The Steering Group
The project is managed by a Steering Group, led by an independent chair from the JLA. The Steering Group includes patient representatives as well as professionals. The role of the Steering Group is to manage the PSP, ensuring that it is delivered in a timely way and adheres to the JLA’s key principles of transparency, inclusion/exclusion, equality of voice and use of the existing evidence base. The Steering Group will ensure that the process from the initial survey to the identification of the top 10 priorities is documented, open and transparent and entirely determined by the responses received from patients, carers and professionals and the review of the existing evidence base.
- Martyn Hooper - PSP Lead
- Katherine Cowan - PSP Chair
- Karyl Carter - PSP Coordinator
- Petra Visser - PSP Information Specialist
- Dr John Pelham Warren - Steering Group Member
- Dr Asim Naqvi - Steering Group Member
- Dr Rakesh Koria - Steering Group Member
- Dr Nicola Ward - Steering Group Member
- Dr Heidi Seage - Steering Group Member
- Stephen Ganter - Steering Group Member
- Sophie Barry - Steering Group Member
- Jacqueline Gold - Steering Group Member
Martyn Hooper MBE
Founder and current Chairman of the Pernicious Anaemia Society.
Author of three books about Pernicious Anaemia and one on Dietary B12 Deficiency.
Katherine is Senior Adviser to the James Lind Alliance (JLA) and is chair of the Pernicious Anaemia Priority Setting Partnership (PSP) Steering Group. She has been a key contributor to the development of the JLA method since 2008 and has chaired and advised around 40 PSPs internationally.
I retired in 2018 following 18 years with the Ministry of Defence, attached to the Royal Navy, and 30 years working with Stroke Survivors at the Stroke Association. I was diagnosed with Pernicious Anaemia in 2009 and have been a supporter of the Pernicious Anaemia Society following my attendance at their first conference, I have been providing support to the PAS since January 2019.
Petra Visser is a webdesigner and -developer and the webmanager of the PAS. She was diagnosed in 2005 and is the founder/chair of the Dutch B12 Deficiency Foundation.
Dr John Pelham Warren
I am a retired consultant physician at Princess Alexandra Hospital Harlow. I retired in 2006, having specialised in respiratory and general medicine. I have had Pernicious Anaemia for 27 years.
Dr Asim Naqvi
After 20 years of clinical practice, I have become aware of the importance of vitamin B12 deficiency and the failings of current medical care in the management of this. The clinical presentations are widespread and often misdiagnosed leading to significant unnecessary morbidity.
I strongly feel a scientific approach is required to confirm what I have found in many clinical cases such that guidelines are updated in patients best interests.
Dr Rakesh Koria
Dr Koria is GP in East Kent with a variety of roles for last 30 years including GP Principal, Hospice Physician and now Acute Response Team GP. He is the Macmillan GP Associate Advisor and Kent & Medway CCG Cancer and Quality & Education Lead. He is NHS GP Appraiser.
Dr Nicola Ward
Senior Lecturer, Clinical Pharmacy and Pharmacy Practice. I have Pernicious Anaemia myself. This gives me a unique combined perspective as both patient and healthcare professional which I hope will be insightful for the purpose of this PSP.
Dr Heidi Seage
Dr Heidi Seage is a Senior Lecturer in Health Psychology. She is a Chartered Psychologist and full member of the BPS Division of Health Psychology.
Stephen Ganter is a retired Management Consultant and Programme Director, with a background in leading transformational change in complex organisations. He is the Vice Chair of the Pernicious Anaemia Society. He is a Pernicious Anaemia patient with an interest in improving the speed and accuracy of diagnosis, and improving the awareness and knowledge of the condition amongst sufferers and their families.
Sophie Barry is currently a first year Biomedical Science student at the University of Lincoln. She achieved her Gold Crest award for her report on patients experiences with Pernicious Anaemia, taking a qualitative approach. Furthermore she spoke at the Cardiff PA conference about her own story with PA, including her battle with a diagnosis.
Jacqui Gold is an Accountant, Teacher and an Entrepreneur. She was diagnosed with Pernicious Anaemia in 2018 and has experienced a difficulty in getting clarity of management between medical professionals.