I’m pleasantly surprised (and a little smug) that so many members of the PA Society refer to this blog to keep them up to date with what is happening with the society. I am guilty of not posting more regularly but the simple truth is that I am finding it difficult to keep up to date with all that is going on.
Earlier today I updated the society’s Management Council via Skype on what has been going on and here are the main points. This is as good a place as any for me to try to summarise all that has been going on with the society.
A meeting of the Trustees was held earlier this month. At the meeting I informed the assembled that the demands on my time in looking after the everyday issues of the society and trying to get our grievances pushed onto the political and health agendas was simply too much for me and it is now time that the society employed three part-time development officers. The following posts will be generated in the next six months:
National Development Officer (30 hours per week)
Welsh Regional Development Officer (20 hours per week)
English Regional Development Officer (25 hours per week)
Scottish Regional Development Officer (20 hours per week)
Northern Irish Development Officer (10 hours per week)
I am now in the process of writing a new Strategic Plan that incorporates the above and I will be meeting with a professional bid/grant writer on the 12th of this month with a view to applying for funding for the posts.
The survey of members’ experiences with getting diagnosed and treated that ran for just over a year has been written up into a research paper. Originally devised by Dr Porter, who is a member and sufferer, the survey was analysed by a biochemist who is also an accomplished health statistician. Over 1,200 members completed the survey but after ‘cleaning’ we had reliable data on over 800 members. I don’t want to reveal all of the findings here but 14% of members waited over ten years for a diagnosis, 19% over five years and 21% over two years. And in all that time they were feeling ill, making repeated visits to doctors’ surgeries and experiencing the worst effects of B12 Deficiency that impacts at home and in the workplace. These findings mirror what is regularly reported on the Pernicious Anaemia Society’s online forum and on other social media sites including the many Facebook pages. The subsequent clean data was analysed by Dr McCaddon and written up in a serious research format. This was then submitted in April to the British Medical Journal who promptly rejected it stating that the subject was simply ‘too big’ and that it needed to be published in a post graduate journal. After consulting with senior academic clinicians it was decided that the paper be submitted to the British Journal of General Practice who similarly rejected the paper though this time it had gone out to consultation. The reason given for the rejection was that in general the paper was ‘too patient centred’. The paper is now being re-written with a view to submitting it to the European Journal of General Practice in the near future.
To say I am disappointed would be an understatement yet Dr McCaddon and his team take the rejections as par for the course and assure me that rejections are the norm and that eventually the paper will get published in a respected journal. It is so important for the future of the society that this paper is published so that it can be criticised and ‘ripped apart’ by interested parties before being seen for what it is – a picture of what members of the society are experiencing. Of course it is patient centred! Until we can get that research published then we will struggle to get our voice heard. What I am aware of is the need to maintain a professional attitude and ‘play the game’. It has been suggested that I go to the press and present our findings in a sensationalist way. That would, I’m afraid, be counter-productive and would succeed only in alienating ourselves from decision makers in the Health
The research into why some patients need more frequent replacement therapy injections than others is taking form slowly. For the preliminary research to prove that there is indeed a problem with some patients suffering because of strictly enforced treatment protocols that do not take the individual’s needs into consideration we need twelve patients who receive three monthly injections (in the UK) and another thirteen who are on monthly treatment. The preliminary research will, the researcher believes, give access to a full scale study that will involve many hundreds of thousands of pounds. The problem is that the preliminary research will cost £7,500 – perhaps a little less if the results prove conclusive early on. I am not in a position to give any further information on this as we have signed a non-disclosure agreement, but the researcher is a world renowned clinician with a great many years experience in this area. I’m glad to say that one of our volunteers, Anna, is taking charge of this and we now need to source the funding to allow the preliminary research to take place. If you are currently receiving MONTHLY injections of B12 that are prescribed by your doctor in the UK please consider registering for the research programme by clicking the link below.
Another research programme is in association with a university in the south of England and is being led by a member who is also the Senior Research Fellow at the university. This research centres on the complex biochemistry that takes place between B12 and Human Cells at cell level. Funding streams are currently being identified and evaluated.
A third research programme involves a GP who is about to undertake her MD in the effects of B12 supplementation and Dementia. Again the society and the researcher are currently identifying and evaluating suitable funding streams.
I have now completed the first draft of my second book – Living With Pernicious Anaemia and I would like to thank all those who agreed for their often harrowing case studies to be published. The book is due for release on October 19th – the day of the annual conference. I am now working on the second edition of Pernicious Anaemia: the forgotten disease which is due to be published in the Spring of next year. You can be assured that I will let you know when Living With Pernicious Anaemia is released!
Sally-Ann Carr and Megan have done a tremendous job of organising this year’s conference that takes place on Saturday October 19th. It will take place at the society’s large office suite on Level 4, Brackla House, Brackla Street, BRIDGEND CF31 1BZ. Registration starts at 9am and the day concludes at 3pm. The night before a Round Table Dinner is being held in a local Country Park Hotel where all of the research partners and other doctors and scientists who are friends of the society will discuss the latest developments in diagnosing and treating Pernicious Anaemia. Many of these clinicians and scientists will be spending the night at the hotel and attending the conference the next day. Please tell us if you will be attending by registering a place using the form on the website – we need to know how many are coming to ensure everyone has something to eat.
This starts on Monday 21st October and ends on Friday 25th. Awareness Day is Wednesday 23rd October. We will be providing the following to our members:
1. Downloadable Letter Template for members to send to their MP – this will be provided a few weeks before the Awareness Week.
I have already began contacting media outlets. The problem is that until we get the research published we are only really regarded as amateurs who aren’t credible. Everything hinges around getting the research published.
We have now had our database thoroughly cleaned and duplicates and multiple ‘personalities’ have been deleted. In three years 4,000 members have joined. Membership averages 2.4 per day though this falls off during the early part of the month and peaks close to or around pay day (we had 6 new members yesterday, 4 on Friday and 3 on Thursday. It will be interesting to see just how many members who have joined since last November renew their membership. At the Trustees’ meeting the question of offering a ‘Life Membership’ or ‘Vice President’ to members who would pay a premier fee for the privilege. The suggestion, made by myself, met with only a Luke-warm reception.
The latest newsletter will be available at the end of this week.
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