I am aware that you haven’t heard from me for a while. But please don’t think I haven’t been busy over the summer months because it really has been a busy period and actually finding the time to just sit down and update you has not been easy. Anyway, here’s a little update on what has taken place in the last few months.
The Committee on Toxicity of Chemicals in Food, Consumer Products and the Environment (COT) contacted me in the summer to ask my opinion on the accuracy of the B12 test. The committee secretariat had visited our website and were made aware that there seemed to be “issues” with the accuracy of the test. I prepared a report for the committee and was then asked to attend a meeting in London. The committee was acting as the secretariat for the UK Government who are considering raising the ‘upper tolerable level’ of folic acid fortification to flour. Adding folic acid to flour will help reduce the number of babies born with neural tube defects (such as spina bifida). However, it would mean that some of the indicators of B12 deficiency would be masked. The committee wanted to know if the present test to determine the B12 status of patients was accurate. I told the committee that the PA Society is not against fortifying flour with folic acid but we are concerned that the current B12 test is far from being an accurate assessor of patients B12 status and that the committee needed to be aware of that. The committee decided not to raise the upper tolerable level of folic acid fortification of flour until a more accurate test was developed.
GP Study Day
Following on from the above I have been asked to make a presentation on the problems faced by our members being diagnosed early and treated according to their needs at an ‘Education Day’ that is being organised for around 200 GPs from in and around Oxford. The idea is that I will be able to raise awareness of the problems faced by our members and then other speakers, mostly scientists, will explain the problems with the current tests used to diagnose PA and make GPs aware of the Guidelines from the British Committee for Standards in Haematology which suggests diagnosing on patients’ symptoms rather than relying on the various tests. They will also be told of the Active B12 Test and how to interpret results.
I have accepted the invitation and hopefully the Study Day will take place sooner rather than later and will be the first in a series of regional events that will take place over the next 12 months.
National Institution for Health and Care Excellence (NICE)
Our request for a Guideline to be developed on Pernicious Anaemia is continuing its progress through the various stages of the Guideline Development Process. It has now been referred to NHS England who are the ultimate decision makers as to whether there is a need for NICE to develop a guideline. I know that the new Director of Guidelines has asked NHS England to make their decision as quickly as possible which gives me hope. Hopefully a decision will be made by November 1st (see below).
So, here I was, standing on the platform of Bridgend railway station waiting for a train to London for a meeting. There was a thirty-minute delay and who should I bump into but the Member of Parliament for Bridgend, Madeleine Moon MP. Madeleine has been a great supporter of the society and has, in the past, organised an Adjournment Debate and applied for a two-hour pass to the Jubilee Room at the House of Commons. It was back in 2009 that we last held a Parliamentary Reception in the Jubilee Room where over 80 MPs attended to listen to a presentation that I gave. The presentation was well-received and there was even talk of a cross party group forming to campaign to get the way in which PA is diagnosed and treated thoroughly reviewed. Alas! A General Election was called soon after and the idea was dropped.
Madeleine suggested that she apply for another two-hour slot and I agreed. And guess what? We were successful and will be holding another Parliamentary Reception at 12 noon on Thursday November 1st.
I need your help. I want you all to write to your MP and ask him or her to attend one of the three presentations I shall be giving. The first will be as 12 noon, the second at 12.40 and the third at 1:20.
Don’t only write, however. Telephone your MP’s Constituency Office and Parliamentary Office to make sure he or she gets the message. You can find the sample letter and Invitation to the event here on the PAS website. Please ask your MP to confirm whether he or she will be attending and at what time and let us know by emailing to firstname.lastname@example.org. Hopefully we can raise more awareness of the problems we face with getting diagnosed and treated by those who make decisions on our behalf.