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Rheumatology patients say they have been left feeling “frightened” and “in the dark” due to “shambolic” communication from Health after a critical review found more than half of them had been wrongly prescribed powerful drugs.
Announced last week, preliminary findings of an audit of Rheumatology Department records said that more than 170 individuals did not meet the accepted criteria for drugs known as biologics which suppress the immune system and increase susceptibility to infection.
However, several patients on biologics have reported that they were not told in advance of the findings being made public and still do not know whether they are in the incorrectly prescribed category.
Following a query about patient communication from Express, the Medical Director for Primary Care, Dr Adrian Noon, confirmed that, more than 24 hours after the findings of the review were made public, that the Health Department was still "in the process of writing to" affected patients to "provide reassurance on the latest developments".
A similar situation arose last year when the results of a PFAS blood test study were shared with and reported on by the media in advance of participants being told. The Chief Minister was forced to apologise for the "distressing" communications blunder after an official complaint was made.
One Rheumatology patient told Express of her disgust at the fact that the Government had prioritised informing the media and staff members of the preliminary findings of the review before the patients themselves.
The patient – who has been on biologic drugs for over two years – confirmed on Monday morning that she still had not received any communication from the Health Department, despite the preliminary findings of the review being sent to the media in a press release on Thursday morning.
She described feeling “frightened” and voiced concerns that other patients “may have stopped taking their biologics in fear”.
Another patient said that the last communication he had received from Health was a letter in April, when the rheumatology review was initiated.
Pictured: A letter which was sent to HCS staff last week – but affected patients have not received any communication since the preliminary findings of the rheumatology review were made public.
The letter informed him that he was one of the 341 patients prescribed biologic drugs whose notes were being audited.
He explained that he was “very concerned” about the prospect of being taken off his “amazing” medication, and emailed Medical Director Patrick Armstrong and the Patient Advice and Liaison Service (PALS) in April. He is still awaiting a reply.
The patient described the communication as “shambolic”, adding that he had been continuously attempting to call the Rheumatology Department but was only getting through to an answer machine.
“I feel like I’m in the dark,” he added.
Pictured: Rheumatology patients have described feeling "left in the dark".
The Health Department said that it was "too early" to establish whether anyone had suffered harm as a result of "inappropriate" prescribing when it announced the initial findings of the audit on Thursday. It also said that the problems uncovered may be symptomatic of other "serious" issues in Health.
On Friday, it was revealed that the two doctors at the centre of the review are "no longer undertaking clinical work" – but Government officials declined to confirm whether they are still officially employed or not.
Pictured: Chris Bown, Interim Chief Officer for Health and Community Services.
The Interim Chief Officer for Health added that the notes of all patients seen by these two doctors – including both rheumatology and non-rheumatology patients – will also be reviewed.
Dr Noon said: “We have been in contact with the affected patients since the start of the audit process in April, and are in the process of writing to them again to provide reassurance on the latest developments.”
He added: “Those patients who did not meet the accepted criteria for biologic drugs have been advised to remain on their current medication until they can be reviewed by a member of the rheumatology team for a second time.
“It should be noted that affected patients have already been reviewed once by a rheumatologist to ensure it was safe for them to continue taking their current medication while the audit took place.”
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