If your child has an immunodeficiency, you will probably get to meet scores of doctors as the years go by. But coming face to face with them might still make you nervous maybe it is their manner, maybe you are always aware of just how crucial they are to your child’s health and wellbeing, or maybe you just do not like hospitals.

So how can you make sure you maximise your time with your child’s doctor?

Of course, you cannot map out exactly what happens but having information about how to handle the appointment will help you to feel more in control of the situation and mean you are more likely to get the help you need for your child.

In this section we include:

  • How doctors might make you nervous
  • Coping with nervousness and how to make the most of your time with doctors
  • An appointment checklist.

How doctors might make you nervous

All of us can get nervous talking to doctors and can come out of consultations thinking, I did not understand that, they did not listen, how do I take the medicines… With the help of the sections below, we want to make you better equipped to deal with these types of situations if they arise.

Here are some of the things that may have happened to you during a consultation and which suggest the experience was not as good as it should have been:

  • Withholding information or giving information in a cold or tactless manner
  • Raising his or her voice
  • ‘Talking down’ to you
  • Using medical terms unfamiliar to you and not explaining them
  • Holding discussions with you while standing in the doorway, implying he or she is really too busy to give you the time you need
  • Discussing serious or personal matters with you and your family or child in busy public places, such as waiting rooms
  • Pressing you to make serious medical decisions without adequate knowledge or time to think about it
  • Taking blood or samples for a medical study that is not explained to you
  • Not making available paper and pens in the waiting and consultation rooms to enable you to organise your questions and take notes.

Making the most of your time with the doctor

That crucial hospital appointment has been scribbled on your calendar for months, and in your mind you have asked a thousand questions. So what can you do to make sure you are not too nervous or bamboozled by the experience and get the most out of your appointment? Being prepared will put you in good stead to both gather and give as much information as possible.

Here are our top tips for getting the most out of your appointment:

  • Be prepared

Whether you are going to meet your child’s doctor for the first time or you have seen them on many previous occasions, it is good to be prepared.

Take time to make notes so that you have important information to hand without having to wrack your brains.

This will help to remove some anxiety, bearing in mind that getting to hospital involves dealing with so many other things, such as getting your child ready for the appointment and potential transport difficulties.

If you have not had time to make detailed notes before your appointment:

  1. Make a list of any medicines and pills your child takes, or bring them with you.
  2. Write down any symptoms that concern you (aches, pains or feelings).
  3. Write down when the symptoms started and what makes them better or worse.

Ask for an interpreter or communication support, if you need it – the hospital has to provide you with this help.

  • Give yourself a pep talk

Before each appointment, give yourself a pep talk so that you go into the consultation room feeling in control and completely confident.

Remember, you may be seeing a doctor who is an expert in his or her field, but you are a parent who is an expert in your child.

What you have to say about your child’s condition and your thoughts about how to manage their treatment is just as vital (some would argue even more so) as what the medical team is doing.

  • Write down your questions and concerns

As well as taking notes with you, write a list of questions you have about your child’s issues.

If you can, prioritise your questions. That way, if your appointment is short, you will be sure to get your most pressing queries answered.

Questions that remain unanswered could perhaps be emailed or left until your next appointment.

Remember, your child may have questions too. Ask them what they want to ask the doctor.

  • Ask a friend or family member to accompany you

Hospital appointments can be stressful. Taking someone with you, such as a friend or relative, may help to relieve that stress. A third party can offer emotional support, think objectively about what is being said, and listen and remember accurately what the doctor says. They can also take notes while you ask questions.

That way, you can hopefully relax a bit and feel that you have got as much out of the hospital appointment as you possibly can. Remember, it is your right to take someone with you, so do not be dissuaded by a doctor or anyone else.

  • Be on time and do not get stressed if the clinic is running late

Many doctors are guilty of running late. That does not give you a reason to be late for your appointment you can guarantee the day you turn up late is the day the doctor is running to time.

If the doctor is running late and it winds you up, remember they may be behind schedule because someone else is getting the help they need just think, it could easily be your child. If you work yourself up, you are more likely to forget crucial things during your own child’s appointment.

Bring something to read and something to keep your child occupied (as well as something for them to eat), and just keep as calm as you can.

If you have a late morning or afternoon appointment it might be worth ringing the doctor’s receptionist before you leave to ask if the doctor is running late. You should ask at reception on arrival too, just so you have an idea of waiting time.

  • Try to stay positive

You may feel angry and frustrated at times, but it is vital to try to stay positive, especially when you are seeing the medical team.

This does not mean you cannot show your emotions or explain how difficult you may be finding something, but focusing on being positive and removing extreme emotion from a situation may help you get what you need (e.g. getting tearful during a meeting is different from shouting because you are stressed).

As time goes by and you deal with more and more doctors, you will get better and better at communicating with them. Communication and interpersonal skills take time to master, so do not be hard on yourself if you struggle at first.

  • Take notes during the appointment

Taking notes during your child’s appointment will help to crystallise what the doctor is telling you.

If you do not want to write the notes down, record the appointment (e.g. with your smartphone) or get a family member or friend to make written notes for you. This will enable you to review the appointment at your leisure once you are in your own (less stressful) environment. You also have the right to request a copy of the doctor’s notes.

Explain to the doctor why you want to record the appointment. In one study where appointments were recorded, 91% of patients thought the recording helped them to understand what the doctor said.

  • Ask for visual prompts

Your child’s appointment may involve being given explanations about something that is happening in their body or a procedure that is being planned.

If you are having trouble visualising what is being explained, ask the doctor to show you a picture or draw a diagram to help you understand what they mean. That way, you can take the picture home with you to keep on reviewing in your own time (as well as being able to show it to friends and family).

Ask the doctor to write down any medical terms, too. You can then Google the search term. When you Google, click ‘Images’ at the top of the home page and this will give you a selection of pictures to look at to help your search term make sense.

  • Ask how you can learn more

Ask the doctor how you can learn more about your child’s condition or the treatment they are going to receive.

See if the doctor can refer you to a pamphlet, book or other resource (e.g. footage on the internet) to help you better understand what is going on.

The more understanding you have, the more effective you will be in helping your child with the treatment and management of their condition.

Remember, if you believe you are not being dealt with properly, then you can complain.

You can find further information on this in our How to make a complaint about healthcare section.

Appointment checklist: before you leave the consultation

Before you leave your hospital appointment, make sure you are happy with the information you have been given.

Here is a checklist of points and questions you can tick off yourself as you go along. If there are any that have not been ticked, direct them at the doctor before you leave.

  • “I would like to check that I understand what you said”, then repeat back what the doctor has told you.
  • “Can you explain it again, please? I still do not understand.”
  • “I would like to have a copy of any letters about my child.”
  • “What are these tests for?”
  • “How will we get the results?”
  • “When will we get the results?”
  • “Who do I talk to if we do not get the results?”
  • “What do you think is the best course of treatment for my child?”
  • “Are there any side effects or risks?”
  • “How long will my child need the treatment for?”
  • “How will we know if the treatment is working?”
  • “How good is this treatment?”
  • “Have you treated similar cases, and if so, what was the outcome?”
  • “What will happen if my child does not have any treatment?”
  • “Are there other things I can do to help my child?”
  • “What happens next?”
  • “Should we come back and see you again, and if so, when?”
  • “Who should I talk to if I am concerned/if things get worse?”
  • “Do you have any leaflets about my child’s condition/this procedure that I could read?”
  • “Where do I get more information?”

Do not be afraid to ask for a doctor’s email address or secretary’s phone number. Both may come in handy in the future.