Advocating for safe healthcare for their children is an obvious priority for parents, but there's little advice out there on how to do it.
My "top tips", which come from my own experiences and the experiences of other families I am in contact with are below. If you would like to add to this list, or you are aware of resources for parents about this that I could share, please do email me your ideas.
1. Listen to your instincts
There is a ‘feeling’ when something just isn’t right. A niggling doubt or anxiety that doesn’t go away. Trust it. And make sure you tell the doctor you feel that way, and you would like them to take your instincts and your concerns about your child’s illness or management plan into full consideration.
2. Remember your child is unique and you know them best
Doctors have their own views on what is ‘normal’ for a child of your childs age. Be very clear about how your child usually is, and what is different now. You will know if breathing, skin tone, voice, energy levels, personality, playfulness ….etc etc is different at the moment to usual, far better than a doctor can decipher in a short consultation having not known your unique child before. Make sure you communicate it all.
3. Record Record Record!
When your child is displaying their worrying symptoms, video record them so that when you are in front of the doctor, you can show them exactly what is concerning you. Often our children don’t display the symptoms right at the moment they are in front of the doctor. I have seen doctors also giving this as a top tip, so make sure you do it if you can.
4. Write it down
Keep a ‘diary’ of your child’s symptoms, temperatures, what they eat, drink, pass, etc. Take it with you and show it to the doctor. Also write down your list of concerns and your questions and make sure you cover them all in your appointment. Tick them off as you go if you have to.
5. Check Check Check
As much as it might feel a little uncomfortable, ask the doctor what they have understood to be your concerns. Ask them to read back to you what they have recorded. If you think they haven’t picked up on something you’ve said, or failed to write something in the notes, make sure you let them know.
6. Who is calling the shots?
Sometimes the person making/supporting decisions about your child's care plan has not actually seen your child. If you are concerned that the plan doesn’t make sense, or your child is deteriorating without any intervention, check who is in charge and ask the person making decisions to see your child themselves, or at the very least speak to you directly on the phone. I have learned from tragedy that it is not uncommon for information about your child to be very ‘diluted’ by the time it reaches the decision makers, which can have tragic consequences.
Likewise, if your child is being referred, ask to have a copy of the referral letter. Contact the author immediately if you feel there is not enough information within it to convey what’s really going on.
8. Are you comfortable with the decisions?
If you are not happy with the decisions being made about your childs care, say so. Explain why. Explain what you are afraid is happening/going to happen. If necessary ask for a second opinion. Write down the names of the doctors you speak to.
9. If you are sent home and feel you are happy to be sent home at this point, make sure it is very clear what you can do if your concerns raise.
Have you got the phone number of the doctor, their secretary, or the ward? Do you know your childs hospital and NHS numbers? What signs and symptoms must you watch for? Have you got 'open access?' Do not be afraid to take your child back if your instinct is that things are not right.
10. Whenever you see a new doctor or nurse, check what their understanding is of what is going on
Have they read the previous notes? Do they physically have the previous notes to refer to? Can they read the handwriting within them? Do they know what's wrong with your child and any special requirements they have? Make sure they have the FULL history, and are very aware of what is required.
11. Know your observations
Children often have their temperature, pulse, blood pressure and heart rate checked. Find out how often these are needed for your child and remind someone if they miss a deadline. Say something if any are missed out. In a hospital the charts are kept on the end of the bed. Look at them. Ask someone to explain them to you. Check your child's observations are what they are supposed to be based on the ranges that should be part of this notes set. If they are not within the normal range, ask if it’s being investigated. If not, why not? Do not be reassured by assertions that anything out of range is due to anxiety/distress. If this is suggested ask for a repeat when the child is calm or asleep to make sure.
12. Know the medication
If your child is being prescribed a new medication, ask what the side effects might be. If a drug is being given on a hospital ward, you can ask what experience the staff have of giving it, and also giving it to a child with your childs illness. You can ask if any special monitoring is required whilst your child is on the medication and make sure it is carried out.
13. Ask to read your child’s full medical notes if you are concerned.
You can find out what's being recorded and identify any 'chinese whispers' unfolding if it is. You will not always be granted permission, but we are told by a paediatrician you are more likely to be allowed to do this if you ask a consultant, and if you ask during the day rather than during evenings or weekends. If you are refused, ask why, and ask what the quickest way is to gain permission to do so.
14. Sometimes, care provision during evenings, weekends and bank holidays is not as thorough as ‘business hours’
Be aware of this and be extra vigilant as a parent during these times, so you can help a stressed or overstretched medical professional not to miss something important.