Treating Pernicious Anaemia
Getting it Right

Wednesday December 4th, Cardiff

About the conference

Before the late 1920’s people who were unlucky enough to develop Pernicious Anaemia died, and it was a drawn-out death over several years. The breakthrough came when it was discovered that feeding patients raw or lightly cooked liver and other offal meant that the disease was no longer always fatal. I have not been able to discover how effective liver treatment was in treating patients, but it led to the development of liver extract injections in the late 1930’s and then to replacement B12 injections in the late 1950’s. Today, as long as the patient receives a diagnosis of Pernicious Anaemia, and is prescribed treatment, patients can expect to lead a more or less normal life – though for some the symptoms of tiredness, fatigue, brain fogs etc. never go away – we don’t know why.

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.

Conference Schedule

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8:30am

Registration, Tea & Coffee

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09:15 – 09:20

Welcome and Housekeeping

Karyl Carter

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09:20 – 09:30

My Story

By Sophie Barry, patient

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09:30 – 09:50

PAS members’ Experiences of Self-Managing Pernicious Anaemia

By Dr. Lenira Semedo, Chartered Psychologist, Researcher, Cardiff University

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09:50 – 10:20

Our microbiome and its link with treatment for Pernicious Anaemia

By Professor John Hunter, Emeritus Professor of Gastroenterology, Addenbrooke’s Hospital, Cambridge &
By Professor Martin Warren, Professor of Biochemistry, University of Kent; Royal Society Industry Fellow

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10:20 – 10:45

Injectable Cobalamin Evaluation – The ICE Project

By Rachel Barnes, ANP, Gadden Road Surgery, Rhosllanererchrugug

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10:45 – 11:05

Tea & Coffee

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11:05 – 11:30

The Management of Pernicious Anaemia- a step in the right direction?

By Dr Nicola Ward, Senior Lecturer in Clinical Pharmacy and Pharmacy Practice, De Montfort University

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11:30 – 12:00

Vitamin B12: Fact or Fiction?

By Dr Hajo Auwerda, Consultant Haematologist and Founder of B12kliniek.com

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12:00 – 13:00

Workshops

By Dr Willemina Rietsema, GP, Oxford &
Dr. Lesley Anderson, Senior Lecturer in Cancer Epidemiology, Centre for Public Health, Queen’s University Belfast &
Charlene McShane, Queen’s University Belfast

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13:00 – 14:00

Lunch and Networking

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14:00 – 14:30

In Vitro Gastric Inflammation, B12 and Treatment

By Tegwen Elliott, PhD Student

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14:30 – 15:00

The Stigma of Living with an Invisible Condition

By Dr Heidi Seage, Senior Lecturer, School of Health Sciences, Cardiff Metropolitan University

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15:00 – 15:30

Panel – answering Members questions

All

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15:30 - 15:45

CPD Certificates – Closing Remarks – Survey Monkey

Martyn Hooper MBE, Founder & Chairman of the PAS

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15:45

Tea/Coffee & Farewells