Following on from the segment in the June edition of the HFACT newsletter about presenting to the Emergency Department (see President’s Report, June 2018 newsletter, the original text of which is reproduced after this update), below are some key points to keep in mind if you need to attend the ED.
- There is a Medication Standing Order (MSO) in place which states that factor should be administered as a priority - that is, prior to investigative work (eg. scans, X-rays) being done. Don’t hesitate to alert the treating staff to the existence of the MSO. A copy of the MSO can be obtained from the Haemophilia Treatment Centre.
- If you feel your treatment is not progressing as it should and/or your concerns are not being adequately addressed, don’t hesitate to escalate your concerns to a senior doctor or nurse.
- Be aware that, as a result of a recent complaint about the timeliness of treatment, measures have been put in place whereby the Deputy Director of ED and Emergency Medicine Training, Dr Sam Scanlan, has requested to be notified when patients with bleeding disorders present to ED, so that he can review the timeliness of factor administration in each case over a period of time. What this means for you as a patient presenting to ED, is that you should not hesitate to alert your treating staff to this fact, as it should be helpful in expediting your treatment.
The following article appreared in the June 20edition of "ACTIVATED", the newsletter of Haemophilia Foundation ACT
I wanted to share with you an experience I had at the Emergency Department (ED) of the Canberra Hospital recently. There was a lesson or two for me stemming from the experience which may also be useful for you.
Firstly, the scenario. One of my three children with haemophilia was suffering a bleed, and given we are not yet infusing at home (my child is treated on demand and is not on prophylaxis treatment) I needed to take him to the ED given it was after hours and the Haemophilia Treatment Centre (HTC) was closed.
We were admitted to the paediatrics ward fairly quickly, but from there things slowed considerably. While some of this could be attributed to how busy the ED was that evening, the more concerning issue was that the protocols established by the Medication Standing Orders (MSO), the guidance provided in the standing letter we have from my son’s treating specialist (Dr Pati), and the directions on his MyABDR card, were not followed. To be more specific, while the MSO and our letter make clear that factor replacement therapy should be administered as a priority, with investigative work (e.g. scans, x-rays, etc) to be done after treatment, this procedure was not followed. Instead, x-rays were done, and after further delays, factor was ordered, so that the time that elapsed between our arrival in the ward and the actual factor infusion was more than five hours.
As this is not the first time it’s happened after presenting to the ED, although this was by far the most excruciating experience, my wife and I decided to lodge a formal complaint through the hospital’s consumer feedback mechanism. The hospital has been very responsive to the complaint, discussing various ways the process could be improved in the future, such as more frequent training of ED staff by the HTC about the importance of rapid treatment or guidance on how to escalate things in real time in the ward if you as a patient are not satisfied with the way your experience in the ward is unfolding. We are still awaiting a final, formal response from the hospital to our complaint. (Subsequently received after the publication of the article, hence the update at the beginning of this web page.)
So, what were the lessons for me? There were certainly a few. Firstly, be prepared to advocate more, particularly when you feel that things are not following the normal course of events as part of treatment. Secondly, bring a copy of the MSO if you have one, either in hard copy or as a photo on your phone, or at the very least ask the staff to refer to the MSO, which makes clear that factor replacement therapy should be administered as a priority. I didn’t…. If you don’t have a copy of this MSO, contact the HTC to obtain one.
Since this event, I’ve put a hard copy of the MSO in my car as well as taken a photo and stored it on my phone as a back-up. The original version is on my fridge.
So, what came of the complaint, which I shared with James Slade at the HTC for his information? Fair to say, I’ve been impressed with James’ responsiveness to my concerns and the ED’s response to the complaint. And even more promising, our next presentation to the ED, just a few weeks after the original incident, was a much better one – my son was infused without delay and we were back home within the hour. Without any prompting, the doctor mentioned that the ED had recently received a complaint about the treatment of someone with a bleeding disorder, and that James had spoken directly with ED staff about the importance of treating without delay. It’s encouraging to see patient feedback having a direct and timely effect. Nonetheless, I would urge anyone presenting to the ED not to hold back in advocating for prompt treatment, as even the best systems can fail to deliver at times.