The "How to Advocate for your Child" One
Have you got yourself a coffee?
Or a wine?
Or a snack at least?
You might need one, because this is a big one.
But it’s oh so worth it.
If you’ve ever been to an Emergency department, or have been admitted to a ward or intensive care unit with your child, you’ll be able to empathise with other parents that have had a similar experience to you. You might have had a positive, negative or neutral experience. But whatever it is, it’s YOUR experience. And you get one chance at it. You can’t ever get that time back, and unfortunately the memories of bad experiences in healthcare can stay with you for quite some time.
I have received so many stories from parents recently — and it’s been quite the mix of positive and negative experiences. The positive experiences make me feel so warm and fuzzy, and they really highlight exactly why I LOVE my job as a Paediatric Registered Nurse. Caring for children and their families in their moments of crisis is what it is all about for me. But the negative experiences are real, and they happen — whether they are intended or not. Hospitals are high stress environments, for parents, children and health professionals alike. I certainly don’t want to frighten parents, or paint a negative picture of our healthcare system. But, I think it is really important to help parents understand why things happen in hospital that aren’t optimal, and how to advocate for yourself, and your child in the future. Similarly, this is not a “lets-bag-out-all-health-professionals” blog. This is a way to help parents feel heard, and to give some insight and practical tools to be able to advocate for their child in the future.
So, to start off with, these are the six main negative ‘themes’ that parents have encountered when in hospital with their sick child (in no order of significance or commonality);
Health professionals acting in an unprofessional manner. This includes health professionals speaking or communicating to parents in an angry way, health professionals speaking about fellow colleagues disrespectfully, or health professionals discussing their own personal or private matters around parents (whether directly or indirectly).
Not being heard. This seem to be a big one. So many parents have expressed their despair in not being heard by multiple health professionals. This has been portrayed in so many ways, such as their pleas for help being dismissed, or details about the symptoms of their sick child have been ignored or deemed “insignificant".
Being ignored because they are a “first time parent.” These parents feel like their concerns are not valid in the eyes of health professionals because they lack experience being a parent, and therefore their concerns are not as valid as someone with multiple children.
Significant break down in communication. This ranges from having limited explanations about what the plan is for their child, using medical terminology that is not understood by parents, multiple treating teams having varying opinions on the plan of care for their child, or staff not updating parents on what to expect about their stay in hospital.
Parents being made to feel like they are a “bad” parent. This could be because of the way a health professional has communicated with the parents, or it could be because of an injury that has happened to their child, or because they did not do “something” that was expected of them (such as providing pain relief).
Long waiting times. These wait times happen from the time parents present to the Emergency Department (ED), to seeing an ED Doctor, to seeing a Specialist for admission, to obtaining a bed on the ward, to seeing the ‘team’ on the ward and being discharged home. There are always long waits.
Without providing excuses, there are always two sides to every story. Some of the experiences parents have had in hospital are inexcusable. But sometimes things happen due to a cascade of events, involving many different people and systems. Health professionals these days are generally under immense stress. This comes from an overwhelming number of children presenting to hospital, being admitted to the wards, and not always having enough staff for this number of patients. This is not a parents fault. It shouldn’t happen, but it does, and as a result it sometimes means that staff cannot provide the care that they want too. This stress and heavy workload can then spill over into poor communication skills, unprofessional behaviour, or a lack of necessary emotional support for parents.
So how does this impact parents? What can you do? You are helpless, and at the mercy of health professionals right? Wrong! There are always ways to advocate for yourself, and your child in order to get clarification on why things have happened, or to provide understand what is going to happen.
Here are some ways you can advocate for your child (and yourself) if you are confronted with a challenging situation in hospital
Everything points back to communication. So, communicate, communicate, communicate!
Voice your concerns, your confusion, and your troubles. The sooner you can speak up, the sooner health professionals can understand there may have been a communication break down, or they can endeavour to get the ball rolling to help you. I can guarantee most health professionals truly want to help you and your child. But often they are incredibly busy with a never-never-ending list of things to do, and they probably don’t know that you are feeling <insert your emotion here> You, and your child are really important to them, so help them — to help you — and speak up. Don’t forget, you are probably incredibly sleep deprived, exhausted, overwhelmed and very worried about your child. Try to take a breathe before speaking out before you add any tension from your end. I don’t like conflict either, but you are well within your rights to question something, ask for more information, ask for another staff member -anything to feel comfortable if you feel like it is not right.
So, who can you talk to?
Absolutely anyone.
Any member of your child’s team is there to help you. If they cant help you directly, they will pass on your concern to someone that can.
These are the key players on your team:
Your child’s nurse. Nurses are the bomb dot com (I know, I’m biased), but they are the glue that holds everything together. They are the ones that are always there — because they are on a 24/7 rotating roster. Although it is possible you have no idea who your nurse is because they may be ion a change over of shift, but your could ask any nurse that you see and they will point you in the right direct.
Your child’s Doctor. There will likely be MANY members of your child’s medical team. They come onto the wards in swarms and you are greeted with about 2400 eyes all at once. But, this means you also have about 2400 ears to listen to your concerns, and make a plan for you.
The Nursing Team Leader. There will be a team leader on each and every shift. They will be there to help you if your allocated nurse can’t, or won’t.
The Nursing Unit Manager. This is the ‘boss’ of the ward/department. They will get the ball moving for you. Especially if you feel like you aren’t being heard. These players are particularly important if you are having trouble with health professionals outside of the nursing profession.
Complaints centre. All hospitals will have slightly different processes to manage complaints. But the key here is to know that there is always someone to talk to if you feel like your concerns are not being heard, or acted upon, from the people you have previously tried to talk with.
You can follow Ryan’s Rule. Ryan’s Rule is a system (within Australia) to help parents, families or carers obtain help for a loved one that they fear is not getting better, and ‘no one’ is listening. This service is not for general complaints, rather it is a safety net for those that are not getting the help they feel is required. I highly recommend you look into Ryan’s Rule if your child is in hospital and you are incredibly concerned and isolated.
The number to call is 13 HEALTH (13 43 25 84).
Ask specific questions. You will obtain a much better understanding of your child’s plan and condition if you ask very direct questions. Sometimes it’s hard to know what questions to ask when you are put on the spot, so here are some suggestions to help trigger your thought process and work out what information you need to help you understand;
What does that medication do?
How long do you expect my child be in hospital for?
What dose my child have to do, or achieve, to go home?
How serious is this illness?
I don’t understand what you are saying. Can you please explain it so I can understand?
Sorry, can you please repeat that?
Is there a fact sheet, or reliable website you could suggest for me to do some more reading about this?
What happens when we go home? Do I need to look for any symptoms in particular?
Don’t forget to ask about these things to provide some more comfort to your child:
Can my child go for a walk?
Can my child have a bath?
Can I bring coffee into the department?
Can I bring in some food from home for my child to eat?
Do you have any toys that we can borrow?
Can anyone sit with my child for a few moments so I can shower/go to the toilet/take a sanity break?
Being a parent to a sick child is hard. Being a parent to a sick child in hospital is harder. You have to think about time off work, or time away from your other children, or time away from your partner, or trying to work out everything on your own whilst still being available to care for your child. You are tired — mind numbingly tired, because chances are your child has been sick for a while before you ended up in hospital. It’s difficult to take in all the information that gets thrown around when you are in hospital. Similarly, emotions, body language and tone can all be misinterpreted which results in friction and tension between staff, children and families. But there is nothing communication, empathy and coffee can’t fix.
I understand most of this blog has focused on advocating for your child whilst in hospital…would you be interested in another blog on tips to advocate for your child in the community?