The most common complaint received by the Pernicious Anaemia Society relates to the treatment of the disease. It is time for the ‘one-size-fits-all’ treatment to be reappraised. This PAS conference will highlight the Good, Poor and Unacceptable Treatment encountered by patients with Pernicious Anaemia.
Unfortunately, very little work has been done on the treatment for Pernicious Anaemia since the early 1960’s. We do know that in the U.K. patients were prescribed a 1mg injection of B12 every month, and the British National Formulary (BNF) changed that to every two months in 1974 and then to every three months in 1984. We are unaware of any scientific basis for the changes. But we do know that, following the production of a report, and several meeting with the BNF, the treatment is now a 1mg injection ‘every 8-12 weeks’.
Over 70% of telephone calls taken by the PA Society relates to the treatment of the disease. We’ve heard it all over the years, from patients who have been told that they are of a certain age and no longer need the injections, patients being told that their B12 levels are too high and they are in danger of developing serious medical conditions and that no further injections will be prescribed until several months have passed (this happens when patients have their B12 levels checked after requesting more frequent injections). Patients have been told that they have Pernicious Anaemia and so they need to eat red meat, whilst other patients pay privately for injections to supplement their needs. Others use a variety of alternative delivery methods to supplement their prescribed treatment including nasal sprays, sub-lingual sprays and lozenges, skin patches and even anal suppositories. However, the efficacy of all of these alternative treatments have never been subject to a thorough evaluation. For some patients these alternative treatments mean they can carry on with their everyday lives whilst for others they make no difference at all.
This conference concentrates solely on the treatment of Pernicious Anaemia. You will hear presentations from professionals with an interest in this field, most of whom have carried out research for or with the Pernicious Anaemia Society. We want the conference to be a forum for the exchange of ideas and experiences – from professionals and patients and we have built-in to the day workshops that makes this possible.
This conference has been made possible by the kind and generous donations from a number of members of the society, we have received no external funding, and I would like to thank those individuals on behalf of all members of the Pernicious Anaemia Society, for their benevolence.
Tickets for the conference are now available through the link below. We have a limited number of tickets available so be sure to get yours now. You’ll also be able to find out more about the speakers and their presentation, and the schedule for the conference. We look forward to seeing you there!