This blog commenced after an horrific experience with the Queensland Public Health System and the realisation that I perceived senior Queensland Health officers to be uncaring, defensive and extremely arrogant if one attempted to give any feedback via the Health Service or the Office of the Health Ombudsman.
I would love to think that the situation has improved, but I don’t find any evidence of that. Families continue to be traumatised by watching their loved ones receive poor care. They see their family members afraid to speak out about their poor care in fear that it will make their plight even worse.
“Their death was riddled in pain, distress and indignity. My sibling is experiencing intrusive flashbacks and I cannot get the sounds of my parent calling out for help out of my mind. I feel we failed my parent because we didn’t advocate strongly enough for them. At the same time I was distressed and not thinking clearly.” Quote from post to Patient Opinion , Australia, June 2019 regarding care at a Queensland hospital.
If one attempts to give feedback, one is typically given a standard organisation response such as . ” We value your feed back and will incorporate it into our reviews. ”
One then leaves with the feeling that all will be forgotten and bushed off the minute you walk out of the room. And it usually is.
I am all too aware of this after attempting to give feedback for two years while it was becoming increasingly clear that no one ever checked the facts or passed on the feedback.
I believe that before the Health Ombudsman Conciliation meeting started, the senior doctor demonstrated her attitude by snapping at me,
“You’ve had an apology, what more do you want ? ”
In fact, I had not had an apology. Even at the end of the meeting, I still had no apology. I believe that after two years of me writing letters, the senior doctor turned up at the meeting with my family member mixed up with another patient and no understanding of the facts because no one had bothered to check. At the end of the meeting the doctor offered me condolences ( which I did not ask for ) and I perceived no indication that anything would change for future patients. She seemed to have absolutely no understanding as to why I was disappointed with her response.
Later the hospital CEO wrote me a what I perceived to be a very rude, aggressive and extremely defensive letter which I still believe was designed to bully and intimidate me. The CEO must have thought Palliative Care patients were so unimportant that he did not bother to check the facts. He wrongly assumed that at the time of the incident the patient was an inpatient taking up a bed and wrote a whole lot of insensitive and irrelevant information, and also wrote that hospitals have an obligation to reduce costs and to ration health services in order to provide the greater amount of good for the greater number of people in the community. Had he checked the facts, he would have known the patient was an outpatient at the time of the incident that the complaint referred to.
I was unable to get a response about this letter from the Health Department. The Hospital Board wrote and said they saw nothing wrong with the response. The Director of QldHealth , Dr Michael Walsh refused to comment about the letter except to say it was “strongly worded ”
I did eventually get an apology for “my perceptions” from Dr Michael Walsh, which I found quite offensive. I wrote assuring him there was nothing wrong with my perceptions.
I then did get an apology from Dr Michael Walsh for the poor care my family member had received but no apology for the rude letter sent by the Hospital CEO. I was thankful that Dr Michael Walsh had at least listened. I never received any apology directly from the health service or the Palliative Care Unit. Even though they said they implemented a few meaningless token gestures, I saw no evidence that they had taken my complaint seriously enough to want to improve service for future patients. They may have taken steps to improve their PR.
There is currently some research relating to cancer survivorship that indicates carers can suffer more emotional stress than the patient with cancer. However if the cancer patient dies, no one counts the social, emotional, health and economic costs to carers.
I have heard of carers being in and out of Emergency Departments and having frequent admissions to hospital when their own physical health deteriorates for years following a death in the family. We have all heard of carers who die unexpectantly soon after the death of the one they were caring for. This cost can be much worse if carers believe the family member did not receive good care. Is there any real research to count the cost to the Health System of poor health care and its impact on carers ?
While a sense of loss and periods of grief are a normal part of life after a death of a loved one. This is a very different situation from carers who suffer years of PTSD ( usually untreated ) after helplessly watching poor care from Health Systems who seem to view the dying and the chronically ill as less human than other patients and make them feel like an unwanted burden on our under resourced Health Systems. We should not be accepting that people will choose assisted dying because they believe that the system is broken and no good care is available. What carer has no ill effects from believing their family member or friend will chose euthanasia because they believe they are a burden and no help is available ?
Many carers devote years or months to caring. They can feel totally devastated from being ill equipped and unable to effectively advocate for better care. They can be forced to watch helplessly in anguish for long periods of poor care without any support or anywhere to turn for help. I know that they say help is available, but I tried at length (all those organisations that you, the Health Department or anyone one else can suggest) during my family members illness and no help is available when it is a matter of poor health care for those with a life limiting illness . Until now I have received no support of any kind from organisations when it comes to advocating for better care for palliative care patients. I discovered Palliative Care Qld get their funding from service providers, and I assume this is why they only advocate for service providers, they referred me to Health Consumers Qld who said they have no funding for Palliative Care. The purpose of Health Consumers Qld is to support Qld Health. The Cancer Council and Carers Qld had no suggestions. Carers are left completely on their own when it comes to poor care.
How many of these carers go on to develop long term PTSD ? How many of these people suffer in silence without any support or treatment because they are too disheartened with a Health System which allowed their family member or friend to suffer without good care because of a lack of care , a lack of resources or health rationing.
I may be able to speak out about bad care, but I am told I am very unusual as most people can’t attempt to give any feedback when care is bad, they just keep their stress inside as they believe the Health System is broken and there is no point speaking out. Many feel too intimidated to question Health Professionals, they can be too emotional and distressed to approach a hospital or the Health Ombudsman. The truth is , if they do go to the Health Ombudsman they will most likely find it useless, as I did.
We have patient charters to protect patients but as pointed out to me by the Health Ombudsman these are just guiding principles and do not provide any instrument for the Health Ombudsman to act on. It seems in Queensland, Health services are aware that there is no penalty for poor care especially when it involves the dying who seem to be considered to have no value by our hospitals and our legal system as they have no longer any earning potential and are easily considered to be some kind of sub human group who are nothing but a financial burden.
Governments and Health Services seem to believe that any step to reduce this cost burden is a good step, but no one counts the human suffering that results from poor health care. I have seen people burst into tears when they remember the end of life care that their family member or friend received years ago. There is no way these people will have the strength to provide feedback or to fill out a survey. These people remain silent and unheard.
Young carers miss out on education and social development, they can easily become mentally ill or chronically unemployed.
How many young carers never effectively resume their education ? or gain meaningful employment ?
How many carers become chronically ill ?
How many carers become chronically unemployed ? or under employed ?
How many mature aged carers ( over 40 ) become too despondent to ever attempt to re enter the work force ? They will not be counted in unemployment figures if they are not on Centrelink benefits.
How often is post caring stress or PTSD a factor in suicide ? and what is the ongoing flow on health costs to families affected by these suicides ?
What is the financial cost of poor health care ?
Why is there no advocate for people in need of end of life care ?
Why is there no support or help in Queensland when carers are forced to stand by helplessly watching poor care ?
Why does our Health Minister ignore all these issues ?
Featured image by
Alexas_Fotos via Pixabay