I suppose the most significant development relates to the size of the Pernicious Anaemia Society. We continue to grow by 2.4 members per day though I’ve just checked and yesterday we had four new members. As the membership grows so too does the demand on our services. And whilst the website contains all the information that newly diagnosed patients would need to know to understand their condition, the society is different from other support groups in that we are in a unique position to represent individual members who are encountering difficulties and turn to the society to help. One such instance happened exactly a year ago today – New Year’s Eve 2014. One of our members from the South West of England had received a letter from her GP surgery telling her, along with all other patients who had been diagnosed with Pernicious Anaemia, that she no longer had to endure the inconvenience of attending the surgery for her three-monthly injection. The letter was rather gushing and stated that there was to be no more ‘searching for a parking place’, no more ‘having to make the journey to the surgery’ and ‘no more painful injections’. The reason for this was that the GP writing the letter stated that a ‘new treatment’ was now available. Not from the surgery but ‘via Amazon in the form of 1mg or 2mg tablets’. Now this was worrying, but not as worrying as the statement that ‘this new method of treatment is fully endorsed by the Pernicious Anaemia Society’. The member had telephoned the office as she was quite concerned with this recent development. I asked her to send me a copy of the letter and when I received it I immediately telephoned the health centre and spoke to the Practice Manager. He assured me that the doctor concerned would telephone me to discuss this which he did on New Year’s Eve last year. He apologised for using the name of the society and told me that he ‘must have misunderstood’ information gained at a recent training event. He would, he assured me, write to all his patients with Pernicious Anaemia again and invite them in to ‘discuss their treatment’.
Now just imagine if the society didn’t exist? What would have happened to those patients told to buy 1mg tablets from Amazon. There is just one thin study that has shown that 1% of the tablet swallowed by a patient with Pernicious Anaemia will be absorbed ‘passively’. The study was, I have discovered, initiated by the NHS probably with a view to following the lead of Canada and Sweden in making oral tablets the main way to treat PA. But the evidence is, as I have said thin and based on a small cohort of patients. My view is that the patient with PA would swallow his or her tablet and then keep their fingers firmly crossed in the hope that some of the B12 would be absorbed. If it didn’t then the patient’s health would deteriorate sharply. And this sceptical view of the use of oral supplementation to treat PA is one supported by the British Committee for Standards in Haematology (BCSH) who state quite categorically that ‘parental administration remains the preferred treatment’ for Pernicious Anaemia. I was able to telephone the surgery and rectify this problem because I represent an established and credible patient support group that is a registered charity – something that no other support group is able to boast.
February saw us hosting a Parliamentary Reception in the House of Commons. Thanks go again to Madeline Moon MP and her team for securing the use of the Jubilee Room for two hours. Over 40 MPs attended and at the end six MPs from differing parties approached me to tell me that they would form a cross-party group to get our concerns discussed. Unfortunately the General Election led to the disbanding of the group but I am hopeful that we can host another similar event and get this restarted.
March saw the first round of presentations given by me to groups of Podiatrists. These regional groups are formed of an important player in primary healthcare as they are often the first people to identify patients with diabetes (they actively look out for diabetic foot) and they are always a receptive audience. I have given thirteen talks this year to groups as far north as Northumberland and as far south as Southampton. I completed my last presentation in Nottingham in November but have already been invited to three more next year as well as writing a 2,500 word article for the national podiatry magazine – deadline Feb 1st. Of the groups I have spoken to have none have associated any peripheral neuropathy with low B12 status. And they are as surprised as anyone else that the test to determine the B12 status of patients is so flawed as is the test to find out whether any deficiency is caused by Pernicious Anaemia. And that leads me neatly on to something else that I have become aware of this year – that I don’t have Pernicious Anaemia.
I did, at one time, suffer from a form of anaemia that would prove fatal if I hadn’t been diagnosed and treated. But once I started receiving replacement therapy B12 my anaemia was corrected (though perhaps not cured) and I am living proof that I no longer have a pernicious disease. I regularly receive telephone calls from patients whose injections have been stopped because their doctor had, quite rightly, observed that their blood picture was now back to normal. In an ideal world all doctors would realise that it is only the injections of B12 that is keeping their patient alive but, alas, this isn’t always the case. Time then for a new description of the disease, and, this year, I stumbled across one. You see, whilst my anaemia has been corrected and, to a certain extent cured (as long as I continue to regularly receive replacement B12) I still have, and always will have Autoimmune Metaplastic Atrophic Gastritis or, in the time honoured tradition of medicine using initials to describe diseases, I have AMAG. Telling people that you have Autoimmune Metaplastic Atrophic Gastritis results in two things. One, you’ll get a lot more sympathy than telling people you have Pernicious Anaemia which often results in the listener telling you that his or her grandmother “had that”. And secondly, it affords the disease something of a grander title that is fitting of a disease that, after all, had five Nobel Prizes for Medicine awarded to researchers into the disease. So there you are – tell people you have Autoimmune Metaplastic Atrophic Gastritis. I suggest you practice saying this until it runs easily off your tongue. And if your doctor tells you that you no longer have Pernicious Anaemia simply agree with him or her and then ask if he can do something about your AMAG.
Another development this year has been the setting up of four regional support groups and I have attended the launch of each of them. These groups are invaluable in helping members understand and cope with their condition. It is often the case that only when patients talk to other patients do they get some understanding of what they are going through. The society cannot organise these events as we simply don’t have the resources, but we can contact all members in the vicinity and provide them with the contact details of the person organising the group. We can also contact our wide range of medical professionals and ask them to make a presentation to the group and where this has happened it has been very successful. The newest group will be meeting in the new year in Gloucestershire and I took a telephone call yesterday from a member in Oxford who is interested in setting up a local group there.
Another development that happened in 2015 was the development of a downloadable app that can be used by primary care physicians to gain a full one unit credit for their Continuous Professional Development (CPD). The app features ten questions about the new guidelines on B12 and Folate that were issued by the BCSH following a meeting between the society and the Dept of Health. The app was developed by Prof Jo Martin and her team at the DofH and the society. We are currently working on a further ten questions. Developing the app was necessary because although the new guidelines ignore the issue of treating the patient according to his or her individual needs, (more on this later) they do point out that the test for serum B12 has serious shortcomings as does the test for Intrinsic Factor Antibody (IFA) and that their diagnosis shouldn’t rest solely on the tests. However, doctors are continually being bombarded by guidelines and so by developing a test that provides them with a unit for their CPD would mean that there is an incentive for physicians to become familiar with the guidelines. You see, rather than just moaning that doctors are not reading the new guidelines we did something about it. Around ten GPs have telephoned the office about the new guidelines as we are mentioned in the ECPD website and the fact that doctors are interested enough to telephone the society is a good thing in itself. It is only by actively engaging with health workers and health decision makers as a patient support group can we ever hope to change things. As far as I’m aware we are the only patient support group for patients with Pernicious Anaemia is carrying out any engaging to raise awareness of the problems faced by our members.
In the summer I attended the B12 Conference at the University of Nancy. It was incredible to see so much interest being shown by leading academics from all over the world not only about B12 but also about the work of the society. Many new contacts were made and again we have been asked a number of questions and asked for our opinion following on from the conference. I have written a short summary of the main points of the meeting elsewhere on my blog.
Telephone calls to the society have steadily increased this year – we now take around ten per day. It is seldom a day goes by without us having to deal with someone who has had their injections stopped altogether by their GP. And as you can imagine some of these calls are from some very angry and confused members. The most common complaint or enquiry centres around treatment based on the callers needs or the needs of one of their family or friends. Other causes of enquiries centre around the patient displaying all of the symptoms of Pernicious Anaemia (sorry AMAG) but whose serum B12 is just above the threshold used to identify a deficiency. These calls are often long and complicated and it is only me who deals with them. And this is becoming increasingly difficult.
It has become obvious that the time for the society to be run by professionals has arrived. There is simply too much for me to do and relying on volunteers to help is no longer feasible. And so it was that at a meeting of the Trustees in London in the summer it was decided to take matters into hand and start applying for grants from various trusts and other grant-making bodies so that we can employ three part-time people to help meet the increasing demands made of the society. I need to concentrate on pushing the problems with the diagnosis and treatment of Pernicious Anaemia onto the political and healthcare agendas. Whilst I have had some success in doing this I am caught up in too many administrative matters and daily telephone enquiries to concentrate on this area. That’s why we launched the appeal for regular small donations, not to use the money to employ people but to finance professional fundraisers to help secure funds – big funds. Writing bids for grants is a complicated, time-consuming and specialised affair and there are professional bid-writers out there who will ensure that our appeals stand a chance against all of the other charities chasing the same funds, some who employ their own specialised bid-writers. The society has become a victim of its own success and hopefully in the not too distant future the issues with the diagnosis and treatment of Pernicious Anaemia in particular and B12 Deficiency in general are dealt with and resolved and the society can go back to its original remit which was to provide newly diagnosed patients and their families and friends with a plain-English explanation of their condition. I’d like to say a great big thank-you to all those who responded to our appeal for £1 a month. We still have some way to go but we will get there.
Last year I was invited to lunch with a senior figure in the healthcare system in the USA. This professor had travelled to a conference in Oxford and then made the journey to meet me in south Wales. Again, it was because the PA Society is a recognised and credible charity that the meeting took place. And that’s how we will change things. As one senior figure in the UK Healthcare system told me “if you run around waving your arms about shouting ‘this is unfair’ nobody will listen to you”. So what do I do? I present evidence according to established protocol and procedures. And that is often frustrating, but it is the only way to get our message across. And you know what? That evidence of there being serious problems with the way in which PA in particular and B12 Deficiency in general is being diagnosed and treated is growing all the time. And one of the ways in which we collect and collate evidence is by putting clinicians, academic scientists and patients in touch with one another. And that’s what happened at the beginning of December with our annual Round Table lunch for professionals associated with the society. We now have four research partners all looking at different aspects of the diagnosis and treatment of PA. One of those research programmes was granted approval by the East of England Medical Ethics Committee in June following over a year of consideration and amendments. This programme, led by Prof John Hunter is the much needed investigation into why some patients need more frequent replacement therapy injections than others. And those who registered with the programme and who have been selected by Prof Hunter to take part will be contacted in January. Following the Round Table meeting three Master of Science research programmes will be taking place and we should also get hold of some radioactive B12 which one researcher is desperate to source.
It’s amazing what networking accomplishes. I met with an Oxford University Professor of Genomics and Biochemistry just before Christmas. I had been sent a very complicated research paper by the Professor and is colleagues that I couldn’t understand at all but I had been told it would be of interest to me. I explained to him that some of our members are still symptomatic even after treatment had begun and that some needed enormous amounts of B12 to feel any benefit. “Oh I can tell you why that is” he said in a really matter of fact way. He then showed me a few slides from presentations he had made. His colleague nodded in agreement. I then started to tell him of the people who would be at the round table event. He was unable to attend due to a prior engagement but he did say “I wish I could be there – you know all the right people don’t you? And there are some people there I would love to meet…..”
My blog continues to be popular though I have reneged on my promise to update it daily – I simply don’t have time some days. I’ve just received an email from WordPress that hosts it, and in the last 12 months over 12,000 people have viewed it. 268 viewed it on one day – August 19th. Most visitors were from the UK with significant numbers from Australia and the USA though there were also visitors from a further 66 countries. Most people found it via the PA Society website with the second biggest referrer being Facebook followed by Twitter, Pinterest and HealthUnlocked. See here:
Now, it’s time to turn to the elephant in the room. My third, and mot people say my best book about Pernicious Anaemia was published in November. It’s all in there, AMAG, the New Guidelines, the society’s Survey of members (published 2014), case studies galore. So, if you are looking for a New Years Gift for someone special, or for yourself, you could do worse than buying a copy. It could change someone’s life and yes, it is available on Amazon where one reviewer has written:
“Best Book on the Subject Ever”
“Thank you Martyn Hooper for this marvellous book! It will further the understanding of this misunderstood condition. Definitely the best book on the subject. Also a “must read” for every G.P, neurologist,haematologist and gastroenterologist. It is so clearly written that lay-people can understand it. When the problems of Pernicious Anaemia and Vitamin B12 deficiency are fully realised by the medical profession, (and they surely will be, at some time in the not too distant future) you will be acknowledged as the pioneer that you are! My very best wishes to you . I hope that you read this!”
Finally, I wish all my readers, members of the Pernicious Anaemia Society and their families and friends and all associated with the Pernicious Anaemia Society a Happy New Year. I shall be celebrating in true PA patient style, with two glasses of whisky and an early night….Happy New Year.