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Ongoing lack of care, complex medical Neuro

Posted By saturncd49

"Ongoing lack of care, complex medical Neuro"

About: Perth Children's Hospital / Neuroscience and Neurology

(as a parent/guardian),

I have previously told a story about my experience which can be read here. 

I have contacted the Cahsfeedback service to make a formal complaint. It included that I think its been almost 2yrs since seeing my child's Neuro Dr and that I had to pester and put in a complaint about getting MRI results. These results, which were over 8 months old, showed narrowing of the artery had accrued again and to me, it appears no one's interested.

My complaint initiated another MRI which did not show that much more progression, so in my opinion, they think they are justified.

I think you guys dodged a bullet of pure negligence. Also now that 4 times, my child's 2-night sleep study has been cancelled once due to them being ill. This is being carried out due to increased seizures and stop-breathing episodes. Response is that I've had is to wake my child up and take them to ED when and if it happens. This study you will, in my opinion, most probably ignore anyway so I wonder what's the point.

I love the way the team at feedback always say sorry you find this distressing, I feel it is patronising which is all, in my opinion, they seem to accomplish.

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Responses

Response from Tim Jones, Co-Director Medicine, Child and Adolescent Health Service - WA 2 years ago
Tim Jones
Co-Director Medicine,
Child and Adolescent Health Service - WA

Head of Department

Submitted on 30/11/2021 at 3:47 PM
Published on Care Opinion at 3:49 PM

Dear saturncd49,

Thank you for taking the time to share your feedback about you and your child’s experience at Perth Children’s Hospital (PCH).

I am very sorry to hear of the delay you have encountered in obtaining your child’s MRI results, and for the unnecessary distress it has caused you and your family. The Neurology Department should have communicated the outcome of these results to you in a timely manner and I sincerely apologise this was not the case.

I further apologise that your child’s electroencephalogram (EEG) was cancelled as I understand once due to your child being ill, and further impacted by limited bed availability on three additional occasions at our hospital.

We are obligated to prioritise those patients with emergency or life-threatening illnesses in the first instance, and I am advised in your child’s case due to several complex trauma cases being received unexpectedly our staff were required to make the difficult decision to reschedule booked admissions for a number of families like yours.

I do acknowledge how extremely frustrating and tedious this must be for you and your child having to have their EEG procedure rescheduled several times because of such circumstances. Again, I am terribly sorry for this.

Should you wish to receive more in-depth details of your child’s case, I would encourage you to contact the Consumer Engagement team on (08) 6456 0032 or at CAHSFeedback@health.wa.gov.au. We can then provide you with the specific details of your child’s case and elaborate on any concerns you may have.

Thank you again for sharing your feedback, and I wish you and your family much health and happiness in the future.

Yours sincerely,

Professor Tim Jones

Co-Director – Medicine

Perth Children’s Hospital

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