In 2002 I was diagnosed as having Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia. I went out and bought a two-seat convertible sports car to celebrate the fact that my wonky and numb legs were due to a lack of a vitamin and not any tumour on my spinal cord. After a year of light duties, I was forced to take early retirement from lecturing and that’s when I started the Pernicious Anaemia Society. I steered the growth and prestige of the society for the next twenty years and, through the years came to understand that there are serious problems with the way this nasty ‘forgotten’ disease is diagnosed and treated. Along the way I started writing a blog that highlighted the plight of patients and their families who had waited sometimes many years for an eventual explanation of their often debilitating symptoms.
I retired as the Executive Chairman of the charity on April 1st 2023 after a scary medical emergency the previous year. But, and here’s the good news, you can still read those popular blogs by clicking here. Some are harrowing, some are uplifting but all emphasise the need for the issues surrounding the diagnosis and treatment of Pernicious Anaemia to be seriously addressed. I’d like to say that I hope you enjoy them – but that would be difficult.
Chronic Fatigue Syndrome/ME
Last week I was at a NICE consultation which was looking at the problems with the diagnosis of Myalgic Encephalopathy (or encephalomyelitis). Because there are so many contentious issues concerning the disease NICE are going to...
A Doctor’s Email
I recently received an email from a GP who wanted to know if we knew of anyone who required weekly injections to live a more or less normal life. I replied that I had and that many of our members need much...
Happy Emails
I am despondent! After the flu jab incident (and an aching arm) and the meeting with the GPs I have a right to be. And then, here come to emails addressed to me that have reminded me that I need to keep going. Email...
The Double Incontinent
So, here I am, presenting myself at my surgery to receive my flu jab (I know that there are people who are completely against this practice but I have consulted widely with healthcare professionals...
Appeal Tribunal Personal Independence Payment
Yesterday I travelled 75 miles to represent one of our members of the society at a Tribunal. The member, one of our earliest members, suffers from the worst effects of Pernicious Anaemia, had been...
Recent Guidelines
I’ve been busy reading new Guidelines for the National Institute for Care and Health Excellence (NICE). I am a Registered Stakeholder of NICE as Chairman of the Pernicious Anaemia Society. And as a...
High Dose B12 and Lung Cancer
Yesterday was a busy day. We usually get around 8-10 calls to our telephone helpline but yesterday we had only been open for two hours and already we had taken a dozen calls. And the reason for the...
Cause for Concern – Parents & Pernicious Anaemia
I have recently been involved with a case involving a two-year old, the son of one of our members. It’s an interesting case that highlights the problem of Pernicious Anaemia in young children. This isn’t the first case of infant...
Two Good – One Not-So-Good
Last week was quite eventful in terms of offering telephone advice. There was the Consultant Psychiatrist who was extremely worried about his elderly mother who was experiencing all the classic symptoms of PA but whose serum B12...
