A large proportion of patients with a vitamin B12 deficiency self-inject medication sourced online, citing difficulty with accessing treatment from GPs.
Survey results from almost 1,300 patients found that 40% sourced vitamin B injections from online sellers based overseas.
More than half (52%) of those did not tell their doctor, researchers at the University of Manchester reported in the British Journal of General Practice.
The survey also found that those who self-injected were more likely to report feeling unsafe in primary care and, at times, they felt that they were not treated with dignity and respect.
Among those who felt they needed to self-medicate, the main reasons given were to improve fatigue and to reduce brain fog and pins and needles.
Understanding any negative effects of current practice and how GPs can better meet the needs of this marginalised group ‘is key to improving safety and care’, they concluded.
The NIHR-funded research found that only 31% felt staff knew everything they needed to care for them, and 56% did not feel listened to.
Almost half said their doctor did not always consider what they wanted for their care. Only 18% of people felt they got all the answers to questions about their care from healthcare professionals.
Many of the people surveyed would prefer their injections to be overseen by a doctor but felt they had no choice but to self-medicate more frequently to improve their quality of life.
When asked about the impact of Covid-19, 58% said the pandemic had affected their care, including treatments being stopped or cancelled.
Lead author, Dr Natasha Tyler said: ‘Patients with vitamin B12 deficiency often report feeling marginalised and describe their interactions with primary care as battles and report feeling stigmatised.
‘So, with little previous research in this area we were keen to understand why this was the case and to find out what impact there was on the safety of patients.’
She added: ‘We believe there is an opportunity for healthcare professionals to encourage patients to come to them for advice as our research showed that 72% are finding information around medication from online, closed support groups.
‘Healthcare professionals should work with patients, putting them first, to re-address the current policies and procedures. Doing this will help to increase trust in healthcare professionals and will therefore improve patient safety.’
Professor Azeem Majeed, professor of public health and primary care at Imperial College London said: ‘Many patients complain about issues such as access to GP services and booking appointments. These are due to factors such as a shortage of GPs, nurses and other primary care staff.
But he added: ‘The B12 specific issues are more surprising. The management of B12 deficiency is straightforward. There are though some patients who want to use higher doses and more frequent injections than recommended in NICE guidelines.
‘I would encourage patients to speak to their practice if they have concerns about their B12 treatment. But they will find that doctors won’t want to deviate from NICE guidelines.’
Dr Richard Cook, a GP in West Sussex said there was no doubt that B12 injections were delayed or stopped during the initial pandemic as it was deemed ‘non essential’.
‘Many patients felt strongly about this and let us know,’ he added.
‘In our practice, we offer injections and support to all patients with an identified B12 deficiency. Some patients feel as though they want more frequent injections, and occasionally we test levels to see if they are receiving adequate replacement, but I’m not sure how strong the evidence is to support this.’
GPs should consider periodic vitamin B12 testing of higher-risk patients who take metformin, even if they don’t display symptoms of deficiency, the UK medicines regulator said earlier this year.