As part of “Primary Immune Deficiency Week 2018” UKPIPS Founder and Chair, Liz Macartney, was interviewed by a large number of commercial and national radio stations about primary immune deficiency (PID) as a condition – and the difficulties so many people experience in getting their doctors to diagnose it.
Far from being critical of doctors as a group, Liz highlighted the fact that information about Primary Immune Deficiencies is not taught in the majority of UK medical schools. Added to this, Liz maintains that PID is by no means as rare as many GP’s believe it to be. This opinion is supported by many UK Consultant Immunologists who feel the incidence of an undiagnosed PID could be as high as 1 in every 1,500 patients and not, as current statistics suggest, of 1 in every 16,000 patients. The ‘false’ belief that PID’s are too rare to check for, is sending many GP’s up blind alleys, convinced that PID is a rare condition because “it only appears in babies” or “it’s so rare, you can’t possibly have it”.
As these interviews confirm, the most common form of PID may not manifest itself until early adulthood – or even later. Moreover, there are many common infections that can waylay an undiagnosed PID condition and any patient finding themselves regularly visiting their GP surgery with the same or a similar repeat infection over a prolonged period, should query this with their doctor.
Liz’s message on repeat infections is very clear. Because patients may present at their GP with perfectly normal and easily diagnosed infections, regularly presenting with the same or a similar condition and not achieving a good outcome with a course of antibiotics, needs immediate investigation for the longer term. Therefore, instead of issuing yet another prescription for antibiotics, the GP needs to stand back from the situation and ask “why are these infections persisting”? Few GP’s do this, and In such circumstances where the patient is what doctors often refer to as a ‘revolving door’ (because the patient is coming to the surgery so often) – a blood test needs to be undertaken and a request for a pathology report on the patient’s immunoglobulin levels. Where these levels are low, or indeed non-existent, the patient should be referred by their GP to the nearest Consultant Clinical Immunologist with the minimum delay for further tests.
Click on any of the audio files we have listed below and listen to what Liz is saying. She is a PID patient herself of more than 30 years and while not a doctor in her own right, she is a professional patient and intimately acquainted with many aspects of primary immune deficiency, including how the condition is treated and variances in treatment. Indeed, it’s highly likely Liz knows a lot more about PID than the average GP, so please listen to what she’s saying and if you know someone who’s always ‘going down with the same or a similar bug’ you may well be glad you did!
Click on any of the stations below to hear Liz’s answers to the questions she was posed.
Clear and complete
British Forces Broadcasting Service
Please be aware the interviewer – through no fault of his own – did not have full access to his studio at the time of the broadcast. While Liz’s replies are clear, the questions are a little ‘fuzzy’. Even so, it’s well worth listening to as it becomes clear that the interviewer might be an undiagnosed PID patient!
Good – with some nice additional conversation
This is a compilation summary of all the questions asked of Liz by all the stations above. You hear her answers, but not the questions even though they are basically self-evident. A modified version of the podcast was also sent to a number of BBC local and national stations for transmission during PID Week 2018.