"Mixed staff attitude to Diabetes patient"

About: The Royal Children's Hospital Melbourne

(as a parent/guardian),

We arrived at The Royal Children’s Hospital Melbourne (RCH) in the early hours of the morning recently. Upon arrival, we witnessed a conversation between your hospital health service with the ambulance crew querying why another hospital has sent the patient to RCH. Whilst we understand that services have their relationships, this was not appropriate in front of us especially with the child present. RCH staff perception of the other hospital being incompetent is not a conversation that a family should witness.

Upon admission into the Emergency Department (ED), we felt that some of the staff were not friendly or compassionate. In particular, the nurse allocated to look after our child was not compassionate and their bedside manner was not what one would expect when accessing treatment from a hospital. The nurse incurred an error and administered the wrong amount of potassium. We were not informed of this error at this time however were advised of the error later by the nurse practitioner during the day shift. We appreciated this open disclosure and commend the nurse practitioner for their courage to do this. In addition, this particular (allocated) nurse struggled to adequately administer IV fluid through the cannula (a common occurrence in health however how this was handled was disappointing).

My child was in a lot of pain and their arm was swelling due the fluid going into the tissue. When my child informed the nurse of the pain and that their arm was swelling they were informed to look away from the arm. Our child resorted to calling us at home to let us know that they were in pain and was feeling unheard. It was only after I called the ED that my child was attended to. Indeed, the drip was administering to tissue and my child’s arm was extremely swollen.

My spouse and I arrived for a visit in the morning and as we were there, clinicians frequently entering the room did not even acknowledge us or speak to us. We, being nurses, understand that ED is a busy work environment however we are also aware of the need to have good communication and person-centered approach.

My spouse and I understand the stress and demands of working in a hospital but when you are working with young people and anyone for that matter, the aim is to help the patient feel safe, valued and, with the autoimmune disease diagnosis specifically,  we want to ensure that our child can independently have help-seeking behaviours and trust that when they are struggling with managing, they can get help because this Type 1 Diabetes is not going anywhere anytime soon.

By this time my child was asking me why the hospital didn’t want them there? Is it something I have done? How come they are not kind? I explained the pressures of this type of work environment but I shouldn’t have to. We were not there as clinicians but patients or consumers of a service that we have a right to and that we contribute through taxes and health insurance. The allocated nurse was professional and supportive towards our child and we are appreciative of this.

We were transferred to the children’s ward 'Kelpie'. On our way to the ward, the transferring Operation Officer did not greet or even acknowledge that they were working with a teenager that was in pain and extremely anxious. This is not appropriate.

The nursing team at Kelpie was much friendlier and helpful for my child. They explained what was occurring and what the plan was. They were attentive to my child’s needs.

When we were reviewed by the treating doctors, we encountered difficulties again. I feel that the doctor was rather condescending and was unable to regulate their frustration over the presentation. Whilst I understand as a clinician that patients don’t always follow the rules, I know that I persist with educating and supporting in a regulated manner. If this had been the 10th presentation over a short period of time, I would understand but this was our first time. Having teenagers with Type 1 diabetes is complex and challenging. We have two kids with the autoimmune disease and no matter how hard you try (especially as they transition to better personal agency) sometimes things still go pear-shaped. I understand the doctor’s frustration but that should be something they discuss in supervision, not with us.

We did not like the doctor’s approach at all. We recommended that a review of insulin ratios occur however they were not keen. They appeared to coerce discharge upon us despite our child’s blood glucose levels (BGL) still being quite inexplicably high. Although the risk of harm was not imminent, it is good practice to address the high levels in a juvenile especially since an appointment with the Endocrine Team was not yet established.

The after-hours doctor was also keen to discharge despite our concerns. My spouse and child at this point were feeling unvalued and were keen to go home, not because they felt that everything was ok but because they felt vulnerable and suspected that they were being considered the problem family. I, however, felt that we needed to change the carb ratio to address the high BGLs that we were seeing.

The doctor implied that our being nurses should mean that we have a good understanding of the illness and how to help our child. Where ever can a doctor treat their own family? Is the doctor not aware that when one’s emotions are involved the situation changes hence the advice mostly is to get help from designated professionals other than you?Please rest assured that if it was easy all the time we would be doing it. It is not fun trying to raise a family whilst one is in hospital. No family enjoys spending hours in the hospital.

Throughout advocating for my child, I could see that the team were not specialist endocrine clinicians. I understand and respect this however a simple: I don’t really know as this is not my area of specialty, would have sufficed. Given that we had overted our status as nurses, they ought to have realised that we would understand this. However, there was so much back and forth over the issues, with the treating doctors seeming to have an agenda that did not acknowledge my concerns, whether they agreed with them or not. In the end, we were supported and are thankful for this however it felt superficial in our opinion.

My spouse and I discussed some of these concerns with the shift leader on the Thursday afternoon. The shift leader was very supportive and reassuring and helpful. We did highlight to them however, that we are aware that whatever uncomfortable experience you have with us is vented and debriefed in a supportive environment and that our child is not privy to these supportive and debriefing conversations.

We also highlighted that as informed parents we are able to address these issues confidently, but it is disappointing to think what other families with limited insight and that are anxious are being put through. Families requesting help are experts in their lived experience whether clinicians agree or not. It would do the organisation well to remind clinicians of this.

Thankfully we have had very good experiences with the Endocrine Team at other hospitals. RCH has partly disappointed, however at least it will not define what healthcare is offered in Australia or Melbourne. We had some really professional clinicians work with our child and for this, we are thankful and rightfully acknowledge.