"Taxing, isolating and unsatisfying."

About: Princess Margaret Hospital for Children

(as a parent/guardian),

My baby was a planned admission to Princess Margaret Hospital. Certainly if there had been a choice, it would have been preferable to not have been an inpatient at all. However, my child required investigations and as a country patient, these could not be performed as outpatient/day procedures.

Our hospital experience began with disjointed pre-admission communication and ended with a vague - has the doctor seen you? …you can probably go then - without so much as a copy of our discharge summary (until I specifically requested one). There were so many events, too many to detail, which may not have been critical nor affected the eventual outcome of our treatment but did contribute to an overall experience that was more taxing, isolating and unsatisfying than it need have been.

I understand that PMH was and is well overdue to relocate to the new facility and the staff are probably working under less than ideal conditions. Yet, I still feel that for a booked admission, we were poorly accommodated. Mainly, I felt some of the staff (equally, some were excellent) were not particularly empathetic to the additional challenges regional patients encounter in accessing specialist health services. I had travelled alone (husband remained at work) with a baby, to a city where we had no family or support networks and for how long we didn’t know, with nothing but an admission date and the instruction to call on the morning of to confirm bed availability… it wasn’t as if I was just driving in from a few suburbs away.

Understandably, healthcare is a process of constant re-prioritisation and we came prepared to wait but I would have liked to have been kept better informed of the treatment plan and anticipated time-frames. Because my baby wasn’t acutely unwell, I didn’t demand attention & for the most part didn’t need any help, I felt completely overlooked, like we were wasting space or didn’t deserve to be there. At its worst, this resulted in an episode of ultimately unnecessary fasting of a young, exclusively breastfed-on-demand infant… a bit stressful for both of us. I accept that we were never on the list for the procedure that day but it demonstrated a fair degree of disregard for the mother & baby unit that this wasn’t clarified and communicated to me hours earlier.

A busy hospital ward is to be expected, but the atmosphere was closer to chaotic much of the time. I was brushed off when I asked, out of curiosity, what a particular test was looking for; other staff interrupted as one of the doctors was explaining something to me, so that she had to leave to attend to another matter and I never got to hear the rest; the ward clerk was dismissive the single time I approached the station…Then there was being prodded at 2 a.m. and told we were to be moved to a different room but before I had a chance to get up, some random night duty staff swiftly wheeled the hospital cot containing my baby out the door and left me to pack up our belongings and drag everything down the corridor alone. I wasn’t requiring exclusive private patient privileges or the Hilton… but we were put in noisy four-bed room and despite needing to get up to feed and resettle my baby several times a night – more than usual because of frequent disturbance by usual ward activity – I was offered a fold down bed, in a back corner of the room not even within sight of the cot. The only way I could be reasonably near was to sleep in a recliner. I understand due to infection control and other considerations room re-allocations are necessary, however, surely this reshuffling could have been handled better and perhaps occurred earlier in the evening in anticipation of needing to accommodate overnight admissions? I can’t blame individuals, they were doing what needed to be done and for a different patient/carer this may have been a non-issue but it is one example of something that, in my circumstances was significant.

I may have reacted differently to some of these situations if it were not such a tense, uncertain time. But then, is any person with the need to be in hospital ever going to be feeling anything but fragile? I think I am fairly resilient and able to reflect on the experience rationally but I do wonder how a similar experience could impact on the next person.

Positive mentions:

Cannot fault the medical expertise that we benefited from.

The wonderful ward volunteer – Sharon? – who took my baby in her stroller for a walk around the ward to allow me a bathroom visit and a coffee break; and the tea lady for caring whether I was fed!

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Responses

Response from Michelle Dillon, Executive Director Princess Margaret Hospital, Child and Adolescent Health Service - WA

picture of Michelle Dillon

Dear Observer

Thank you very much for providing such well-articulated and considered feedback about your recent experience with us. We obviously enjoy receiving compliments but your insights into how we can do better, are exactly why we joined Patient Opinion.

There is a strong connection between the experience that patients and families have in hospital and the overall quality of care they receive. There are several aspects of your feedback that echo other comments that we have received through our family surveys. Those surveys have demonstrated that 76% of our patients and families rate their overall experience as good or very good. This suggests that while some people are having a great experience, we sometimes have difficulty delivering a good experience consistently.

Your feedback and comments that we have received from other patients and families demonstrate that there are three areas where we need to improve. These are: how we meet the emotional needs of patients and families; how we seek to understand the individual needs of patients and families; and how we respond when there are concerns or complaints. These themes are key priorities for us and we will be working with our individual teams over the next year to ensure that patients and families have a positive experience, each and every time.

The CAHS Chief Executive, Professor Frank Daly, has read your feedback and is very grateful that you have taken the time to write to us about your experiences at PMH. Professor Daly is passionate about improving the patient and family experience, and the feedback that we receive through Patient Opinion is a key mechanism through which we can improve services.

We are committed to providing feedback to the team that was directly involved the patient's care. We would appreciate it if you could get in touch and provide further details about your experience including the ward you were on. This will enable us to work with that team to ensure that we improve our service.

Thank you once again for providing us with such valuable insight into our service.

Yours sincerely

Michelle Dillon

Executive Director

Princess Margaret Hospital for Children

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Response from Amanda Magraith, Chair, Consumer Advisory Council, Child and Adolescent Health Service - WA

Dear Observer

Thank you so much for sharing your recent experience at PMH.

I am reaching out to you as Chair of the Consumer Advisory Council (CAC) for the Child and Adolescent Health service (CAHS). The CAC is a consumer group that has a formal partnership with the CAHS leadership group. Our purpose is to ensure the consumer voice is heard, acknowledged and valued across the health service. We work with CAHS to develop and maintain excellence in patient/client and family-centered care.

Your letter was beautifully written and it has brought into focus very important issues within the hospital that the CAC has been discussing lately. The issues you have raised surrounding staff empathy, communication and patient-centred care are a major focus of the CAC and we hope to improve them by working with the Health Service Executive and hospital staff. While acknowledging that many staff work tirelessly and provide a wonderful clinical service, patient-centred care can be inconsistent and this is something the health service needs to improve. Your letter has drawn attention to very significant issues and we hope it will be a catalyst for change.

I would very much like to ask you if you would be interested in becoming part of a larger consumer group that hopes to help effect change and improve the experience of all health consumers. If you would like more information, please contact me via the Child and Family Engagement Service at: cahsconsumerandyouthcouncil@health.wa.gov.au

Again, I would like to thank you for providing your feedback and wish you and your family all the very best.

Kind regards

Amanda

Chair, Consumer Advisory Council

Child and Adolescent Health Service

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Update posted by Observer (a parent/guardian)

I found delivering negative feedback to be an uncomfortable task, as it was difficult to reconcile my sense of gratitude for the excellent standard of healthcare we have available to us in Australia with my criticisms of certain aspects of it.

So thank you Michelle & Amanda for being receptive to my comments, I appreciate your response and I am glad my insights can be used constructively to initiate improvements, so that little remains to detract from the largely excellent work of our healthcare facilities.

Would the most appropriate channel to convey further details regarding the experience and the ward in question be via the CAC?

Response from Michelle Dillon, Executive Director Princess Margaret Hospital, Child and Adolescent Health Service - WA

picture of Michelle Dillon

Dear Observer

Thank you for your additional comments.

We understand that providing feedback can be an uncomfortable process. We have learned that some families worry that if they appear critical then sometime in the future hospital staff may behave differently towards them, perhaps even unconsciously. Patient Opinion allows the initial conversations to occur in a confidential and safe manner while trust is established.

If you still feel comfortable providing more direct feedback you can do so in two ways. Firstly, by all means contact my office directly on 9340 7921 or at Michelle.Dillon2@health.wa.gov.au. Alternatively, you could write to Amanda Magraith, as Chair of the CAC, at YouthAdvisoryCouncil.CAHSconsumer@health.wa.gov.au.

Kind regards

Michelle Dillon

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