Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

The Not-So-New Guidelines – An Update

by | Oct 24, 2016 | 8 comments

The Guidelines on Cobalamin and Folate that were produced by the British Committee for Standards in Haematology are now over two years old. The guidelines were an update of previous guidelines issued to medical professionals and they came about following on from a meeting I had with the Dept. of Health in 2012 – just before the London Olympics.

Incidentally, that meeting was arranged by the then Minister for Health, Paul Burstow MP, who had attended a public screening of our documentary ‘Living with the Fog’.

The consequent meeting at the Dept. of Health was scheduled to last 20 minutes but went on for nearly two hours and the outcome was that a committee was formed at the British Society of Haematology to examine the way in which cobalamin (B12) and folate disorders were diagnosed and treated – the outcome was the new guidelines.

Okay, okay, they fall short of expectations in that they say nothing about the contentious issue of treatment (or, more accurately, inadequate treatment) saying that was a matter for the British National Formulary (BNF), but they do address the problems with the next-to-useless serum B12 test and the notoriously inaccurate test for the Intrinsic Factor Antibody. And they address these problems by telling physicians that if the patient has the symptoms of a B12 Deficiency, yet the tests show nothing wrong, then the doctor should ignore the test results and begin treatment to prevent any neurological damage occurring. Now that is pretty good stuff – an acknowledgement that the current tests used to diagnose any deficiency and to determine if any deficiency was due to an absorption problem in the gut are not ‘fit for purpose’ – my term not theirs.

And that, you may think, was that. Now all our problems faced in getting diagnosed would be over. Think again. The next problem was getting physicians, and most notably General Practitioners, to not only be aware of the guidelines but to read them. And that’s when the Dept. of Health contacted the PA Society and asked for our help in developing a downloadable app that GP’s can download and take a test on the new guidelines. And in return for taking the test the doctor receives a full unit credit for their Continual Professional Development (CPD).

And that is the point of this little blog. Have a guess at how many people will have downloaded the app and taken the test. Go on – have a guess. 100? 500? 1,000?
The answer may surprise you. By last week and in less than a year (the app was launched on October 31st last year) a grand total of 3,338 medical professionals have downloaded the app and taken the test. The figure will most probably be even higher now. That’s an incredible achievement that uses modern technology to enable medical professionals to keep abreast of latest development such as the new guidelines, or perhaps the now not-so-new guidelines.

And here’s another little teaser for you. That one committee – the committee for standards in haematology, regularly issues guidelines on all things to do with haematology. Now, how many guidelines do you think they have issued since the cobalamin guidelines? 5? 10? 15?
Again, the answer may surprise you; there have been no fewer than 36 other guidelines since the ones that concerns us the most. That works out at over one a month. And here’s something else to ponder – the doctors (mainly haematologists) who write these guidelines (known as the Guideline Writing Group or GWG) don’t get paid – they do it out of a sense of duty and, I suppose, being asked to join a GWG is something of an honour.

And think of this – the British Committee for Standards in Haematology is just one such committee – there will be others for all of the other branches of medicine, paediatrics, psychiatry, orthopaedics… get the drift. No wonder when our members mention the new guidelines to their GP they are often told “Oh! More Guidelines!”. No wonder GP’s are under pressure.

Still; we’ve done our bit and the 3,338 downloads are testament that they are being read. Now if only we can get someone to take a good look at the way in which we are being treated we might see an improvement in patients’ everyday lives. Of course there will be developments in this area that will be announced at the conference on 10th December, which, by the way, is now a sell-out. All good stuff eh?

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  1. Avis Hannon

    Brilliant hard work, thank you Martyn. An angel in disguise. Thank you so much for you do.

  2. Shandell Cummins

    That’s great news! Times are changing. I guess with knowledge comes understanding of the patient and hopefully that will come in time too. Thank you for everything you do towards PA!

  3. Andy Lucas

    Good news, still a long way to go re-frequency of injections but good progress, well done.

  4. Amanda

    We all still have to keep plugging away, it’s a great start in terms of the condition being recognised sooner. To late for some of us who have to self treat to try and stay on top of the symptoms that plague us daily…healing takes a long time, and sometimes it’s a little to late to fully heal but we must try. Let’s hope our condition continues to gain interest and understanding umongust the professionals who we go to in desperation, and tests are understood and treatment started sooner rather then later. Keep on trucking. Onwards and upwards. X

  5. Lyn Mynott

    Well done Martyn! You deserve a medal for all your hard work and perseverance. x

  6. Pat

    Yes Martin, against all odds you are striving forward. Thank you isn’t sufficient but a thousand thank you’s.

  7. jane

    Is there any way we can find out the content of this app before suggesting it to our GPS? Providing NICE, BNF and BMJ Clinical Summary not worked so willing to try anything!

  8. sue childs

    Great news. I hope some of the Gloucestershire GPs read them . I still hear of patients being refused injections despite positive diagnosis. Adequate treatment is the goal now. We all SO appreciate your efforts Martyn and the staff and colleagues who support our cause. Thanks


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