"Non-diagnosis"

About: Princess Margaret Hospital for Children

(as a parent/guardian),

We have visited Princess Margaret Hospital (PMH) for over 3 years in an attempt to get medical assistance for my child. We think my child may have a rare issue that requires specialist advice but we are continually dismissed - 'lost' in the system and my child is denied access. My child is too sick to function normally and too well for the hospital to offer assistance.

We have presented in emergency several times and have been admitted once for a longer stay and had out patient care.

We are still struggling to be taken seriously. I have lodged a complaint, but after doing my own research the likelihood of a parent continually presenting to a hospital over several visits for the same complaint and it being taken seriously is almost zero.

If I research and use medical terminology in an attempt to understand my child's issue, as nobody else is, I am flagged.

If I get emotional, I am flagged.

If I don't do anything, my child gets chronically ill.

I need a referral to a specialist in genetics or metabolism and I cannot get one without evidence. I cannot get evidence without seeing the PMH specialists. There are no private specialists that can assist us in WA. This will be the second time we will are being forced to use medical services in other states just to be able to get help for my child.

It's taken so long, as the research and information we are using is from Google. We are having to do it ourselves. I am not a doctor or a nurse and it should not be this way.

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Responses

Response from Patient Opinion Australia

This response has been posted by Patient Opinion on behalf of the Child and Adolescent Health Service.

Dear Angry Mum,

Thank you for getting in touch, and please accept our apology for the delay in responding to you.

I can hear the distress and frustration in your letter and I’m sorry that you feel your concerns about your child’s health are being dismissed, and that the only available medical assistance is interstate. Our dedicated staff are here to provide your child with evidence-based best practice care of the highest level. If preliminary examinations did not indicate further testing is required, this may account for why your child has not been referred for further investigations. However, without knowing your child’s details, we aren’t able to look into this matter further for you. I encourage you to contact the Executive Director PMH on 9340 8302 or via PMH.Executive@health.wa.gov.au so we can review this situation and speak to you directly.

Please be assured all complaints are taken seriously, and I hope you will make contact with us so we can review this situation.

I sincerely wish you and your family all the best.

Kind regards,

Prof Frank Daly

Chief Executive, Child and Adolescent Health Service

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