Listen to me
I don’t want you to have made up your mind before we sit down. I don’t want you to blindly follow your guidelines. I want you to listen. I want you to listen to how my son is doing, how well we are coping, what the actual issues are. And, I want you to listen to my son. His question is the most important of all. He is, after all, the patient here.
When it comes to eczema, we know a permanent solution is not going to happen easily, possibly at all. But sometimes we just want a way to help our son (and us!) get more sleep. Or, sometimes it could be we want more explanation about something, or help on how to deal with his skin at school. At other times we want reassurance that it’s just a bad time for his skin and we are doing everything right. Listening to us means finding a solution that will work for right now.
I also want you to listen to our worries about particular treatments. If we raise concerns, we want you to hear them. Guess what? If we are concerned about something you suggest or we see no point to it, we won’t do it. That wastes everybody’s time.
Value my opinion
I know my child and I know our daily, family life. So my opinion counts, so does his. I want to be part of the decision and to be treated like a rational person capable of evaluating options, not just told what to do.
It works both ways too. If you don’t listen to me I’m not likely to value the advice you give me as I know you haven’t taken all the facts and opinions on board.
Care for us
Parenting a child with health problems is hard. It is my job to care for my child. I expect you to help me care for him, not make it harder. When we’ve waited for months to see you, waited hours in a germ-ridden waiting room trying to keep our child quiet and entertained for over an hour, what we want is to feel cared for by you.
At the end of an appointment, I feel like my ideal reaction would be ‘buoyed’: “we’re doing ok, it’s gonna be okay, we have a plan”. I shouldn’t come out feeling like I am going to cry before I even reach the car park. I shouldn’t feel frustrated and let down. I should have something to take away from it that can fill my little boy with some hope that this may not last forever.
In our experience we have met those that do the above and those that don’t.
Our last appointment did none of the above. It was a complete waste of time for us all – time off of work for Husband, time out of school for MyItchyBoy and yes, even a waste of the £2 car parking fee.
After that last appointment I realised that we were getting nowhere with the NHS and it made the decision to try the Dr Aron treatment for eczema so much easier. My next post will be on how we’ve got on so far (spoiler alert: lots of sleep, no scratching, happier child).