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