"My child falls through the gaps"

My child broke their finger and sustained an unstable fracture on their little finger, and was referred to the plastics department of Royal Perth Hospital (RPH). We visited the RPH twice earlier in the week, and stayed overnight the following night. My child is a Type 1 Diabetic, who is insulin dependent.

Last week, my child was scheduled to have an operation. As required, we followed the recommendations of fasting from the night before and arrived at the admissions waiting area very early in the morning on the day of the operation. We waited half an hour then were called up to admissions, I reiterated with the admissions staff that my child was Type 1 Diabetic. 

We were taken up to the day surgery ward on the 4th floor and allocated a room and their chair and space where my child would wait to be called up. My child was changed into a gown in preparation for surgery. By mid morning they had a drip put into their arm in preparation for the Insulin infusion. An hour later they were intravenously receiving glucose and insulin to maintain their blood sugar levels. It is important to know that because of fasting my child's blood sugar levels needed to be monitored to prevent them from going into hypoglycaemia. If a diabetic is hypoglycaemic, their levels have gone under 4 m/mol. This is serious as they can go into a hypoglycaemic coma.

By this stage I believe we had seen the anaesthetist, who we discussed my child's diabetes with. By now quite a few patients had come and gone in the room, when I questioned the communications person, they informed me that my child was not on a list but in a status called pending. Over the period I was there I did ask a few times about the surgical list, to find that my child's status was still pending.

My child's blood sugar was now dropping down. It went from 10.1 to 7.0 to 4.8. this was in a 2 hour period, however it was getting closer to dropping below 4, which meant it needed to be monitored frequently. I was becoming concerned at it dropping quite quickly. I expressed my concern to the nurse, who said they will check it in an hour. I said that is far too long, my child might have dropped too low, it will need to be sooner. The communications person came back as I expressed my concerns and about how long my child was having to wait, especially being diabetic. I was told they couldn't do anything about the surgical list and my child's status was pending still. I expressed my concerns about their levels being low and I didn't want them to drop even more. The communications person commented, well neither do we, which I felt was said in a sarcastic tone, to which I responded, that's good I'm pleased we are on the same page.

The nurse said they will be back in 30 minutes. 45 minutes later the nurse returned and did my child's blood to find he was now hypoglaecemic at 2.9. The time was 2.30pm. My child had been fasting for 17 hours. They stopped insulin and gave them glucose. I asked if they knew what to do if someone goes into a hypoglaecemic coma, they didn't reply. I asked again, the nurse said, call the doctor. I said you need to monitor my child closely. A few minutes later they tested my child and their levels went to 4.2. Then 15 minutes after they dropped again to 3.7. I said after 10 minutes can you check their bgl. They said every 15 minutes, I said can you check my child's levels now please it's 10 minutes and I'm worried. No response. The nurse who was about to leave as their shift was over, then proceeded to take my child's bgl, and thank goodness it had risen.

Prior to that the nurse had asked my child if they had felt symptoms, to which they responded no, due to the amount of time fasting, sitting for long periods and feeling quite weak. I explained that at home, they get very strong signals of being just on 4 or 3.9 where they wake, sweating and shaky, that is why this is so dangerous and they cannot feel this low coming on. I then requested to speak to the Manager of the floor or a doctor or anaesthetist. A new anaesthetist came to speak with me, which I mentioned my child's diabetes and their two hypoglycaemic incidents, and that now they had fasted for nearly 20 hours. The anaesthetist agreed that this shouldn't have happened and how my child's needs should've been a priority.

The Nurse Unit Manager then came and spoke to me. I expressed that this situation my child is in is appalling and should have never happened. How can they make a Type 1 Diabetic patient fast for 20 hours and not prioritise their operation. When the hospital is managing my child's diabetes by having them on the machine, why did they go into two hypoglaecemic states. The nurse had said they will be back in an hour, they also said they follow the guidelines for the Insulin Infusion Chart. I told them an hour was too long and as for the chart, its not one size fits all. My child's body is weak, they've had no food, they've been fasting for 20 hours, the nurse must cater to the client's needs and obviously the Insulin Infusion Chart is not working. I asked the Nurse Unit Manager if they were aware of my child's needs as a Type 1 Diabetic and how they are prioritised on the surgical list. They stated that they were not aware that my child had diabetes and therefore not advocated in terms of priority. I asked whose job it was to inform them?They said they had a meeting, the surgical team, and the Communication nurse had attended, but nothing changed. The communications nurse made assumptions that perhaps the right people knew about my child and their condition. This is a serious big mistake to assume that others know about patients, especially a patient they knew had type 1, that they had waited a long time and had been hypoglaecemic twice on their watch.

I called the Consumer Engagement person as well and told them about my experience and what my child had been going through. They said they could give me a client feedback form to fill out and to give it to them to send on. I advised them I could send it on myself, if they wanted a copy I could give them one. They then advised me that they will get the nurse manger to speak to me. I asked what about, they said to explain things to me as I was upset. I said there's nothing to explain, my child had already waited 20 hours, this was appalling. I asked who the nurse manager's boss is, to which they replied they didn't know. So I asked how many directors there are at the hospital, they explained the areas, I asked then who is in charge of the area I am in, they then mentioned the Nursing Director's name.  

Falling through the gaps summary:

My child's details and status should have been on the system, but wasn't until it was too late.

My child should have been a priority on the surgical schedule but they weren't and no one was advocating for them.

The Nurse Unit Manager wasn't aware they had a Type 1 Diabetic with specific needs on their ward.

The nurse acting in the communications position is failing to communicate with their own unit manager or at the surgical meetings. If they are not assertive enough to question or advocate, then they shouldn't be in those meetings.

Nurses need to know how to work with and monitor a client/patient with Type 1 Diabetes. Training on diabetes.

Guidelines can be useful but do not suit all patients. In these cases If nurses don't know something they need to get advice, or run it past someone.

Is there policies regarding patients with Type 1 Diabetes, in regards to prioritising them for surgery? Or are these only guidelines?

How are theatre lists composed and who does them?

What are nurses training in regards to Type 1 diabetes? Was this nurse new?

I felt traumatised and lost faith in the medical system.

I believe if I wasn't present my child may have died in a diabetic coma.

I hope no other parents or patients go through this.

I know other parents may not be able to advocate for themselves like I am able to, and what happens to them?

This could have been preventable. Where is the 1,000 day challenge RPH are promoting? To deliver what matters most? No patient harm? Deliver consistent high quality care? Culture of continuous improvement?