Today, we got to meet a fairly cool group of medical students. A group who had raised £22,000 for charities over the past year, and who had decided to give 1/3rd of that to ROSY.
As Little Fish and lots of friends played croquet, the rest of us less energetic ones chatted to these student doctors. And we talked about their recent placements, and our experience of hospitals and doctors.
And here's the advice I'd like to give - boiled down from what most of us were saying to them at the time.
First of all, listen.
When you're faced with a medically complex, profoundly disabled child, listen to the parents. Don't panic about the various chronic conditions the child has, see past them to the present acute need. Listen to the parents.
Think about whether you actually need a full medical history. When you have a teenager in front of you, do you really need to ask questions about pregnancy and gestation? Think about the impact some of your questions may have on the parents; remember that some of the information you might want to gather could be fairly sensitive. And remember that we love our children, that we think their lives have value, and we believe their quality of life is generally pretty good.
So, listen. If the parents tell you not to worry about the fact that the child is having a seizure, don't call the crash team. It might just be that seizures are a normal part of life for that child. If the parents tell you you'll never get blood out of that particular vein, consider the fact they may well have met many other medical people who might have tried before you got here. If we suggest that a certain proposed treatment will have negative consequences, accept that we might just be speaking with the voice of experience.
Forgive us when our timelines are muddled. If we've been up all night several nights in a row, we might be having difficulty remembering what day it is today, let alone when this present set of worrying symptoms appeared. We might need to give you more information, in a fairly rambling monologue, than you think you need. Sit down, if you need to - we need to give you this information.
Please, treat our children as human beings. When I tell you my child can indicate yes and no, wait for me to let you know how she does. You might well think I'm delusional, but if you could swallow that superior look and let my child show you what she can do, it would be much appreciated. And if you won't address her directly yourself, please be patient whilst I do so on your behalf. Do NOT stick my child with a needle when I'm only halfway through telling her that's what you need to do.
Don't be afraid to say you don't know. We don't know either, that's why we've come to you. It is OK for you not to know either; if the answer were something simple and straightforwards we would probably not have needed to come to you in the first place.
You are undoubtedly the medical experts. But we are the experts in our children. Listen to our suggestions. Wait until we get through the whole explanation of what we think might work. Even if you think it's ludicrous, please wait until we've finished explaining our reasoning before you shoot us down. And, ideally, please don't shoot us down!
We're not expecting you to fix our children. We're not expecting miracles. Please remember that when we come through A&E, we're looking for a short term solution to a short term problem. We know that our children aren't going to start walking and talking as a result of your treatment - but we also know that they are still children worthy of receiving treatment for their current emergency. There are all sorts of multilayered DNR forms our children may have; please take the time to read them if they are in place before you make assumptions.
Thank you. Thank you for wanting to work with our children. Thank you for coming to see our children, even if they scare you. And thank you for listening.