"Frustrated Family - referrals and wait lists - how to access help quickly"

About: Bunbury / Harvey / Leschenault Community Health Service Princess Margaret Hospital for Children / Emergency Department St John of God Bunbury Hospital

(as a relative),

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?

Responses

Response from Jenny Hoskins, Community Health Manager , Naturaliste, WACHS - South West

Dear Worried Relative

Thank you for posting the story about your families experience with the Community Health Service. We value receiving feedback about our service as this helps us to improve.

I am very sorry to read of the distress your relative is currently going through with their toddler and I would like to encourage them to contact me on 9753 6440, so that I discuss the issues and provide them with support to ensure the best outcome for their child.

I would like to take this opportunity to respond to the questions you have asked and let you know that our Child Health services are generally delivered face to face, particularly physical examinations. I am surprised to hear that there was a request to provide information relating to a child’s assessment via text message. SMS is only used for appointment reminders and confirmations and to deliver generic information. I will follow up with our child health and child development teams to ensure any inappropriate use of text messaging is immediately stopped.

We have a multi-disciplinary Child Development Service including a Paediatrician who can support families with concerns and if your relative is able to contact us, we will ensure supports are put in place while waiting further assessments.

Community Health do not generally have emergency time slots because most services are planned appointments. Our Child Development Service model is that we make contact as soon as possible after receiving a referral and talk through concerns with parents so we can determine how urgently the child needs to be seen. Wait times to see our audiologist have been up to 3-4 months because we’ve had an influx of referrals coming in from across the region. We closely monitor these wait times and when we need to, we supplement our services to bring current wait times down to around 6-8 weeks.

I am unable to comment on neurology services and the wait times as WA Country Health Service South West does not offer this within the region. When we speak, I may be able to assist you regarding best way to access the service of concern.

Unfortunately I am not clear exactly what service you wish to access as an emergency treatment but if emergency services are required, the family can present to Bunbury Hospital Emergency Department and an on call Paediatrician is always available to assess any concerns of an urgent nature.

Once again I am very sorry that you feel let down by Community Health Services and hope that your relative will be in touch as soon as possible so we can provide support as quickly as possible.

Jenny Hoskins

A/Director Population Health

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Response from Barbara King, Director of Medicine, Princess Margaret Hospital, Child and Adolescent Health Service - WA

picture of Barbara King

Dear Worried Relative,

Thank you for taking the time to post this comprehensive feedback in relation to the care provided to your relative at Princess Margaret Hospital for Children (PMH).

I appreciate your concern; however, without further information, we cannot look into the specifics of this situation. As such, I encourage you and your family to contact the Child and Family Engagement Service (CaFES) so this can be investigated appropriately. The CaFES team is available on 9340 8315 or via PMHCLS@health.wa.gov.au. PMH takes this feedback very seriously, so I hope you will be in touch so we can review the events that have occurred to date and try to resolve this matter.

In response to your query regarding PMH waiting periods, the waiting period will depend on how your relative’s referral is triaged. The next available booking for a Neurology Category 1 referral is in October, and our current wait time for Category 2 referrals is approximately 12 months.

Thank you again for your comments. PMH values honest feedback to help us improve our services and the care we provide to our patients.

Kind regards

Dr Barbara King

Acting Executive Director

Princess Margaret Hospital for Children

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Update posted by Worried Relative (a relative)

I thank you for posting our story, and provide this response as written by my relative.

With regard to the "Child Health Services", a face to face appointment was made & carried out, along with a physical examination of my child. Due to our appointment being before Christmas, the lady I saw at Hudson Road, said she would be finishing up & wasn't sure who would be taking over, or if there still would be someone taking over her role & that I could message her a picture of my child's head (a before & after shot) & send to her to let me know if it had improved or remained the same & to seek further treatment.

Very recently I called Paediatrician's rooms, I was referred to by the ENT Specialist, as it has been nearly 3 weeks & still no phone call to make an appointment time. The receptionist at the Paediatrician's rooms said she had not received a referral fax from the ENT Specialist. So I phoned the ENT Specialist's rooms at SJOGH & requested the referral to be faxed. The ENT's rooms stated they had faxed the referral through to the Paediatrician's rooms, so I phoned the Paediatrician's rooms again & stated what I had been told & requested the Paediatrician's rooms call me to confirm they had received the referral fax this time. I am still awaiting that phone call at this stage & I have recently phoned again.

I have also recently spoken with the Audiologist at Hudson Road & have made an appointment soon for a group of specialists (Occupational Therapist, Speech Therapist, Physiotherapist) at Hudson Road to assess my child, but that's the earliest I could be seen & as for the hearing examination, I have been put on a waiting list and I won't hear anything further for a couple of months, which in my opinion is absolutely ridiculous, as my child's case is EXTREMELY URGENT & my heart is breaking every minute of the day, watching my child just get progressively worse.

There is no point in me seeking medical advice from the Bunbury Hospital Emergency, as I feel I will be treated the same way as I was at PMH - which is meant to be a professional & experienced hospital. No referral was faxed to the Paediatrician's rooms from the Paediatrician I recently saw at PMH with notes of the assessment she made, once we were finally seen to that day!

I have attempted to contact the number you provided me along with your mobile number, to further discuss, however, I got answering machines on both. This matter is URGENT, so please could someone respond back to me as soon as possible as I feel like I'm being constantly fobbed off & no one wants to help me or most importantly my baby who is in terrible pain!!!

Response from Jenny Hoskins, Community Health Manager , Naturaliste, WACHS - South West

Dear Worried Relative

Thank you for contacting me on Tuesday to discuss and address your concerns. I hope that our conversation has assisted in providing further information on accessing Child Development Services at Hudson Road.

Confirmed appointments have been offered with the multidisciplinary Child Development team, including a developmental paediatric assessment, to assess and provide support around your child’s development.

I have spoken to the Head of Department Paediatrics regarding the private paediatrician referral and difficulties you are having. It is recommended that you present to Bunbury Hospital Emergency Department, during office hours Monday to Friday, as we discussed, and the on call Paediatrician or Head of Department Paediatrics will be able to assess/assist with concerns of an urgent medical nature.

Thank you again for your comments and for working with us to improve the situation. We value feedback to help us improve our client services

Kind Regards

Jenny Hoskins

A/Director Population Health

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