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Lack of follow up and responsibility

Posted By saturncd49

"Lack of follow up and responsibility"

About: Oncology and Haematology Department / Oncology and Haematology Outpatient and Same Day Care – Clinic H Perth Children's Hospital / Dental - Outpatient Clinic C

(as a service user),

My child had a Dental appointment scheduled for this month and on another date a Haematology appointment.

I called the liaisons nurse to re-arrange the Haematology for the same day as the dental. They checked there was a clinic that day and that my child's treating Dr would be there too, this is due to the complexities of my child's history.

The nurse confirmed all and made the appointment.

On the day, we waited for dental and after a while was called in to a room. We met a new Dentist that we've never seen before, wasn't a problem. They did a quick check and after confirming everything was ok, said that now my child is an adolescent, they discharged.

After asking where to next I was given a small flyer with all private dentist and then subsequently told that none of them could do my child.

I said so where are we supposed to go then?

They wrote on the back a name of someone who does special needs.

I said my child is under the complex care and this transition to adult.

I was informed it is not the case with dental.

They said that they mentioned it at last appointment along with another hospital but I had said we would discuss this at a later one, due to Covid this was a quick in and out.

I thought how crap is this, the empathy really shows.

So afterwards we went to the next appointment Haematology, well we sat and waited and waited so we were the last ones to be called by a Dr who I never seen before!

I said who are you? they replied I'm a new Dr here.

I asked where's my child's treating DR? the reply was they had the day off!

I replied that we rearranged the appointment specifically for this day and also travelled over an hour and have to arrange extra support to help with hospital appointments.

I didn't get much response, another Dr started to comment from behind about them being away.

I was so fuming that we just left. I felt it was a complete lack of time for both appointments.

We had this happen before and when we questioned the Dr had no clue about what to do and what was next and no idea, so from that appointment onwards we were told it would always be my child's treating DR from now on. You only see them once a year, we always get the feeling my child is an embarrassment to that clinic as they caused this mess in the first place with their lack of care.

My child's spine, lack of follow up from complex clinic. In my opinion, this department is a tea party without a cup of tea. It took my community provider to flag their spine issues with this team, something that, I feel, this team should have been keeping an eye on but last checked 3yrs ago.

There's still request from the last appointment that nothing's happened again.

We also had dramas over my child's infusa port which suddenly blocked recently on afternoon infusion. That whole saga was a complete disgrace, in my opinion, to get the operation to replace it. I felt the lack of communication completely ignorant of our requests until the Anaesthetist called to go through pre-op, which I replied news to us that no one spoke to us at all and that they better go and speak to the team pretty quick.

In my opinion, you don't do complex medical at all well, there's constant lack of communication and understanding that I feel it's easier to brush them away.

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Responses

Response from Linda Hop, Acting Nurse Co-Director, Medical, Child and Adolescent Health Service 3 years ago
We are preparing to make a change
Linda Hop
Acting Nurse Co-Director, Medical,
Child and Adolescent Health Service

Submitted on 4/12/2020 at 8:15 PM
Published on Care Opinion on 8/12/2020 at 12:07 PM

Dear saturncd49,


Thank you for contacting Care Opinion and raising your concerns about the coordination of care provided at Perth Children’s Hospital (PCH).

We sincerely apologise for the experience you have described and the distress this has caused you and your family. Caring for children with complex needs is incredibly challenging and we acknowledge how stressful and difficult this can often be. For patients with multiple specialities involved, our intention is to co-ordinate the transition to adult care in a planned approach, however, this may not always be achieved, as you directly experienced when trying to access dental care for your child.

In regards to the Haematology appointment, it appears we may have made an administrative error at our end when we had attempted to accommodate your request. Whilst we endeavour for children to see a consistent doctor, especially where their condition is complex, this is not always possible. The unit ethos is to work as a team so all the haematologists are aware of each other’s patients, in case the primary haematologist is away. Of course, this does not always work as well in practice as we would like, especially when new staff are still familiarising themselves with the patients. Unfortunately, the haematology clinics have become incredibly busy over the past few years and we are aware they are not running as well as we would like. We are in the process of trying to improve the flow of patients in these clinics to improve our service.

In regards to the dental appointment, we believe we may have some additional information that may assist you accessing dental appointments for your child and we believe the information you have been given may be incorrect.

Without more details, we are not able to confirm this and look into this matter further. As such, we encourage you to contact our Consumer Engagement Team by calling (08) 6456 0032 between 8:30 am-4:30 pm Monday to Friday. Alternatively, you can complete our online feedback form on our CAHS website (http://www.cahs.health.wa.gov.au) or email cahsfeedback@health.wa.gov.au to help us fully understand your child’s complex care needs and ensure your child has a successful transition to adult services.

Thank you again for providing your feedback via Care Opinion and we look forward to hearing from you soon.

Yours sincerely,

Linda Hop

A/Nurse Co-Director – Medical Division

Perth Children’s Hospital

and

Carrie Dunbar

Nurse Co-Director – Surgery Division

Perth Children’s Hospital

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Update posted by saturncd49 (a service user)

Thank you for your response. In my opinion, the planned approach is missing across the board with complex medical patients.

This has been admitted by the very professionals who are meant to enforce it, yet it seems it's left unto us to be a constant voice.

It gives me no hope that we will be shoved straight into adult with no thought of the consequences to the patient and the supporting family.

With complex patients with multiple specialties, appointments used to be made for all on the same day and close together, this has stopped since the move to PCH!

In this current climate, I believe it's ludicrous to keep coming on multiple days which is more risk than coming once.

We now have to do multiple trips which can take up to an hour. With no direct parking for disabled vans and a shuttle buggy that doesn't take electric wheelchairs.

With Haematology, I've had the response I felt was to be expected, utter silence! I have no faith of anyone in that department. As mentioned previously, I believe they have been a complete disaster since 2014. I've had countless conversations with the liaison nurse of the time and it's been documented, yet they still seem to continue to carry on regardless.

I'm not sure on what more information you need, you must be aware of the list of private dentist you're handing out. In my opinion, it's a shame you didn't put special needs or disabled professionals on there. I believe it just shows the rising lack of empathy and care at PCH.

With your feedback and complaints, I've used them countless times and after I never get a response or what's going on so I stopped.

Response from Matthew Holmes, Director of Consumer Engagement, Child and Adolescent Health Service - WA 3 years ago
Matthew Holmes
Director of Consumer Engagement,
Child and Adolescent Health Service - WA

Submitted on 16/12/2020 at 12:02 PM
Published on Care Opinion at 12:28 PM

Dear saturncd49,

I am truly sorry to hear that you have been experiencing difficulties with the coordination of your child’s appointments at PCH and also that you feel that you are not being heard.

It is very reasonable to expect co-ordination of appointments and support with transition to adult services, and I am aware that we do have services within the hospital to facilitate this. Given the feedback you have provided us, I think it would be best for you to please contact our Consumer Engagement team so that a more comprehensive review of your experience can be undertaken. You can do this by contacting us via email at CAHSFeedback@health.wa.gov.au or calling (08) 6456 0032 between 8:30 am-4:30 pm Monday to Friday. I apologise if you feel our service has not provided you with the support you required in the past, but I hope that we could better support you on this occasion.

Thank you again for taking the time to provide your feedback on your experience with us and I hope that this will lead to some positive changes.

Kind regards,

Matthew Holmes

Director Consumer Engagement

Child and Adolescent Health Service

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