Work by a De Montfort University Leicester (DMU) academic and the Pernicious Anaemia Society (PAS) has led to improved treatment for people with the autoimmune condition.
As both a pharmacist and a patient, Dr Nicola Ward was concerned that the dosing schedule for treating pernicious anaemia - the most common cause of vitamin B12 deficiency in the UK - was not sufficient for many people's needs.
After two years of research, the Pharmacy senior lecturer submitted her findings to the British National Formulary (BNF) committee in conjunction with the society, leading the dosing handbook to change its recommendation for maintenance treatment.
Dr Ward said: "The recommendations have been changed from a three-monthly intra-muscular injection to a two- to three-monthly dose to acknowledge the inadequacy of treatment for some patients in the UK.
"While the change may be small, it's a big step towards the society's goal of getting patients treated according to their individual needs.
"I feel this is a good example of collaborative working between a university and a patient-led organisation, including input from students. It's the culmination of tireless work."
Around 10 per cent of the UK population is thought to be deficient in B12, with the most likely cause absorption difficulties including autoimmune pernicious anaemia.
Symptoms can be non-specific, such as fatigue, which can lead to delays in diagnosis, while some commonly prescribed medications can further lower stores. When B12 levels become dangerously low, the function of the nervous system is affected.
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PAS chair Martyn Hooper MBE said the most common complaint by society members was the "one-size-fits-all" treatment.
"Eight out of 10 calls to our hotline relate to treatment, with patients seeing a return of their symptoms long before their next replacement therapy injection is due," said Mr Hooper, who had to take early retirement from his job as a lecturer after developing nerve damage due to late diagnosis.
"Patients who are unable to get treated according to their needs by their doctor usually resort to self-treating."
Concerned about safety, that patients, including herself, were being let down and that the dosing schedule lacked a reliable evidence base, Dr Ward embarked on her research mission.
"With the support of the society I put together a survey to find out more about what treatment patients were getting," said Dr Ward, who then carried out a literature review to pull together the written evidence.
"I had three students helping, which was the icing on cake. One organised a focus group with patients and the other two did in-depth phone interviews for more personal, deeper perspectives.
"This work gave the students a good understanding of the condition and treatment, while helping patients feel validated."
The amended dosing schedule is now live online and will be in the next printed version of the BNF, while the National Institute for Health and Care Excellence has also agreed to produce new guidelines.
Mr Hooper added: "Already, this change has made a vast improvement to the way patients are able to live with the disease. We have received several hundred telephone calls thanking us for getting two-monthly injections for patients, who are now able to live with the condition better."
Posted on Tuesday 8th January 2019