I’m 67 and for the last 18-20 years I have worked alongside Dr Chandy, his daughter Leanne, Hugo Minney and Ann Peel to set up the group and then to have it registered as a charity, all the while maintaining the ethos that Dr Chandy was such a good example of – to be upright, peaceful, transparently honest, and humble.

Daughter of a miner and wife of a miner, I am determined to continue to do what is right, no matter the difficulties. I have B12 deficiency myself and suffered with symptoms for many years. I also developed epilepsy. If it were not for Dr Chandy I would have suffered much worse.  I might be tired and lack energy, but my heart is still big.

I first heard about B12 deficiency when I joined Dr Chandy’s practice as part-time assistant practice manager in the noughties. Dr Chandy was already facing challenges from the bureaucracy, and I took over the work of preparing reports for what was then the PCT and for the hospitals, and managing the communication and channels of communication to de-escalate what was becoming dangerously heated.

I accompanied Dr Chandy to GMC (General Medical Council) hearings where they ruled that there was no case to answer, and assembled the evidence to show that the B12 deficiency diagnoses were real and the symptoms were indeed regressing, which resulted in two academic posters at an international conference, and evidence presented to BMJ (British Medical Journal) and BNF (British National Formulary), shortly after which evidence their guidance was changed in the direction we presented evidence.

When Dr Chandy retired he had a little more time, so we wrote up his lifetime of experience into a medical textbook, “Vitamin B12 deficiency in clinical practice”, which is available for download. As chief executive, I keep the charity operating.

Have worked in several types of work during my long life. Enjoyed them all. Had lots of hobbies and interests too! I am, for the last 18 years a Jehovah’s Witness and glad to have found my happy place in life. I first met Dr. Chandy when he arrived in the Horden area as a GP. My father and he became good friends, surprising as my father was very much against what he called outsiders! I do however remember him commenting that Doctor was different, clever, gentle, thoughtful and completely determined to make life easier for people in Horden area. That certainly happened and dad kept repeating “I told you so” every time Joseph proved true to his word.

I was so happy when asked to chair the patients group. This brought me closer to our Villages hero . Everyone who attended his surgery had only good things to say about the service there! The birth of my second daughter interrupted my Patient group time but once they were both in school and I was told I was needed, this time as secretary, I returned to my surgery group. I feel honoured to have known Dr Chandy so long and being involved in his wonderful work, even though it was in a non medical position. The surgery has changed so much since we lost him, but the most important thing I learned from that wonderful man was to always be totally honest and always work for the good of others.

With over 30 years of experience as a clinician and consultant, Annie Barr is the Chief Executive Officer of AB Health Group, a leading provider of healthcare training and consultancy services in the UK and internationally. She holds a Master’s degree in Advanced Clinical Practice from Northumbria University and a postgraduate certificate in Business and Executive Coaching.

Hi All I’m passionate about this subject as I was diagnosed in my late 20’s with Pernicious Anaemia after 5 years of differing health issues, as well as simply feeling tired, everything felt hard work, like wading through treacle.  Seeing different consultants and drs, who came to no conclusion and suggesting I take anti depressants at the end of all tests!

After developing bowel issues they luckily tested my b12  (98!!!) and within the next few months I was finally diagnosed and given b12 therapy. I then found Sally Pachloks book, ‘Could it be B12 and epidemic of misdiagnosis’ and Dr Chandy, and after that Martyn Hooper, then Chairman of PAS.  I volunteered and tried to help where I could with, pushing this subject into the powers that be radar and networking with Professors,  Consultants, and trying to help support sufferers. Which I still try to do to this day.

I’m very passionate about  spreading the correct info and helping people help themselves to get well. It’s very rewarding and everyone I have met along the way have been so lovely, especially the late Dr Chandy and I’m keen to give a little bit back where and how I can.

So onwards and upwards, the other Trustees here are so dedicated and knowledgeable and do incredible things already, so pleased to be part of a wonderful team. 🤗🥰

I developed an interest in B12 deficiency with my sister Anjali Patel whilst helping with the care for our parents who both had B12 deficiency which we discovered later be pernicious anaemia affecting various family members, including myself. Both our parents sadly passed away from strokes as multiple symptoms remained undiagnosed for too long. This led to a passion to support people suffering b12 deficiency and to raise awareness to public and professional.

In 2019 after fainting twice I discovered my B12 deficiency issues so this further raised my desire to learn more, and eventually led me to create the B12d charity WhatsApp support group to share experiences and knowledge. My interest in sharing health information led me to find good speakers and organise the health talks for our monthly zoom meetings.

Dr Chandy was an amazing, caring GP and his ‘Inside Out’ and Sally Pacholok ‘Could it be B12’ videos first sparked my interest in b12 deficiency.
Much thanks to Dr Joseph Chandy, Tracy Witty, Professor David Smith, Dr David Morris, Dr Andrew Klein and friends like Wilma Loren, Hugo Minney and Dominique Lydon who all provided personal support and shared valuable information, especially about inborn errors of metabolism, genetics, and the detrimental effects of homocysteine resulting from B12 deficiency, contributory to our parents stroke’s. Patrick Holford highlights the adverse health impact of the ‘H’ factor.

It’s so tragic that so many people continue to suffer or die needlessly over vital nutrient that costs very little but can massively improve quality of life, save lives and even save the NHS millions from misdiagnosis.

There is no better research than real life experiences and stories. We learn best from supporting one another. As a charity B12d.org continues the brilliant work of the charity’s inspirational and dedicated founder Dr Chandy. He advocated ‘Giving you back YOUR life’ by putting his patients needs above NHS protocols, so practising by a Dr’s oath of ‘First do no harm’.

I’ve been working in Film & video production over the past three decades, spanning social-educational, commercial and environmental sectors. I’m keen to support B12d awareness through patient advocacy by highlighting and promoting the value of patient stories. I’ve learned at first hand how the patient voice is little heard and occasionally ignored. My own experience of B12 deficiency has given me a painful insight into the widespread lack of understanding in effective diagnosis and treatment in some areas of mainstream medical practice.

Having experienced the work of Martyn Hooper at Pernicious Anaemia Society and the progressive approach to diagnosis and treatment by Dr Chandy, I discovered how beneficial and powerful support networks can be for sufferers. Dr Chandy has inspired me to work with the B12d Support Group to help find new and more effective ways to bring this under-recognised condition into the public domain. I’ve heard many heartfelt stories saying ‘Dr Chandy, you gave me my life back’. The impact of these stories are real and provide confidence to begin self-treatment where there is a lack of recognition of the symptoms of B12 deficiency. These testimonies and personal experiences need to be shared and brought to the GP surgery and beyond.