Advocating for yourself in emergency situations
by Erin Garde, published 5 May 2023
“The only source of knowledge is experience.” (Albert Einstein)
There’s nothing quite like the realisation that something might be up with your shunt to strike anxiety in the hearts of the people living with hydrocephalus in our community. My own hydro warrior husband describes it as a fog descending, blurring the edges of his senses, with a side serve of an excruciating headache that only happens when there’s something wrong with his shunt.
It’s at these times, when you need help the most, that it’s sometimes the hardest to advocate for yourself. Unfortunately and for various reasons, sometimes hospitals aren’t the best at responding to suspected shunt failure, even though it is a medical emergency that needs to be resolved as soon as possible.
Sometimes this is because of failings in the system. Ever since covid hit in 2020, hospitals and EDs have been stretched to capacity and sometimes that can lead to delays in diagnosis and treatment. Sometimes it’s due to failures in communication within and between departments. And sometimes it’s because of the relative inexperience with and lack knowledge staff have about hydrocephalus in the first place.
Of course, none of this is very helpful when you need help for suspected shunt failure, and you need help now! So, to give you a hand, we’ve put together a list of five ‘commandments’ you can use to make it easier to advocate for yourself in shunt related emergency situations.
The five commandments of getting help
Commandment #1 Know thyself and thy neurosurgeon
Knowledge is truly power, so when you are well, it can be useful to sit down and have a think about what signs and symptoms you experience personally when there’s something wrong with your shunt. Everybody is different, some people living with hydrocephalus in our community report intense headaches, nausea, vomiting, sensitivity to light or noise, confusion, and drowsiness when there’s something wrong with their shunt.
What happens to you? Do you experience core symptoms like my husband when something goes wrong, or is it different every time? Make a list and put it with other important documents (like scans and contact details for your neurosurgeon) in a place they’re easy to grab on your way out the door to the hospital if you need to go. That way, you’re not relying on remembering key symptoms and what happens for you when you’re in pain, feeling foggy or confused in the ED.
It’s also a good idea to build a relationship with the neurosurgeon who helps you manage your hydrocephalus before you are unwell. Make sure their approach and manner are compatible with your needs, and take your support person along to meet them as well. Often it’s your support person who will need to advocate for you when there’s something wrong with your shunt as you might not be able to at the time.
Finally, meeting your neurosurgeon beforehand also helps them to see you when you’re well so they can understand the difference when you are not well. This can often smooth out the bumps in the road and speed things up when you go to ED because they can see the difference for themselves.
Commandment #2 Know your rights as a patient
Did you know that all Australian hospitals are required to adhere to a Charter of Rights for all patients they look after? The Australian Charter of Health Care Rights (Australian Commission on Safety and Quality in Healthcare, 2019) describes the minimum rights a person can expect to have respected when receiving care in any healthcare setting in Australia.
Here’s the link for the Charter: https://www.safetyandquality.gov.au/sites/default/files/201906/Charter%20of%20Healthcare%20Rights%20A4%20poster%20ACCESSIBLE%20pdf.pdf
After having a look at the Charter, if you’re concerned your rights may have been violated, or if you’re still not happy with the care you’re receiving, see commandment #3 for what to try next.
Commandment #3 Find out the escalation process and use it
Did you know that every hospital in Australia should have a documented process patients can find easily and use to escalate matters if they are not satisfied with the care they’re receiving at the hospital they went to for help? This includes not only care you receive as an inpatient, but the care you receive in the ED as well.
If you, or the person you care for are worried that you’re getting worse or about the care you are receiving, please ask the healthcare team or search for the hospital’s escalation procedure and follow the steps.
It’s your right to do so.
Commandment #4 Document EVERYTHING- or get a support person to do it for you
A lot of people living with hydrocephalus in our community tell us things get really fuzzy when there’s something wrong with their shunt. They also say it can be hard to remember specific details like names, dates, times, tests and treatments they receive when in hospital for suspected shunt failure. Pain and pain killers can also make things fuzzy around the edges and hard to remember, and some of our Hydro Warriors also say that memory loss is a symptom of shunt failure for them.
The take home message here is to write everything down when you’re concerned about the care you’re receiving, so you don’t forget later on. Record things like dates and times things happen, the names of the medical staff that speak to you, the tests and procedures you have done, and the medications you take.
If you can’t do this yourself, have a support person help you with this. It can be really useful to have this information recorded if you want to use the escalation process, or if you want to complain later on.
Coming Soon...
Finally, coming in the August newsletter: a new resource to help you identify the escalation process if you’re not satisfied with the care you are receiving at the hospital you went to for suspected shunt failure.
This will be a database, organised by State and Territory, of the escalation process used in every hospital contributing data to the Australasian Shunt Registry. You will be able to look up a hospital in the database and find out what the escalation process is in that hospital, so you can use it if you need too.
References
Australian Commission on Safety and Quality in Healthcare. (2019). Australian Charter of Healthcare Rights. (2nd ed.). https://www.safetyandquality.gov.au/sites/default/files/2019-06/Charter%20of%20Healthcare%20Rights%20A4%20poster%20ACCESSIBLE%20pdf.pdf