2019 PAS Conference

Treating Pernicious Anaemia
Getting it Right

Wednesday December 4th, Cardiff
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About the conference

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 conference will highlight the Good, Poor and Unacceptable Treatment encountered by patients with Pernicious Anaemia.
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.

The Speakers

Prof John Hunter
Prof John Hunter

Emeritus Professor of Gastroenterology, Addenbrooke’s Hospital, Cambridge

Our microbiome and its link with treatment for Pernicious Anaemia

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Professor John Hunter is a recognised authority on diseases of the gut including Crohn’s Disease, Colitis and Irritable Bowel Syndrome. He has contributed over a hundred research papers to major medical journals including The Lancet, Nature and the British Medical Journal and is the author of Irritable Bowel Solutions, Inflammatory Bowel Disease and Solve Your Food Intolerance.

Professor Hunter has been a consultant to a number of international companies including Shell, Unilever, Nutricia and Marlow Foods and has been elected a Fellow of the American Gastroenterological Association and the American College of Gastroenterology.

Prof Martin Warren
Prof Martin Warren

Professor of Biochemistry, University of Kent, Fellow Royal Society Industry

Our microbiome and its link with treatment for Pernicious Anaemia

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Professor Martin Warren is a research scientist with a strong background interest in a group of molecules called the pigments of life. These molecules include haem, which give blood its red colour, chlorophyll, which gives grass its colour, and vitamin B12, the antipernicious anaemia factor. Of all these molecules vitamin B12 is the most fascinating. Interestingly, vitamin B12 is only made by certain bacteria and a significant part of the Warren research laboratory is dedicated to understanding how the molecule is made and how it works it way into the foodchain and how the vitamin can be made more bioavailable.
Tegwen Elliott
Tegwen Elliott

PhD Student, Cambridge University

In Vitro Gastric Inflammation, B12 and Treatment
Sister Rachel Barnes
Sister Rachel Barnes

Advanced Nursing Practitioner

Injectable Cobalamin Evaluation – The ICE Project
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Started her nurse training in 2000, last of the project 2000. She then started in theatres and did her degree in practice nursing, developing her skills and interest in vitamin B12 when she started working with Dr Mccaddon in 2010.
Currently she is doing her masters in advanced clinical practice in which her dissertation is going to be based on the possibility of making vitamin B12 sub cutaneous in order to be self administered by patients.
Dr Nicola Ward
Dr Nicola Ward

Senior Lecturer, Clinical Pharmacy and Pharmacy Practice, De Montfort University

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

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Dr Nicola Ward is a senior lecturer in clinical pharmacy and pharmacy practice at De Montfort University, Leicester. She worked as a hospital pharmacist in the East Midlands before moving into academia 7 years ago. One of her key areas of research and teaching is regarding patient experience and and how healthcare professionals can collaborate with their patients to improve outcomes, and she tries to involve patients in her teaching wherever possible. After being diagnosed with Pernicious Anaemia herself 4 years ago, she is keen to work to raise awareness of PA and vitamin B12 deficiency amongst pharmacists and is leading on some work with the PASOC to investigate the evidence base for the current UK recommended treatment schedule.
Dr Heidi Seage
Dr Heidi Seage

Senior Lecturer, School of Health Sciences, Cardiff Metropolitan University

The Stigma of Living with an Invisible Condition

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Dr Heidi Seage is a Psychology lecturer in the School of Health Sciences at Cardiff Metropolitan University. She was awarded her PhD from Swansea University in 2012. Dr Seage completed her MSc in Health Psychology at the University of Glamorgan in 2008. She is a fellow of the Higher Education Academy. She is a member of the Psychology and Heath research Interest group. Dr Seage’s current research has been exploring the psychological impact of Pernicious Anemia, with a particular focus on stigma and wellbeing.
Dr Lenira Semedo
Dr Lenira Semedo

Chartered Psychologist, Researcher, Cardiff University

PAS members’ Experiences of Self-Managing Pernicious Anaemia

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Dr Lenira Semedo is a psychologist and researcher at the Faculty of Life Sciences and Education in the University of South Wales. She has a background in Health Psychology and her research is focused on investigating illness severity in individuals suffering with Pernicious Anaemia. Dr Semedo teaches undergraduate students in the School of Psychology always aiming to enhance the student experience and reflecting on practice and teaching development. She has also contributed to various research projects within the school. Dr Semedo also works with older adults with learning disabilities, providing physical and emotional support and helping to promote well-being and independence among service users. She enjoys travelling, reading and writing children stories.
Dr Hajo Auwerda
Dr Hajo Auwerda

Haematologist, B12 Kliniek, The Netherlands

Vitamin B12: Fact or Fiction?

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Dr Hajo Auwerda is a haematologist with a special interest in vitamin B12. He is known in the Netherlands as the B12 expert. He has written dozens of scientific publications in leading medical journals and is a sought-after speaker at international medical conferences. From this position he has built up an (inter) national network of doctors, clinical chemists and nutritionists who all have many years of experience in conducting research into the consequences of B12 deficiency. He now uses these contacts and partnerships at B12 Clinic where, in addition to patient care, clinically relevant research is being conducted to attain a clear medical consensus and adequate tests to speed up diagnosis and therefore treatment. From all over the country and abroad, GPs and specialists refer their patients to him.
Sophie Barry
Sophie Barry

PA patient

My Story

The Presentations

Watch the Conference presentations here

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