An open letter to the nurses we have known

Firstly, and most importantly, thank you for looking after my child when she is unwell.

When my daughter is sick enough to be in hospital, she is usually very sick. The fact that she is always somewhat sick does not make it easier to bear the times when she is very sick. In many ways it makes it harder, since I know that not all children get better all the time. So if I tell you that my daughter is ill, or that I am worried, don't say "she looks alright to me". The signs that she is unwell can be extremely subtle; that's one of the reasons why I stay with her, to interpret for her and for you. Don't assume I ever get used to sitting by her bedside watching her fight for breath.

I do know my way around the hospital, this is true. Please don't assume this means I remember where your linen cupboard is, or that I know how to access the parents' rooms. It was only on the last day I spent on your ward that I realised there was a washing machine available to parents - this is the sort of information it would be useful to tell us when we first arrive. Or at least that second day. Especially if it's an emergency visit.

To the nurse who sat down and figured out a decent workable pain management plan and then made sure it was implemented, thank you. To the nurses working the shifts before this nurse came on board, please consider taking the time to do this yourselves. It only took her ten minutes, and it saved her a lot of time running about checking the charts for the rest of the night. And it kept my daughter out of pain.

I appreciate that there are other children on the ward, and I understand that some of them may be sicker than my daughter. For future reference though, the nurse who said "I'm very sorry but we are really busy at the moment; I should be able to be with you in twenty minutes" left me in a much better mood than the nurse who said "There are ten children here you know". I don't need to be made to feel bad for requesting help with my daughter.

Please don't be offended when I double check the drugs you are giving my daughter. I know you've read the chart; I know you've checked with the other nurse in the room. It is not that I don't trust you personally. It is simply that my daughter has, at times, received the wrong dose of medication. So if something looks different to what I'm used to, I will check that. The response "we use a higher strength solution so the volume is less" is more likely to fill me with confidence than "I've checked it, we don't make mistakes".

I understand that things get very very busy on the ward, and that certain things are beyond your control. I would therefore like to say a particular thank you to the nurse who let me know what time the ward was likely to be at its most quiet, and who suggested that I waited until then to go and find something to eat, because she would then be able to send in an HCA to sit with my daughter. I know things can change suddenly, but knowing that things were likely to be quiet meant that I could relax a little more whilst off the ward.

I did appreciate the short chats we had when things were quieter; thank you to those of you who came to see us and spent a bit of time just generally chatting and trying to bring my stress levels down. That was truly appreciated. However, to the nurse who spent ten minutes ranting about the stupidity of nurses working 12 hour shifts, and how dangerous it was to be working for the final four hours, and how easy it was to make mistakes, I'd just like to ask did it not occur to you that my daughter was being nursed by many staff working 12 or 13 hour shifts? I didn't need to know the research showing how dangerous that was; I needed to be able to have confidence in the staff caring for my child.

To the nurses who allowed me into the recovery room as soon as my daughter was out of theatre, thank you. To the nurse who didn't let me know when my daughter was out of theatre until I asked, and who then did not come and find me when my daughter was ready to return to the ward, do you know how much that upset me? I appreciate that different hospitals have different policies on allowing parents into the recovery wards and that you are not responsible for those policies and can't change them. But you knew where I was, it would not have taken thirty seconds to keep me informed.

To the nurses who put down what you were doing (when it was safe to do so) and came to watch my daughter having seizures, so that you would know what they looked like, thank you. To the nurses who insisted tonic clonic seizures were the only seizures which counted, I suggest you obtain some epilepsy training. Stat.

To the nurses who stayed on hours past the end of your shifts, in order to give full and proper handovers, in order to write notes, in order to change beds and adjust oxygen settings and give meds and speak to doctors, THANK YOU. You shouldn't have had to do that, and I know you do it day after day after day. Thank you.

To the nurses who took the time to get to know my daughter, thank you. To the nurses who spoke directly to my daughter, thank you. To the nurses who listened to me, who asked me to explain treatments to my daughter before carrying them out, and who gave me the time to do so, thank you. To the nurses who did not know how to speak to my daughter but who tried, thank you. I hope my suggestions were useful. To the nurses who marched in, spoke to neither of us, and injected my daughter or rolled her over like a slab of meat, I hope you understood that my anger was directed at your poor practice, and was not simply because I was stressed. I hope you listened to my explanations and realised that my daughter is a human being and needs to be treated with dignity. I suggest some training in learning disabilities. To the nurse who brought in stickers and feathers for my daughter, a very big thank you!

To the nurses who worked with us several days in a row, thank you. To the staff nurse who put different nurses with us every shift "because they all need to learn about complex needs", whilst I appreciate the fact that our experience will benefit other children, please think about the effect this had on us. We had to train new staff, every shift, and that is not a swift process. It meant that I was unable ever to relax knowing that my daughter was being cared for by someone who knew her. To the nurse who realised this was happening, and swapped with one of the new nurses for a few hours, thank you. Similarly, to the nurse who watched me count up all the student doctors, student nurses, student therapists all joining in on a wardround, and who rounded them all up and got them to leave us alone with the doctor for a while, thank you.

I know it isn't your job to keep music playing for my daughter when I am not with her. To the nurses who promised to keep an ear out and hit the play button when the CD finished, thank you. To the nurse who snapped that she didn't know how to use those things, and who refused to enter the room so I could show her which button to press; you left me with the choice of going without food or leaving my daughter unhappy. Why did you think that was acceptable?

To the nurse who took the time to sit down and explain what various things meant, thank you. To the nurse who wasn't working with us but who had heard we were in, and who came to visit on a break, thank you too. To the nurse who made sure the Dr sat down and talked about the implications of certain discoveries, thank you. To the nurse who sat in on the Dr's discussions so you could make sure I had heard things properly, thank you. To the nurse who popped back in again after the ward round to check that I was ok, thank you.

To the nurse who broke all the rules and made me a cup of tea one night; I think you very possibly saved my life.

To the night nurses who sat down and played a game of cards, loudly, at the nursing station - please don't do that again. I am sure a night shift when you only have three patients, when all three patients have parents with them, and when none of the patients is ill, must be boring. But keeping the parents awake with the noise of your game, that doesn't go down too well. I appreciate there is only so much admin which can be done overnight, but perhaps I could recommend some reading for you. Epilepsy awareness perhaps? Or profound and multiple learning disability? Or visual impairment training. Failing that, may I recommend reading magazines and eating chocolates as a quieter occupation?

To the clinic nurses who insist on weighing my daughter before clinics, please request or fundraise for a set of hoist scales. When I state that I do not wish to stand on the scales myself, please respect that. You don't know what reason I may have for not wishing to know my own weight. And having you know my weight and not me, that isn't a solution either! Additionally, although I can at present hold my daughter safely whilst standing on a regular set of scales, the time will come when that is no longer a safe option. I refuse to believe my daughter is the only child you see who cannot sit on a pair of scales herself - please get the correct equipment.

To the clinic nurses who think my child will not need magic (numbing) cream because she doesn't understand what is happening, shame on you. To the nurses who allow me to hold my daughter's arm steady for you and believe me when I say I have done it before and will manage just fine, thank you.

To the clinic and community nurses who tirelessly chase up appointments and treatments, phone between clinics to check progress, spend hours sorting things out for us, cheer when things are going well, send my daughter birthday cards, thank you. You simplify our complex lives.

My daughter is always going to be disabled. I am familiar with her disabilities, and I am the expert in my child. Thank you to those of you who recognise my expertise. Thank you too those of you who realise that a new need, a new diagnosis, is going to upset me as much as it would upset the parent of any other child who hears bad news for the first time. Thank you to those of you who take the time to educate me about the new needs, new concerns, who enable me to remain the expert in my child. Thank you to those who help me to have confidence in my ability to carry out new treatments, live with new risks.

There may well be times when you can't do anything for us. "I'm sorry, there's nothing more I can do at the moment" is a better way of turning us down than "that's just the way it goes sometimes" or "you always knew this was a possibility". Tread softly.

A few tips. Please don't be offended if I forget your name. I'm operating on very little sleep and my daughter is my focus. If you are a student nurse, please tell me you are a student nurse. Unless there are 12 of you in the room all at the same time I'm not likely to object to your presence. And your somewhat naive and occasionally insulting questions will be answered with more sympathy and in a more educational manner if you are open with me about the fact that you are tying to learn things before you qualify. Listening to me explain a complex query about drug interactions and possible seizures and letting me ask it over the course of ten minutes before saying "oh I'm just the student; I'll get one of the nurses to come and see you" is not helpful.

Finally, thank you to those of you who realise that my daughter is my life, she is my daughter.
Thank you to all those of you who realise that although my daughter is very profoundly disabled, she still has a good quality of life. That she does not have a DNR order, and that she does not at this point in time require one. That her doctors and I are in agreement that she is for full and active treatment. To those of you who disagree with this, the person to argue it with is the Dr, not with me, and definitely not in front of my daughter. To those of you who spent time trying to find her smile and watching her melt into a puddle of giggles, thank you.


Tia