One of the things in life that at some time everybody will need is good health care. Like birth and death sometime we all get sick. I believe that good health care is a fundamental human right. Medical professionals should treat people with respect and understanding. Sadly that is not always the case. Often marketing and health and safety messages come before health care provision, and understanding the needs of sick people.
This is what the sign says
Our Shared Values
Everyone at the Royal Children’s Hospital Health Service District Strives to work by these values:
We believe young people deserve the best we are able to give them.
We take ownership for our actions.
We except change and use this as momentum to achieve excellence.
We work towards positive and creative solutions and in learning we make mistakes.
We understand that everything we do in this organisation impacts on others and our actions contribute to our strengths as a whole.
Constructive behaviour that supports our mission and vision is encouraged and destructive behaviour is unacceptable.
The question is what does this mean, and how does it apply to the health care that the hospital provides.
Since founding the Costello syndrome support group almost 15 years ago, at a time when there was only a small amount of information, and the idea of a care plan based on evidence of the condition was impossible. Over the years through better understanding and research, this should no longer be the case. With several publications written about caring for a person with Costello syndrome in the medical literature, it should be expected that the medical professionals provide the very best care based on knowledge and understanding.
Sadly this is not the case, parents can be treated with disrespect, contempt, and some would say the care provided was both bullying and insulting.
This is just one story, how many others have been let down?
…..last year we had ongoing issues with our paediatrician not listening to us at all. Several times I told her that my daughter was was refusing feeds. This is a normal situation in Costello syndrome, CS babies do not like to feed, it is a well known part of the syndrome, yet our doctor kept fobbing me off and telling me to just persevere. The literature says
Disease characteristics.
Costello syndrome is characterized by failure to thrive in infancy as a result of severe postnatal feeding difficulties
Ref: Gene Review
This is the first line of the description for the syndrome, so being told to persevere would not help or improve my daughter’s feeding issues. One day I ran into the registrar at the hospital who realised my daughter had lost a huge amount of weight and could barely stay awake. She was admitted immediately. I could see that my daughter was having cyanotic episodes both awake and asleep, I informed the doctors, but sadly they would not listen, until she until she was declared SIDS near miss and stopped breathing 7 times in 5 hours.
“We believe young people deserve the best we are able to give them.”
After our Paediatrician went on maternity leave I hoped that her replacement would be better at understanding CS.
The new Paediatrician it seems had been educated by the initial Paediatrician. Our first meeting with her was in the midst of our first major complaint against the hospital and she sat there and said all the right things to acknowledge our concerns and our anger at the lack of quality care . (invasive testing done against our wishes, wrong medications given, medicationss not given, feeds not given… at one point she was starved for 18 hours because they ‘forgot’ to feed her!)
“We believe young people deserve the best we are able to give them”
As soon as we left, she sat down and wrote a letter to every other team involved in my daughter’s care AND MY GP telling them that we were hostile parents and that our hostility possessed no valid concern and that it was simply nothing more than grief over the CS diagnosis incorrectly misdirected at the hospital and medical staff.
“We work towards positive and creative solutions and in learning we make mistakes.”
We needed to know more so we went to the 6th CS conference in the USA. The knowledge we gained was amazing, and we had several recommendations, including a recommended testing strategy written by the world experts in CS, the testing included, ultrasounds of the abdomen to screen for cancer, Cardiac evaluation and echo cardiagram and MRI for ruling out Chiari malformation.
We had been asking for an MRI since May and the new paed refused, saying that it was totally not necessary and that we had no medical background and we couldn’t do a diagnosis on something that we read on the internet or from a few words from an overseas stranger (who just happened to be an expert neurosurgeon specialising in CS).
“We except change and use this as momentum to achieve excellence.”
“We believe young people deserve the best we are able to give them.”
Finally a surgeon organised the MRI piggybacked onto her surgery and lo and behold it showed that she had a severe Chiari malformation with severe hydrocephalus (which is what we had been questioning all along!).
“We work towards positive and creative solutions and in learning we make mistakes.”
When the surgery was done in January 2010 the Neurosurgeons said that her Chiari was so severe that her cerebral tonsils had impacted into her skull for so long that they had become necrotic and he had to remove a section of her cerebral tonsils.
A lack of care, an inability to listen or lean had lead to what could have been a potentially disastrous outcome.
Back in September when we first got the Chiari diagnosis, I made another complaint then and demanded a new paediatrician who would actually listen to us and work with us to care for our daughter.
We were given a new paediatrician . When we had our first meeting with him and everything seemed to be great. We go home and the first time we need him we find out that he’s only in the hospital 8 hours a week… and he doesn’t have his own registrar or resident, so we just have to deal with whoever is taking his calls that day. There was no continuity of care. He completely ignored issues that were raised in September and only finally addressed them in January when I told him that my daughters surgery was going to be cancelled. So he started her on some medication but did nothing about investigating the problems at all.
“We understand that everything we do in this organisation impacts on others and our actions contribute to our strengths as a whole.”
She goes in, she has her surgery and the hyponatremia that he had started the medications for becomes severe post neuro surgery. She gets rushed to ICU. Everyone is jumping up and down for the hundredth time about the fact that her electrolytes are so out of whack… but the doctor just shrugs it off and says it’s fine.
“We believe young people deserve the best we are able to give them.”
Finally, 3 days before she’s discharged, I ask to have him paged to talk to him and get told that he is no longer our paediatrician. He has removed himself from our daughters care.
Furthermore, there is not a single doctor in the hospital that we can find that is willing to take any ownership for my daughters medical needs. I get upset and angry, they they will sort it out and we won’t have this problem again, except we are stuck in the same never ending cycle of lack of care and support.
“We believe young people deserve the best we are able to give them.”
Now 5 weeks later we are still stuck, helpless and controlled by a broken system, that is not providing the car they profess to be so good at providing.
I have spent un countable hours phoning social work only to find that the social worker is never available. I have been as high as the medical directors office only to be told that there is no one in that role this week and basically told to just suck it up and it will be resolved when it’s resolved.
“We believe young people deserve the best we are able to give them.”
The problem I have is that we still have no paediatrician. I am chasing every other team on my own trying to find someone to help me sort these issues with my daughters health out and get us the referrals we need.
No one will help us.
Everyone just keeps saying it’s up to the paediatrician.
Yet they don’t acknowledge or recognise the fact that we do not have a paediatrician
We are moving in 5 weeks and I have no one to give a referral to the new hospital to start arranging her care. We are trapped by the lack of current care, unless We have the referrals from our current doctors the new hospital can not do anything for us.
All this from a hospital that proudly displays the notice above. A notice so full of good words and aspirations, yet words that mean so little, words that are not heard or thought about by the doctors who should be providing the care. It is a sign full of worthless words.
g a small support network it can be hard work to raise the funds needed to carry on with the work we do. so why not help and support us by shopping till you drop.
