After over twenty years teaching in Further and Higher Education I was forced to abandon my career due to me having developed Pernicious Anaemia – a form of anaemia that was, before the 1920s fatal.
I started a small online society with the simple, and on reflection, naive intention of providing newly diagnosed patients with a plain English explanation of their disease. Eight years later, and with nearly 10,000 members, the Pernicious Anaemia Society has uncovered serious problems with patients receiving an accurate and timely diagnosis and in receiving adequate treatment (replacement vitamin B12).
My first two books have been very well received. The first- Pernicious Anaemia: the forgotten disease was published in the early summer of 2012 and three weeks later the first of a series of research papers was published in the New England Journal of Medicine that demonstrated how inaccurate the current test to assess the vitamin B12 status in patients was/is. That led me to immediately set about writing the second of my books – Living with Pernicious Anaemia which is a collection of case studies that shows the impact the disease has on patients’ everyday lives. The first book has now been reprinted twice and contains the papers about the inaccuracy of the tests.
‘The Forgotten Disease’ was published in 2012 and since then there has been several important developments since then which has led to this new book – ‘What You Need To Know About Pernicious Anaemia and Vitamin B12 Deficiency. The two most notable development was the publication in April 2014 of the results of a survey of members of the Pernicious Anaemia Society that was published in the British Journal of Nursing. That paper has been referenced many times and has been downloaded by over fifty researchers and so it’s ‘doing its job’ of making clinicians and researchers aware of the serious problems with patients getting diagnosed quickly and accurately and being treated adequately.
The second development relates to a series of maps published by RightCare – part of the NHS and the Dept. of Health. The ‘Atlas of Variation in Diagnostic Tests’ show regional disparities in the number of diagnostic tests carried out in the UK – and so the chances of a patient having their B12 assessed will to a certain extent depend on where he or she lives within the UK. But there again – the test is next to useless as I explain in the book. And then there’s the problem with getting adequate treatment to rectify the patient’s B12 Deficiency which not only depends on where in the world you live but on the attitude of the patient’s doctor and whether the patient is forced to by-pass normal healthcare channels and treat themselves. It’s all in this new book.