Want to help make the RCH an even better children’s hospital?
We are looking for enthusiastic parents, carers, guardians and young people to take part in a special workshop and tell us what they love about the RCH, how we can improve and what we could be doing better.
We’ll be holding the workshop on Saturday, October 29 in the Larwill Workshop Space at the RCH.
It’s an opportunity for everyone who has a relationship with the RCH to provide feedback and identify priorities for change that will be reported to the hospital Executive.
We look forward to seeing you there!
What: 2016 RCH Consumer Forum
When: Saturday, 29 October 2016, 10am-2pm
Where: Larwill Workshop Space, 48 Flemington Road, Parkville
(Turn right on entering the main RCH entrance and continue to end of thoroughfare)
RSVP: rch.events@rch.org.au
21 comments for “The RCH needs you! Tell us what you think!”
Sandra McLaglen
I wish to advise you of the difficulties having a small/young child staying on Kelpie ward it is not the place for any child who is not an adolescent. The nursing staff are not equipped to cater to the needs of one or two toddlers with all the angst and disharmony that fills that ward.
I spent 47 days on Cockatoo with a two year old days filled with I heartache and upset but they were also supportive and joyful too then JUST 9 DAYS on Kelpie and those 9 days were excruciating.
walshh
Dear Sandra, Thank you for your feedback. We hope you’ll be able to make the Forum! With first-hand experience of the RCH, your feedback is valuable and will help us improve. Our Consumer Liaison team would like to discuss this feedback with you; you can reach them on consumer.liaison@rch.org.au Thank you.
Meghan Harvey
RCH desperately needs a bowel management program for children with anotectal malformations and hirschsprungs. There is an age gap between newborns post bowel surgery and 5 year olds. A clinic for children suffering continence issues would help immensely with long term quality of life. Having a child born with the congenital malformation we are witnessing first hand the lack of support available in this age group. It has a transfers effect through everything, from mental health issues to isolation.
This program has seen amazing results in the USA, Europe and South Africa! Sydney children’s hospital has just taken on a program very similar, and two Surgeons at RCH are advocating for the program to be introduced here.
With the increase in children being born with congenital bowels malformations on the rise, this is an area that needs urgently attention to help give kids the best chance they can at achieving continence and social acceptance.
walshh
Dear Meghan, Thank you for your feedback. Feedback like this will be discussed at the Consumer Forum, which we hope you’ll be able to make! If you’d like to provide feedback in the meantime, you can reach our Consumer Liaison team on consumer.liaison@rch.org.au Thank you.
Bridgette Anne
I absolutely agree with Meghan. Our son was born with an ARM and we had to learn the hard way about how to manage his condition post stoma closure. There was very little support available through the hospital, stomal therapy were and continue to be extremely poorly resourced, there was no professional or formal education around our sons’s defect or advice about how to engage with other parents with children like mine. I would be very interested in attending to explore ways in which we can improve education, treatment/management, psychological and practicable support for children who have lesser known conditions and are taboo and poorly funded. Thanks.
Leedie Lew
prefacing my comment with stating that the vast majority of staff were lovely, and I think the issues we encountered were more systemic than practitioner based.
-Despite repeatedly telling staff that my child was likely on the spectrum (autism- suspected but not formally assessed at the time, now confirmed), staff did not accomodate my requests to make his admission for appendicitis more manageable eg. IV paracetamol (cannula was already in) instead of oral paracetamol as he often vomits with the suspensions (which he did post administration). I believe this is more a lack of education re: autism/sensory processing issues than staff overtly ignoring my requests.
-Pain management was absolutely inadequate. Transferred to ward with only paracetamol charted for suspected appendicitis (which it was) and when my child woke up in agony, it took TWO HOURS (of him screaming and writhing in my arms) to be charted appropriate medication. (The nurse was beside herself, but supposedly no doctor was available to approve a phone order…)
-Ultrasound did not occur on the night of arrival as it was ‘too costly’ to call in a sonographer and there isn’t a guarantee that an ultrasound will confirm appendicitis. Ultrasound took place the next day confirming appendicitis and surgery took place shortly after that; likely due to the delay, the area had become purulent so my son had to have 48 hours of IV antibiotics. Surely the additional day of my son needing to be admitted cost the system more than calling an ultrasonogropher in?
Frankly my son and I were both traumatised by the whole experience and hopefully changes have been made to ensure children are charted appropriate pain meds before transfer from ED to the ward, and staff are more educated regarding children on the spectrum/with sensory processing disorders, and appropriate diagnostics take place in a timely fashion to prevent patient deterioration.
walshh
Dear Leedie, We’re sorry to hear you’ve had a negative experience at the RCH and understand your frustration. Our Consumer Liaison team would like to discuss this feedback with you; you can reach them on consumer.liaison@rch.org.au You have a valuable contribution to make to the Consumer Forum and we hope you’ll be able to make it. Thank you.
melissa wiersema
my son was admitted straight after birth with a pneumorthorax me and my husband were givin the new mothers room our issue we had was fathers should have the same rights as mothers we found it to be very sexist in the fact my husband had to pay to stay with me in the same bed there was 1 night were i just wanted to spend the night with my older children cause they hadnt seen me for nilly a week while my husband was going to stay with our son at the hospital but couldnt or i would loose the room and he would have to pay for accomadation. yes i understand its to give mums a break after they have just given birth but the fathers go through alot also when their wife is giving birth and waiting for their newborn child wondering if everything will be ok
walshh
Dear Melissa, Thank you for your feedback. We hope you’ll be able to make the Consumer Forum to share your firsthand experience of the RCH. If you’d like to provide feedback in the meantime, you can reach our Consumer Liaison team on consumer.liaison@rch.org.au Thank you.
Salesi Katoanga
Hi – I have a daughter with severe cerebral palsy who is currently in ICU. Unlike other kids that have soft toys or blankets as comfort items, my daughter’s comfort item is her favorite movies or shows. Due to her cerebral palsy she has an ipad and a flexible gooseneck holder that we can position near her bed to allow her to watch her shows. As a lot her shows are streamed on her ipad, I find the RCH Guest wifi access as being to slow to support streaming of her favorite shows. I have resorted to using my phone as a hot spot but given that she will be in hospital for a few days this is probably not going to be sustainable. Do you offer any options for faster wifi access for kids with severe disabilities, or who are in ICU, or who are likely to spend a considerable amount of time in hospital.
Kind Regards
Salesi
walshh
Dear Salesi, We’re sorry to hear your daughter is so unwell, and hope she’s beginning to feel better. We try and make wireless access available to everyone at the RCH, but it does mean that many people will be using it. If you’d like to provide feedback and speak with someone on our Consumer Liaison team, you can reach them on consumer.liaison@rch.org.au. Thank you.
Fiona
My son has been using the hospital since he was very young and I have felt incredibly blessed that we have such an amazing hospital until….. my son is now a teenager and has been diagnosed with Autism, depression and anxiety. A few months ago my son attempted to take his life (thankfully unsuccessfully) he was taken to hospital by ambulance.
We were put into the family lounge room, never offered a room and once in there never seen a staff member until we seen the psych 5 hours later.
This all occurred at dinner time and so none of us had eaten, I also had my daughter as she was the holder of allot of information that would assist decision making and understanding of the issue.
I could not leave my son to get us dinner and I could not let my daughter get dinner as she was to young. We all heard a family a few doors down being offered a meal and all I needed was someone to sit with my kids so I could feed them.
I do think there is a stigma around mental health. I think your psych doctors are understaffed and I think more training in mental health would not go astray.
Jackie
My son has been seeing the cardiologist staff there for the last 12 months. He has been to emergency 4 or 5 times and admitted once. I really couldn’t fault anyone we have felt with in the hospital. The Koala Ward staff helps calm my nerves and kept is sane all while holding a professional, caring, upbeat front for my child.
walshh
Thanks Jackie; it’s reassuring to hear you’ve had such a positive experience at the RCH. If you are able to attend tomorrow’s Consumer Forum, we would love to see you there! Wishing you and your son the very best!
Monica hlisic
I honestly think yous do an amazing job. Although I think there should be more support around eating disorders and other mental health problems and that people like me should be taken more seriously when coming to emergency after self harming etc because I’ve noticed even though we can tell the psych doctors were not feeling safe they still discharge us a lot of the time.
And also I think that when coming to emergency for selfharm related stuff we need to be treated like any other person, we’re just like you all and all the other patients! And nurses or for example grant that works in emergency needs to be a bit more mindful and think before she says things because it’s not okay.
Ohh and shout out to Lori and tommy from live wire yous da best ❤️
walshh
Dear Monica, Thank you for taking the time to message us and provide feedback. Our adolescent patients and families are invited to attend tomorrow, and we certainly hope you’ll be able to make the Forum! With first-hand experience of the RCH, your feedback is valuable and will help us improve. With regards this feedback, our Consumer Liaison team would like to discuss this feedback with you; you can reach them on consumer.liaison@rch.org.au Thank you.
Declan
Hello I have a very sore stomach and they have done treatment but that didn’t work and I will be admitted tomorrow morning if they are still problems with my stomach.
walshh
Hi Declan, we hope you feel better soon. Our doctors and medical staff will look after you if you need to be admitted. Best wishes!
Declan
Thanks for your help.
Sue
My grandson was admitted to the butterfly ward at five days of age after suffering seizures. It was terrifying for the whole family but particularly for the first time parents. I was so impressed and grateful for the way all staff treated us but particularly the medical staff. The medical staff were so thorough but also very considerate and caring. The facilities are marvellous and I feel that we are so very lucky to have such a fantastic children’s hospital here in Melbourne. I hope all the staff who work there feel proud of the hospital and the wonderful job they do. Thanks
walshh
Dear Sue, Thank you for taking the time to provide feedback. It sounds like it’s been a truly challenging time for all the family and we’re glad to hear our staff on Butterfly made things easier. Wishing your grandson the very best!