we are now seen as a respectable patient group who have genuine grievances. And we are now being listened to by decision makers in a number of influential organisations.
It has been this year, 2012, that we have made most progress in achieving the two most immediate goals identified by me and endorsed by the Trustees. These two objectives are to:
- Raise awareness of the serious shortcomings of the current test to determine B12 Deficiency in general and Pernicious Anaemia in particular in order that a more efficient test be developed that will diagnose PA quickly and accurately.
- Raise awareness that the current treatment regimen does not suit everyone and that patients should receive treatment according to their needs.
Achieving the two objectives would be impossible if nobody would listen to us as a society which is why it was important to first of all gain credibility among medical professionals and decision makers. Over the years I have learned to become a diplomat for the society and it has proved worthwhile. This has been helped by the fact that we now have over seven and a half thousand members with the number of new members joining rising rapidly whenever we receive any publicity. However, getting our voice heard has to be done in a way that does not raise any hackles. The way in which we are diagnosed and treated is scandalous – but we cannot make a scandal of it. We have to be seen as being reasonable.
The way in which we are getting our message across is being done in a number of ways. Firstly there is the Survey that over one thousand two hundred members have completed. Devised by Dr. Fiona Porter-Smith, one of the society’s Trustees, the survey is now being analysed by another GP from north Wales who completed his M.D. on B12. The Doctor agreed to analyse and publish the survey only if he could recruit the help of one of his colleagues in the NHS who specialises in Health Statistics. That analysis is now taking place with a view to publishing their results in a respected medical journal in late spring. The importance of this cannot be over emphasised. It provides us, and medical professionals, with the evidence, produced in a professional way by two respected figures, of the problems we face in being diagnosed and treated adequately. No longer will our findings be based on hearsay, (which we are often criticised for) but they will be produced in a scientific format and be open to peer assessment. When the results are published the society will have reached another milestone.
A second way in which we are raising awareness of our problems is via the Scottish Parliament. Andrea McArthur’s petition to the Scottish Parliament continues to be debated. And whilst progress is slow (it’s now over a year since the petition was first presented by Andrea to the Petitions Committee) it continues to receive the support of the Scottish Parliament and the Minister for Health for Scotland has been instructed to ensure that this society is involved in any review being carried out by the British Committee for Standards in Haematology. Getting our problems discussed by the full Scottish Parliament was another enormous milestone that was met this year. Well done to Andrea for her initiative and hard work.
In 2011 we completed the documentary Living With The Fogand in early 2012 a public viewing of the film was organised by Surrey Support Group leader Carrie-Anne Carr (Carrie is now also a Trustee). Held in the Salvation Army Centre in Sutton, Surrey, the film was seen by the then Minister for Health and MP for Sutton and Cheam, Paul Burstow MP. After the screening Mr Burstow promised to arrange a meeting between the Society and Officials from the Dept. of Health. That
meeting took place in May at the Dept. of Health’s offices in Whitehall. Present were myself and Carrie-Anne, Dr Ian Barnes, the National Director for Pathology at the NHS and Dr Mike Galloway, immediate past chairman of the British Committee for Standards in Haematology. The meeting lasted much longer than originally intended and it was clear that the two scientists were unaware of how the way in which we are currently diagnosed and treated was having an impact on people’s lives. The British Committee for Standards in Haematology were due to issue new guidelines on B12 and Folic Acid in June – these guidelines have now been postponed until June of next year. This could be due to the discussions at the meeting. What we need are the results of the survey that we can feed in to the committee and hopefully these will be ready in time.
Carrie has also been active in meeting with the President of the Royal Society of Medicine and Chairman of the National Institute for Health and Clinical Excellence, Sir Michael Rawlins who has been most helpful in identifying a way forward. Carrie is our representative on Patients in Nice (PIN). I hope to work with Carrie in raising awareness in Nice of our plight in the near future.
Another major event that took place this year was the Symposium on B12 that took place at the Medical School of the University of Lorraine at Nancy, France in September of this year. After negotiations with the Director of the Symposium the usual exhibitors fee was waived and we were able to mount an exhibition at the conference where medical professionals from around the world who had an interest in B12gathered to discuss the latest developments. There were two surprising
outcomes of the society attending the conference. Firstly, I was truly amazed that there was no consensus on what constituted low B12 levels, what was the best method of treating any deficiency, how long should treatment be carried on for, the role of Folic Acid or the usefulness of Methylmalonic Acid or Homocysteine in diagnosing B12 Deficiency. I went to the conference hoping that some reliable answers would be produced to some difficult questions – none were formed. The second surprise was the warmth with which the society was received. Doctors from all over the world were at one time lining up to speak with me and Sarah. One doctor who was responsible for producing a piece of research earlier in the summer which had sent shockwaves through the B12 community congratulated me on my good work and made me promise not to give up. They were genuinely interested in what we had to say and many are now in regular contact with us as a society.
We know from the results of the survey that there are serious problems with the way in which B12 Deficiency in general and Pernicious Anaemia in particular is diagnosed. Roughly 20% waited over two years for a diagnosis with another 18% waiting over five years to be told what was wrong with them. Three research papers that were recently published provided the scientific evidence that there are serious problems with the way in which we are being diagnosed. One suggested that the current threshold for determining B12 Deficiency is too low and needs to be higher which would mean that many more people will be diagnosed as having the deficiency. Another, published in May identified that the current test was exaggerating the amount of B12 in some patients’ blood, while another paper went even further in criticising the current test believing it is missing between 22% and 35% of people who are deficient and who have Pernicious Anaemia. And these figures are reassuringly similar to the initial findings of our survey. At last there is concrete scientific evidence that supports what we already know from our survey, online forum, facebook pages and telephone calls taken by the office. Again, we need our survey to be published to further provide evidence.
Whilst doctors and other scientists are becoming aware of the problems with diagnosing and treating Pernicious Anaemia it is only this society that is aware of the way in which this is affecting the everyday lives of members of the society. This year I have attended two appeals where members have been detained under Section 3 of the Mental Health Act – in both cases the members had had their B12 injections stopped (low B12 causes Psychosis). I have given evidence to support a member who had committed a crime while suffering from delirium before he was diagnosed with severely low B12, I’ve been involved in providing evidence in a case where there was the threat that a member’s children were going to be taken into care and had to write to a the head of a NHS Trust where three very elderly ladies in a Care Home all had their B12 injection stopped on the same day as “they no longer needed them”. I have supported a lady whose husband is in hospital and has had his B12 stopped (and even had his sub-lingual tablets confiscated) and who was told that excessive B12 damages the kidneys and promotes tumours. I have taken over seven hundred telephone calls relating to members not being diagnosed, not being treated, treatment being stopped and a whole raft of problems that I do my best to solve and help. I have to admit that some of the stories are quite draining and quite honestly nothing surprises me anymore. If the stories involve pregnancy or infants I am grateful that Jane the nurse is able to deal with these problems.
I am still a member of several committees and panels. Probably the most influential is the National Institute of Health’s panel that considers research proposals – the Diagnostic Technologies and Screening Panel where at the last meeting in November I was able to suggest that the current test for B12 and Pernicious Anaemia needed to be evaluated. I was only able to do this because I could provide the panel with the three papers relating to the test as described above. It was my last panel meeting as I have completed three years as a member but I am hopeful that the request will be taken seriously. Another panel recently wrote to me asking for my views on a research proposal that would look at how effective would it be to treat Pernicious Anaemia with 1mg Sub Lingual Lozenges given between one month and three months? I pointed out that many of our members use sub-lingual tablets in various strengths between 5-20mg often several times a day but only as a supplement to their three monthly injections.
I have been liaising with Clinical Researchers throughout the year to develop research programmes. One proposal that was submitted in mid-January and was for Patient Benefit was unfortunately turned down (to the dismay of the Research Lead) as it was ‘not of interest to the general public’. It was the closest we had come to getting a professional to get to the bottom of why some of us need more frequent injections than others. However, I am still in talks with the research lead and have recently submitted another bid for a grant to fund this research. In the meantime a skeleton research programme is underway which should provide some evidence that more research is needed. Another programme involves a member of the society who is also a researcher although this is on hold as she has just had a baby. We have already signed a Disclosure Agreement with the University and so I cannot give any further details about this. Whilst we can encourage professionals to research various aspects of diagnosis and treatment, I am aware that the society is first and foremost a patient support group – and our contribution to the debate must surely be the results of our survey which demonstrates just how badly some of us have and are being treated. The publication of the survey will be our contribution to the debate.
In June of this year my book was published. My sole intention in publishing the book was to raise awareness among the general public and medical professionals that there are serious problems with the diagnosis and treatment of Pernicious Anaemia. It was never going to make me a fortune but sales have been steady and I’m pleased to report that it has been well received by both members and medical professionals. My thanks to all those who have left such positive reviews on Amazon and for the many letters of thanks that I have received. The publicity following the publication that included BBC Radio, several newspapers and magazines helped raise awareness of our existence and led to a marked increase in membership.
My book was published in June
The Society is now an Incorporated Body which means that it has its own legal personality. We became incorporated on November 1stof this year.
It has been another incredible year where we have become aware of more issues surrounding our diagnosis and treatment. As to the future – well, hopefully we will be consulted regarding the new guidelines being drawn up by the British Committee for Standards in Haematology in the spring. Hopefully the Scottish Parliament will keep up its lobbying for someone to investigate the problems with the diagnosis and treatment and maybe the Diagnostic Panel will promote research into the problems faced by our members. And we can look forward to the results of our survey being published.
During the next year the society’s Strategic Plan calls for the society to employ a Volunteer Co-ordinator who will take charge of the day to day running of the society and already bids for grants have been submitted to allow this to happen. The Volunteer Co-ordinator is needed as the daily demands needed to keep the society running are too much for me. Employing somebody to deal with the everyday tasks will free up my time so that I can concentrate on getting our voice heard at a strategic level.
Grant applications have also been made for a new website with five year maintenance provision. Fingers are crossed that these materialise as I am now unable to deal with the demands of running a society that has such a large membership alone. I have started work on another book – Living With Pernicious Anaemia – which will be about how to cope with the myriad of problems patients encounter including social, family and work issues.
We are working on finding a suitable venue in London for our Spring Conference in March 2013 – we will let you know when and if we find somewhere suitable.
I like to think, as I do every year at this time, that next year I will be writing to you to tell you that there finally a team of medical experts are going to conduct a thorough review into how Pernicious Anaemia is Diagnosed and Treated and the society is playing an active role in this. Now wouldn’t that be a nice Christmas present to us all?
I would like to thank all the volunteers who help run the society. Without them the charity simply couldn’t exist.
And Finally – If you are able to travel to South Wales on the 22nd December you are welcome to our annual Christmas Coffee Morning which is being held from 10am until 12:30 pm at the society’s offices in Bridgend. Please let the society’s office know if you intend to come along as we want to ensure that there enough Mince Pies to go around.
I take this opportunity to wish you all a Merry Christmas and a Happy New Year.
 Do we need to reconsider the desirable blood level of vitamin B12? Smith and Refsum; Journal of Internal Medicine, j.1365-2796.2011
 Spurious Elevations of Vitamin B12 with Pernicious Anemia: Yang and Cooke, N Engl J Med 366;18; May 3, 2012
 Failures of Cobalamin Assays in Pernicious Anemia: Carmel and Agrawal, N Engl J Med 367;4, July 26th 2012