"Frustrated Family - referrals and wait lists - how to access help quickly"
About: Bunbury / Harvey / Leschenault Community Health Service Bunbury / Harvey / Leschenault Community Health Service Bunbury 6230 Princess Margaret Hospital for Children / Emergency Department Princess Margaret Hospital for Children Emergency Department Subiaco 6008 St John of God Bunbury Hospital St John of God Bunbury Hospital Bunbury 6230
Posted by Worried Relative (as ),
I am the relative of a toddler and wish to share the family’s recent ongoing experience.
An assessment was made by the community child health services in Bunbury when the child was 8 months old. Due to a change in staffing, the mother was notified by text message and asked to send the service a photo of her child’s head. The mother received a text message advising her that her child did not need a helmet. No phone call and no physical assessment occurred. How can this be in the best interest of the child? Over the last few months, the child's grandmother and mother have identified the child has become increasingly deaf. The child has also stopped speaking and is obviously experiencing pain in their head. The mother sits in a chair at night with the child, so they can sleep upright, to help alleviate their obvious pain. The child tends to hold their hands over their ears and shakes their head, or bangs their head on the floor or walls. The child did not walk until 14 months of age due to problems with balance.
Recently the mother went to her GP where a referral was then made to an ENT Specialist at St John of God Hospital Bunbury for assessment for grommets. Prior to this visit the mother attended a walk-in doctor’s clinic on three occasions for prescription of Amoxicillin. The ENT Specialist said that grommets will not assist as the problem could be due to a blockage in the tubes behind the ears and the child will need further assessing at Hudson Road using their hearing equipment. The ENT Specialist's equipment is designed for older children not babies and a possible assessment by a Neurologist. A referral was then provided to Hudson Road by him.
Information provided by the community health service was that if the mother sourced a Neurologist herself, then this would speed up accessing treatment for her child. She did this and a referral by the ENT Specialist was made to a Neurologist in Perth. As the Neurologist also works at PMH (Princess Margaret Hospital) it was advised by a staff member of his private practice, that the mother should present to PMH Emergency Department, as it was understood that all the necessary referrals were in place to access treatment / MRI for her child. The mother and child attended PMH ED and was told by the doctor that a referral would be made back to Bunbury to a Paediatrician to assess and determine the necessity of an MRI. The family has been advised to wait for contact from the Paediatrician’s rooms. (A referral will be faxed to the Paediatrician from PMH.) It was advised that it may take several months to be seen, although PMH will advise the appointment be ‘sooner rather than later’. Needless to say the family is frustrated and angry as they have done everything they have been told to try and get some immediate help for their child.
I believe the ENT Specialist has identified that there is a build-up of fluid behind the child’s ear, and continues to build up around their brain because of damage / blockage to the tubes possible causal factor being the shape (flatness) of their skull.
The family are extremely upset and feel that the community child health service has let them down. Does no-one see the urgency required in this situation? How bad does it need to be? What about long-term effects on their child? Permanent deafness or brain damage?
What service does an assessment via text message? Had this been picked up at the 8 month appointment their child could have been wearing a helmet to re-shape their skull and possibly avoid much of the pain and deafness they are experiencing.
The family want to know:
· Why the community child health service did not do a formal physical examination of their child when they was 8-months old? Is it normal to be assessed by text message?
· What assistance and support can be provided to help the family now while they await further assessment?
· Are there any emergency appointments at community health service? Advised by the community health service that a Hearing Assessment appointment is a 3 – 4 month wait list – Is this usual?
· How soon can the child be reviewed by the Neurologist? What are actual wait-list times?
· How do you access emergency treatment in the South West region for this type of problem?