"Admission to RPH"

About: Princess Margaret Hospital for Children Royal Perth Hospital

(as a parent/guardian),

My teenage daughter was referred from PMH to RPH for a feeding peg to be inserted, where she has been receiving regular services and care since she was a baby. She has cerebral palsy and is very small for her age. The wait time for the initial consult was very small and the actual clinic wait was non-existent, which was very impressive. The surgery was booked and again the wait was very short - again very impressive. The surgeon was very nice and the staff excellent, along with the nursing and allied health care overnight - including education on using the tube which was exceptional. Very thoughtful accommodation was made for me once they realised I was staying in with her, well above what I had expected and it was very appreciated.

However a week later my daughter became extremely unwell and I called the ward nurse who had looked after her the week before and discussed her symptoms and she recommended I call the dial a doctor and if still concerned to bring her back in via ED. I did this and the doctor recommended I call an ambulance immediately and she was brought back to RPH.

It quickly became obvious she was very unwell and she was moved to the Critical Care Unit in the ED and scans and consults happened during the night to try to find out what was going on. The care she received in ED was amazing, the thoughtful actions of the nurses in relation to my distress and fear was empathetic and I can't speak highly enough of them. It was discovered that during the surgery to insert the peg the surgeon had gone through her colon and she would have to have surgery to resection her bowel and repair the damage which was done early the next morning.

She then spent a number of days in ICU and was moved when stable to a ward. The original surgeon came to see us in ICU after the repair surgery and was very open and sincerely sorry for what had happened, and we remain very appreciative of his honesty and caring. It can't have been an easy thing to do, and I am absolutely sure that he will only learn from this and become an even better surgeon in the future and we wish him the best.

The staff in the ICU and on the ward were wonderful, as was the general surgery team who were responsible for her clinical care. She was released but unfortunately a few days later was back via ambulance to ED and back to the CC unit (with some of the same staff) and although not as sick this time, obviously there was still something wrong. She again spent time in ICU and was moved back to the ward after some days and slowly recovered and was released again. She will be back for a reinsertion of the peg soon.

While the care was excellent despite the situation, there was some clear issues that I think the hospital has to address for the future care of patients like my daughter. The knowledge of cerebral palsy, which is a very common disability, seems to be lacking in RPH. The treatment for things like muscle spasms and the pain and distress that causes at RPH is very different from what she has received at PMH, and caused unnecessary suffering to a child who was already suffering enough.

Her size is not the regular size of a person her age and I believe that caused some concern clinically as there was no paediatric sized equipment readily available from what I could see. She is the size of a child half her age and it wasn't like this wasn't known from the first consultation. No calls were made to or consulting was done with her very long term treating paediatricians at PMH, and I think this would have been very helpful when dealing with a person presenting as she does. I do think that more work needs to be done when receiving long term PMH patients to adult services - a responsibility of both RPH and PMH. Certainly the post op treatment of a person with her level of CP needs to be consistent with what she would have got and had gotten from PMH and led by knowledge of that particular disability. The staff, surgeons, nurses, allied health - you should be proud and thankful to have such staff work there, they are wonderful, truly.

Responses

Response from Aresh Anwar, Executive Director, Royal Perth Bentley Group We are preparing to make a change

picture of Aresh Anwar

Dear anamenotchosen,

Thank you very much for taking the time to share your experience especially during what must have been a very traumatic time for you and your family.

Thank you for the positive feedback but you have quite rightly highlighted an area of concern that we are currently in the process of addressing. We have had similar feedback from our Consumer Advisory Committee who have also highlighted the need to improve the transition of patients from paediatric to adult services. Senior staff at RPH are currently working with consumers to develop a plan for the transition of paediatric patients to not only improve the communication lines between RPH and PMH, but to prepare parents, carers and their families for the move from paediatric services to adult services. A strong focus to date has been on the review of out-patients but your experience clearly highlights the need to expedite a review of our in-patients. We will also take into consideration the availability of equipment for youth/smaller sized patients at our hospital.

I thank you again for taking the time to contact me and I hope your daughter’s health is improving. I will feedback in due course on the changes we have made.

With kind regards

Dr Aresh Anwar

Executive Director

Royal Perth Bentley Group

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Response from Susan Slack, Coordinator of Nursing, Education, Research and Patient Flow Unit, Child and Adolescent Health Service - WA

Dear anamenotchosen,

Thank you very much for taking the time to post such a detailed account of your daughter’s recent hospital experiences. Your feedback is extremely valuable to us.

I agree with you that more work needs to be done in how young people are transitioned to adult health care services, particularly when a young person has chronic or long term health care needs.

One of the challenging aspects around transition is that there is not one single solution to ensure a seamless transition. While some cohorts of young people make a smooth transition and have a clearly defined pathway to equivalent adult health services, other patient cohorts have a far more challenging experience.

PMH currently has a team of people who are working with a number of clinical specialties and tertiary adult hospitals to look at transition strategies and identifying service gaps with the management of new patients. We would welcome your involvement in co-designing services with us so that we can best meet the needs of patients and their families and carers. If you would like to be involved, please feel free to contact me directly at Susan.Slack@health.wa.gov.au or on 9340 7044.

PMH takes all feedback very seriously, and we are grateful for honest feedback to help us continue to improve.

With best wishes for you and your daughter.

Kind regards

Sue Slack
Coordinator of Nursing
Education, Research and Patient Flow Unit

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

picture of Michelle Dillon

Dear anamenotchosen,

Thank you for your post. I agree with Sue’s comments that transitioning our patients and their families to adult services is an area where we can improve. We are working on this currently, and I encourage you to contact Sue directly so we can learn from your family’s experiences and work at providing the best possible hospital experiences for our patients and their families.

With warm regards

Michelle Dillon
Executive Director
Princess Margaret Hospital

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Update posted by anamenotchosen (a parent/guardian)

Thank you all for your responses. I have contacted as requested and I understand PMH is doing some work around the transition to Adult Services.

I am interested in what RPH is doing around this issue, I have contacted Customer Liaison but have not had a reply. Are there any updates to the concerns you raised in your response to my story?

Many thanks

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