"Care my child received"

We presented to PCH twice at the end of last year, once via ambulance, the second at our GP’s insistence (including letter from GP). Suffering seizures and fainting, my teenage child with a complex history of Eating Disorder – Anorexia nervosa, PTSD and anxiety and a previous admission in the weeks beforehand, the first night we presented we only had limited observations done: no blood test and a lie-to-stand BP observation was refused, even after request and explanation that my child had high postural hypertension. We were discharged after 6 hours.

After my GP observed an absent seizure in their office the following afternoon, they wrote an extensive letter asking for a proper investigation to be conducted with the view to admit my child for investigation/management of increased syncopal episodes, extreme dizziness and possible seizure activity.

Upon presentation, we waited for 3 hours for the first set of observations to be done, other than a very painful cannula placed and blood taken, after that we:

-    Had the nurse call button on for over an hour, so I eventually approached a nurse regarding the numb fingers my child was experiencing from the cannula insertion. The nurse told my child, from the door, that they can be painful and there was no way to make it more comfortable. The nurse did not come and inspect the site or address the numb fingers.

-    While my child had their observations done, they fainted from a lie-to-stand BP. Their pulse rose to over 145, for over 30 seconds. I believe the machine flashed with ‘tachycardia’.

-    As my child was coming out of the faint, they were very disorientated, and the nurse took their BSL without permission or informing myself or my child that they were taking blood. My child has PTSD and anxiety which I explicitly told every nurse who came in contact with my child, and this procedure gave my child a panic attack that I had to then manage.

-    The doctor returned to tell us that we were not going to be admitted for further investigation. When questioned about the postural drop and tachycardia (both part of the PCH admission criteria as of 26 November 2020), the doctor excused themselves and returned with the Emergency Department Consultant.

-    The ED consultant did not give their name when they entered our room and proceeded to inform us that we would not be admitted due to having significant community support. This consisted of an ongoing GP, a psychologist, and psychiatrist (who we had a tentative appointment scheduled early last year). I felt the consultant was deliberately obtuse about the care in the community that we actually had when I tried to clarify the reality of the situation.

-    When asked about how to keep my child safe while having extensive fainting spells and falls, after having already had one head injury last year, they shrugged.

-    When pressed about the tachycardia and seizures, they again shrugged and said that they did not see them to be a problem.

-    When asked about my child's persistent weight loss, despite sticking to their eating plan and increasingly deteriorating health, the consultant told us that my child does not have Anorexia. That they have seen anorexic children, and in my opinion, my child doesn’t have it. This is despite PCH’s own staff psychiatrists (2 in fact), psychologist and dietician reviewing my child last year and confirming the Swan Centre’s diagnosis.

-    When told that that statement was extremely unhelpful, I believe they shrugged once more.

-    When I asked if the only way my child would be admitted again was if they sustained another head trauma, they replied, yes.

-    The ED Consultant then said this is not up for debate, goodbye, and promptly left.

-    I must admit, I did call out a sarcastic, thanks for your help, as they left. By this stage, I felt upset and defeated, and the situation got the best of me.

After our dismissal, my child went on to experience 4 hours of seizures (on and off) two nights later. We requested the ambulance take us to another hospital instead of PCH because my child had another panic attack, on top of their episodes, at the thought of presenting to PCH again. We knew we would probably only go to be observed and receive no extra help, but the thought of returning to PCH was galling.

In my opinion, my child was gaslighted, ignored and summarily dismissed by every staff member at the ED over the two nights they were at PCH. I experienced the attitude of a hysterical parent when I opened my notebook to recall from the extensive notes from the doctor’s appointments and dietary notes I had been keeping. For example, when I wrote down my child’s QTc numbers, one nurse literally sneered at me.

My child has experienced ongoing nightmares and disrupted sleep from their treatment of PCH. My parents live near PCH and now we have to drive a different route, so we do not have to drive past the hospital: both of us experience extreme anxiety at the sight of the hospital. My child physically shakes when I tell them that because of their age, they will most likely have to present to PCH again because of their complex health situation. I believe they cover their fear with morbid jokes like they'll make sure they bash their head next time they faint so they take me seriously.

This followed the complete lack of follow up care from their admission late last year, despite assurances that we would leave the hospital with information on support and a care plan for follow up. My GP never received my child’s discharge summary or any other information regarding their admission – despite being told that it would be provided.

Unfortunately, this does not seem to be an isolated incident – I believe those who present to PCH with complex health needs are treated the same way. In my opinion, there seems to be a consistent disconnection between the espoused values of the hospital and the actual care received: little empathy, huge power imbalance and loss of agency.