Eighteen months ago I submitted a re-evaluation request to the BNF asking them to look again at the treatment of Pernicious Anaemia. The frequency of replacement therapy injections remains the single most common cause of complaint to the PA Society. The re-evaluation was carried out, which involved a thorough investigation into any new research that had taken place around the treatment of PA (none was identified because no research had taken place), and the issue was then debated by a committee of the BNF which included my comments relating to the problem with some, though not all patients having problems getting a treatment regimen that is based on their individual needs. Because no new evidence in the form of published papers existed the committee deemed it unnecessary to issue an update on the treatment.
Friday’s meeting was the first opportunity for me to put the case for a review on a face to face basis.
The meeting was amicable and not unproductive. It was put to me that unless I could provide the organisation with evidence that some people need more frequent injections than others then the guidelines (and it was pointed out to me that they were just that – guidelines) would remain as they were. It was made clear to me that, just like other aspects of healthcare, the guidelines for treating patients with whatever disease have to be based on scientific evidence not least because of the risk of any litigation claims. That is why it is so important that we get started on the research that is already planned and financed into why patients’ needs vary.
There was one glimmer of hope, however. I was told that if I can provide evidence that some doctors are prepared to treat the patient according to their individual needs then the wording of the current guidelines could be changed to include something like “the treatment can be varied according to the need of the individual patient”. Again, it’s back to providing the evidence which is what I will now work on.