5 STEPS TO MANAGING APPOINTMENTS FOR CHRONICALLY ILL CHILDREN

I am very aware of the extra appointments we sustain for our chronically ill children. There is a huge difference in the organising, and record keeping that goes into managing a chronically ill child, than a child who is well and healthy. Our 7-year-old has never been admitted into hospital herself, and while this sometimes strikes me as unusual, not all children have. We don't have to keep folders of paperwork for her, or test results, or referrals, or reports. But for our other two children we do. The girls became seriously unwell, when the hospital was in a transition of storing all records online. So we went from an all paper based world to one where some information can be found online. As much as I love the online world, there are limitations to what it can do. I use and access both the online apps, and paperwork to keep our lives, and our children’s appointments in order.

Royal Children’s Hospital Melbourne has a patient portal where you can access a wealth of information. This is an incredible resource and sees me needing to carry a lot less information, either in paper copy, or in my head. This portal gives me upcoming appointments, medical history, emergency care, all specialist information, listed allergies, medications, and details if collected by an ambulance. This also has all upcoming appointments- time, date, and who they are with. So if I feel I have forgotten anything I can always double check on this app.

But for our day-to-day appointments it is vital that I stay on top of each and every one. We have close to two hundred extra appointments per year, sometimes more, and the information I receive in these appointments usually have steps that I have to make sure I complete once home.

Here are some steps I follow to stay on top:

1. USE A BOOK

I always have a writing book with me for any of the appointments I attend. The sole purpose of this book is to record any information on the girls, at any appointment we go to. Whether it be a meeting at the school, or a specialist appointment. I have one book for each new year, and record both of the girls' information in this one book. It records things like weight and height, information of what the doctor is telling me, test results, changes in medication, follow up blood tests, and upcoming surgeries. I write the date and the doctor, or school, or therapist we are with at the top of the page, so I can flip back to get this information if and when I need it. I also use this book to write my own questions. I always have things that I want to discuss and so does my husband. We have a conversation before the appointment and I write all of these questions into the book that I then take with me.

I have tried to carry two individual books for each girl, but found it was simpler to carry the one, as often they see the same specialists at the same time, so I record one girl on one page, and the other on the next. At the very back of the book I write ongoing important information, such as immunisations. As the transplants have affected each child differently, it has also taken away some extra immunisations that were done years ago. Some they are being treated for, and some they cannot. This information is vital to the ongoing management of diseases that can spread in the community, and in the school grounds. For the ones that can be treated, the process of doing this can be months apart, so I record this information here. I find it easier to record this sort of information at the back, where I can access it easily.

2. CREATE HOSPITAL FOLDERS

I also have folders for each of them. The folders are the simple binded A4 plastic slip in folders that you can get from anywhere. I label each folder with the girl's name, and store all relevant information in their folders, mainly for hospital appointments, such as:

Procedure plan for our anxious child that we developed with a clinical pain psychologist

• Blood slips, with the dates at the top for when they need to be done

• Upcoming appointment letters (I hold on to the appointment letters, even though we often have the information online- this has come in handy too many times to not have with me, at this stage)

• Upcoming surgeries, and the instructions around the surgery

• Referrals (we always get indefinite referrals from our GP, but the hospital drops this information off their system regularly so I always keep a paper copy of the multiple referrals we need to show when this does happen. This also means one less trip to the GP to get another.)

• Medication Spreadsheet- so I can go through the medication with each Doctor. (You can read more about the way I manage and organise medication here)

• Any extra letters that the Doctors may need to see- National Disability Insurance Scheme paperwork, information from the geneticist, or paediatrician, school or therapist. Usually information that isn’t connected at the Hospital.

Having all this paperwork on hand during each Doctor's visit allows me to answer the questions asked more accurately, rather than guessing. I also file the paperwork away as soon as the Doctor prints it, like blood test requests, medication prescriptions, and it makes it easier to stay on top of the requests from each of the specialists.

3. LOVE GOOGLE CALENDAR

I was first introduced to Google Calendar several years ago, and it has been life changing for me. I used to carry around most of the upcoming appointments in my head- as I was once very good at this. As our lives turned upside down, I found I was double booking, and forgetting important appointments. I knew I couldn’t continue this way as decision fatigue was very quickly setting in, and I started looking for a better system to use.

When I started putting all of the girls appointments into Google calendar it gave my mind a little more freedom. I use this calendar for all hospital, specialist, GP, and therapy appointments. It also allows me to have the conversation with my husband about all the upcoming appointments we have, without having to actually have the conversation. I enter the details in, invite him and he then has all the information linked into his calendar also. Again, this was one more way for both of us to stay on top of all the important details, together. It can also be done at any time. So I can book in an appointment with a therapist at the end of the sessions, trusting that any important events will already be in my calendar, and this makes it very clear what days and times I have available. I can also set reminders of the upcoming appointment if you want it to.

4. EMBRACE A FAMILY CALENDAR

Every year I create a beautiful calendar of our adventures and everyday moments from the year before. I have done this now for many years, and it has become a traditional gift for our family, for my husband's parents, and my Dad. The calendar hangs in our pantry and it is an easy way to see what we have coming up in the month ahead. I still love having a calendar hanging, as it not only reminds us of all the wonderful adventures we had this time last year, but it is an easy way to help keep all of us organised together. I use this calendar for appointments also, but not just for this. I use it for upcoming birthdays, events, school term dates, pupil free days, and holidays that we have booked, and are looking forward to.

I can very quickly see on this calendar the number of appointments we have coming up, where they are, and what we might need to prepare for the appointments. For example: If I know we are coming up to see a dietician, I would create one page in my book and write everything my daughter is eating and drinking for several weeks before the appointment. I know this is the question I will be asked as soon as I walk into her office. I have learnt that I don’t like to guess, as this doesn’t help the specialist, which in turn doesn’t help the health of my child.

5. COLOUR-CODED MEDICAL WHITEBOARD

I also have a large whiteboard hanging in our pantry. This whiteboard is used only for appointments, surgeries, tests, and blood tests. This is not for therapies, or school appointments. I have written each girl's name in a different colour, and write a list of all upcoming appointments under their names. I put the date, the time, and the specialist we will be seeing. I use different colours depending on what is needed. Blood tests will be one colour, surgeries another, specialists visits another again. This may seem excessive to do all these systems, but this whiteboard helps me separate the medical side of their illness with all else. It also allows me to visually see all the appointments that are coming up in the one spot, so I can find the gaps that the hospital often misses. This extra system may not be for everyone, but during our seasons of absolute chaos this helps me with all things medical. I use this system when we have an overloading amount of information that a paper calendar simply cannot hold, and a digital one cannot show me all together. This system works for our situation. I know of other families who just use the written calendar and a digital version, and this works for them perfectly.

We are under complex care at Royal Children’s Hospital Melbourne. The role of this division is to help families like ours in any way we need at the Hospital. They have nurses on hand for medical emergencies, but also nurses and reception staff to assist with the managing and organising of appointments. So if I get an appointment for one child on one day and the other the next (yes this happens all the time) I can call Complex Care, and have them contact each division within the hospital to get this changed. I always try to make the most of our time in hospital, and can often have up to 9 appointments in one day to try to get them the necessary appointments all at the same time. But what I have learnt is that the hospital, and specialists and therapies can be flexible with what time the appointments are. So if you are the one juggling, and still want to get a sibling off to school, then let them know. If they don’t fit in with your season, ask for this to be changed.

In summary

As seasons can change with chronically ill children, we adjust with these seasons. Now I try to make all of our appointments at a time where I can still get my 7-year-old to school, manage the long drive in, visit who we need to see, or do what we need to do, drive all the way back to the school and be there again to pick her up. There were times when this was not the priority. There have been times when keeping my seriously ill children alive was the priority rather than my 7year old attending school, and so we adjusted during this period. We have no family near us and moved to a new area when the girls started to become seriously unwell. We have made some wonderful connections to an amazing community, so I reach out for help if I need to.

Use the most of the time whilst at the Hospital. The number of visits we make to all of these extra appointments is huge, and can be very costly. The fuel, e-tag costs, parking and food, if you don’t pack your own, can be a small fortune for one appointment. Now we try to visit as many specialists on the one day as possible. This makes for a long exhausting day, but means less trips in and out.

We still receive many appointments from the hospital via mail. In fact I don’t rebook an appointment at the desk when we leave, as we usually want to get out as quickly as possible.

WHEN I RECEIVE AN APPOINTMENT IN THE MAIL:

• Input into google calendar- This rules out any important clashes of other events

• Write it on the whiteboard and make sure the time and day suits, taking her sister into account

• Write it on our calendar

• Put the appointment letters into the girls hospital folders

WHEN I ATTEND AN APPOINTMENT

• I always take my book, with a list of questions. With this book I record all information given to me from the specialist, with some notes on my follow up list.

• I take the girls Hospital folders with me to the Hospital appointments for record keeping, blood slips, medication prescriptions, and any further relevant information

• I use Google Calendar to record any further upcoming appointments

• When I get home I record follow up notes on the whiteboard, put any further appointments either on the whiteboard, or on the family calendar, or both

THERAPY AND SCHOOL APPOINTMENTS

• I either phone, or use email to communicate and book in therapy appointments.

• Agree on a time that suits. (If therapists can visit during school hours, and the school can make this work, I try to opt for this. This gives us more time as a family after school, and also avoids me pulling them out of school to attend.)

• Enter this time into Google calendar, along with any details that the therapist may request- skype details, books they will be using, apps, etc.

• Family calendar- write it on our family calendar so everyone can see

This system helps me stay on top of our hundreds of appointments every year. It not only keeps me turning up on time, but allows more head space for more important moments. And that for me is worth every second.