For many of us, childbirth is the first real dealing we have with hospitals. If our baby is admitted into special care, this maybe the very first time we have had to deal with doctors, nurses and allied medical staff. I wanted to share some of my experience and tips for dealing with doctors in particular.
Prior to having Joseph I had worked as a specialist carer, often supporting people with complex medical conditions in their dealings with doctors, and attending during hospital admissions. Later I worked for a medical insurer, part of my role was liaising with hospitals and consultants. I hated challenging consultants and asking for rationale for decisions. I felt out of my depth, but I got used to it. This experience really helped me during Joseph’s admission.
- There are several doctors you will encounter during your child’s admission, at various levels of experience. Keep a notepad and write down their names and titles, and ask early on who the consultant is in charge of your child’s care. This link will explain the names of the types of doctors and their level If you see new faces during your stay, ask who they are and what they do. It’s your right to know who is involved in your child’s care.
- Once you have found out who the consultant in charge is, use them. If you have questions that are more long term in nature, this is the person to ask. The consultant should offer you an appointment to discuss your child’s care, and offer you their secretary’s number. They are your first port of call for medical questions, and although they are very busy people, they are eager to help you learn more about what is happening, as ultimately, you will be the child’s principal carer.
- No question is stupid. Medicine is about the asking of questions and finding the answers. Ask questions. Sometimes the most basic of questions will help a doctor crystallise their thinking, and direct them. You are the most important member of your child’s team and have every right to feel informed.
- Keep that notepad handy, write down your questions and the answers, ask for complex terms to be explained, or spelt out. No one expects you to know everything, and particularly in times of stress, it is very hard to retain everything, especially if you need to explain it to someone else later.
- It is ok to challenge. In medicine there is often more than one way of doing something, and more than one answer. If you feel something isn’t right, or isn’t what you have been told, its ok to query it, or ask for another opinion. It is also ok to ask how their opinion is based. Is it from a test result? Is it from experience? For example, I was told Joseph would never be able to eat and would be tube fed. I knew that the hospital we were in had limited facilities for tests, and asked how the doctor arrived at this. She said it was her experience of babies like Joseph. I knew at that point it wasn’t based on clinical evidence, but opinion, which is fine, but I knew then that it may not happen and it was ok to keep positive. As it turns out, Joseph did not require a long term tube.
- It’s ok to ask for things to be explained again, or a different way. A lot of the care of babies in hospital is incredibly technical, and a lot of the time things have to be done incredibly quickly. In the care of babies, there is no lee way. With an adult sometimes you can afford to wait 2 days for blood test to come back. In babies things often have to be done immediately, like antibiotics or lumbar punctures, as blood cultures take days to come back. This should all be explained to you, but sometimes, things are so fast paced, that you can feel lost and confused. Staff should be happy to explain things again when things have calmed down.
- Learn how your unit works. In ours a lot of the everyday decisions were made by the nursing staff, not by doctors. How often feeds were given and how, whether a baby was well enough for handling, which babies were in which sections of the unit were made by the nursing staff not doctors. It’s handy if you can work this out at the beginning as it will help you direct your questions to the right person.
- Don’t use Google if you can help it. It’s ok for general definitions, but anything else, its not the best tool. Medical information can be interpreted different ways, some people write articles (like me!) from their own personal point of view, and the internet is full of outdated and just downright inaccurate information. If you can, ask your medical team. If you can’t helplines run by organisations such as Bliss or Tommy’s can help you.
- If communication is breaking down between you and the hospital, don’t be afraid to use the complaints system. Every hospital in England has a PALS office (Patient Advisory and Liaison Service) PALS can do all sorts of things, from gentle chats with doctors, to full on complaints procedures. Sometimes it helps to run something past PALS to just see if you have grounds for feeling upset or left out. PALS can help things get back on track again.
- This may sound strange, but make friends with your chaplaincy service, even if you are not remotely religious. Often the chaplains have time to talk, often have medical knowledge and very often have close ties with the NICU. I found the chaplains were invaluable for helping me with questions, and finding someone to ask, they really helped me make sense of what was going on. Chaplains do a lot more than just pray for people who are dying, and offering communion to old people. The chaplains would also pop in and visit Joseph, and leave a little calling card so I knew that had been.
Useful numbers and links:
Bliss Family Support Helpline: 0500 618140
Tommy’s Midwives: 0800 0147 800