This is long - needs must - it is a response to the NSW health Minister's disgraceful decision not to investigate the Health Care Complaints Commission's (HCCC) inept investigation of my husband's medically caused death in 2007. I also asked for an Independent Inquiry into his death as mentioned in a petition launched by the now deputy Premier of NSW Mr Stoner - that is also denied. Things change when they get into Government


13th October 2011
 Ms Jillian Skinner
 MP Minister for Health Minister and  for Medical Research
 Level 31, Governor Macquarie Tower,
1 Farrer Place, 
SYDNEY NSW 2000 
 Dear Jillian,
 I am in receipt of your letter dated 29th September 2011. I am sorry to say that the response is not good enough. Whilst in Opposition I was given excellent support by Mr Andrew Stoner and as well Mrs Leslie Williams who is now our MP. Both of these supported me by helping launch my book which outlined the series of avoidable medical disasters which led first to Don’s shocking, brutal and prolonged suffering and then his death. Obviously they thought that there was something terribly wrong in what was done to Don and wrong with the investigation. Andrew Stoner called it “disgusting” when the HCCC claimed in their letter to me that Don wouldn’t have felt the pain of having his lungs suctioned at ten times the required value for 22 hours, “because he was a quadriplegic”. 
 The HCCC's interpretation of an "investigation" is clearly different from any other. There was no investigation for there was no outcome. Did the HCCC report Don's investigation to the Joint Parliamentary Committee on the HCCC? If so, when? Where is it in the Hansard? What recommendations came out of that “investigation” that will ensure not one other repeat occurs? The Internal RNSH investigation found multiple areas of fault and made a series of recommendations which hopefully went some way to protecting the next poor vulnerable disabled person who travelled down from the country, but the HCCC went totally in the other direction. This is the same body, paid for by taxpayers who allowed Dr Reeves to practice when he should have been de registered and jailed years before. That in itself should be enough to bring their efficiency and neutrality into question. The medical ignorance evident in their final letter to me was breathtaking. Whoever their medical expert was, they had no medical knowledge of Quadriplegia and couldn’t even get the timeline right. It was a real dog’s breakfast. 
 Recently I had to have routine day surgery. I am a well person and I was given blood tests, ECG and a multiple of tests. I was pleasantly surprised at the thoroughness of the Pre Op care given. This in Port Macquarie Base Hospital. As this was being done I couldn’t help wondering that if only some of what I was receiving had been done for Don how different the outcome would have been. None of these basic Pre Op’s were done in RNSH for Don who I remind you was not an emergency, even though the HCCC for some reason tried to generate a state of urgency to explain these serious issues away. I have to wonder why they would do this if they were acting to investigate. How can the HCCC excuse this behaviour from a Cardiothoracic Surgeon who would have known better? Please explain to me how that is acceptable? 
Please read the following quote which was the cover sheet of the Petition which Mr Stoner launched in Parliament in 2008, “On behalf of Don my husband of thirty-five years, our daughters, and myself, I request authorities begin an independent, open investigation into the surgery, treatment, care and subsequent death of Donald William Mackay. His death was a direct result of five weeks he spent in RNSH between 11th April 2007 and 17th May 2007 (the day he died). I request that the Cardiothoracic surgeon and team, the Spinal Ward doctors and nurses who ignored my husband’s worsening condition receive disciplinary action because of their negligence, which led to Don’s first Respiratory Arrest and inability to come off ventilation. ICU and Cardio Thoracic Specialists who withheld full disclosure of his condition from us should receive disciplinary action. Their non-disclosure led to Don being subjected to unnecessary torture, which lasted five long weeks. I request that the filthy practices and deplorable conditions he endured without choice in ICU be exposed. Legally, ethically, why and how are the medical practitioners protected from criminal charges?” Andrew Stoner was supportive when we launched the Petition outside Parliament House as well so I took it that he would have the support of the Coalition in this. I am disappointed that now the Coalition is in Government that support is not evident. I would like to know why the change? 
 If you as Health Minister accept that all Don’s treatment was acceptable as the HCCC claim then you must think that the dreadful treatment Don received and the covering up of their mistakes is good enough for the people of NSW. 
 On 11/4/07, Don arrived at RNSH at 10pm from Port Macquarie on Wingaway’s non urgent transport plane. It was not an emergency. A doctor whose English was very limited signed him up for the dangerous and unnecessary surgery within the hour that night (Pleurodesis). This doctor cannot recall what he told my husband about that surgery. We spoke with him later and had to ask a nurse to translate what he was saying. I know it was dangerous and unnecessary surgery because I spoke with Don’s Spinal Specialist after Don was killed and she was shocked he had had a Pleurodesis, as she knew his weakness – she said and I quote, “All that he needed was a simple lung drain and biopsy, and if fluid re accumulated in a few months to do the same again.” 
Don’s lungs were not strong enough and a responsible cardiothoracic surgeon would have known this had he bothered to do even the most basic of pre op observations. The next morning as I was driving from Port Macquarie, Don was being given dangerous and unnecessary surgery (Pleurodesis) by the RNSH’s Cardio Thoracic surgeon who just “assumed” Don had been examined, by a cardiothoracic specialist in Port Macquarie? This was not only unprofessional but was gross medical negligence especially in such a vulnerable and defencless patient. 
 The HCCC say it was acceptable that there was no ECG prior to surgery although Don had Pericardial Effusion (10 months). Do you as health Minister believe that this is acceptable practice for anybody? 
 The HCCC say it was acceptable that Don had neither blood tests nor any pathology before surgery. Do you as health Minister believe that this is acceptable practice for anybody? 
 The HCCC say it was acceptable that the Cardio Thoracic Specialist who was also the surgeon saw no X-rays or Scans prior to surgery. (They were still in Port Macquarie Base Hospital.) Still acceptable to you? 
 The HCCC say it was acceptable that the review by the Anaesthetist is admitted by RNSH to be “limited”. He was not seen before theatre. Limited why? Don had complicated medical problems and required proper assessment. Would you expect even your dog to be treated like this? 
 The HCCC say it was acceptable that the Cardio Thoracic surgeon had not seen Don before Theatre and had not done a detailed examination. The person who signed him up the night before was not part of the surgical team. No one knew anything about his multiple conditions before surgery. How irresponsible and dangerous was that? Still happy with the HCCC findings? 
The HCCC say it was acceptable that Ungraded Talc known to be connected to Acute Respiratory Distress Syndrome (which Don developed) was used. Since his death, they no longer use this. They were aware it was linked to Acute Respiratory Distress Syndrome (ARDS). Why was it used? Was it cheaper? If you are not disturbed by now by the HCCC finding all was acceptable I would like to know why. 
The HCCC say it was acceptable that my husband’s right lung which was meant to be suctioned until all the fluid was removed at the gentle suction of 3KPA. Was suctioned (vacuumed) at ten times that value at 31KPA. This was left like that for almost 24 hours and was not spotted by Cardiothoracic Doctors, and the Spinal Unit’s nurses till 8am the next day. All RNSH staff involved are culpable as this was covered up and I did not find out for seven months after Don’s death. They knew what they had done to him and we should have been told. Instead they lessened their observation frequencies, ignored my panic as he got worse, and his lungs collapsed. This was an event Don as a Quadriplegic was never going to survive. Any lung injury is disastrous for Quadriplegics. We consider that this covering up and hoping for the best was criminal behaviour. What do you think? Is this acceptable as claimed by the HCCC? 
The HCCC say it was acceptable that Cardiothoracic were ignorant of “Quadriplegic breathing” which makes it harder to breathe while sitting up when there are problems. These specialists ordered him sat up in his wheelchair. He rapidly deteriorated. I begged the Spinal Nurse to return him to bed she refused. He suffered three hours of extreme torture trying to breathe against gravity. He had a Respiratory arrest that night. Why were they all so ignorant of his condition? Jillian I still have the images of my lovely husband struggling to breathe, hallucinating, frightened only to be lectured to by a nurse that he’d have to stay in the chair for hours. If we are on the same page, surely by now you yourself must have concerns. Cardiothoracic should have known not to sit up someone with suctioning of the lungs in progress as this can cause the Pleurodesis surgery to fail and can lead to Acute Respiratory Distress Syndrome. This happened. Why did they allow this? No answers? The HCCC say it was acceptable that the surgeon was irresponsible and did not bother to see that all procedures pre and post surgery are followed. Almost none of the regular procedures were followed. There is no excuse for this? From the moment the specialist laid hands on Don, Don had no hope at all. It was such a huge botch up. All acceptable to the HCCC and any who support their claims. 
The HCCC say it was acceptable that Spinal nurses, Doctors and Cardiothoracic were grossly negligent over the next days. He was treated badly as his condition became dangerous. He began to hallucinate and gasp for breath. This was extreme cruelty and shocking for him to experience. 
The HCCC say it was acceptable that on the night of the first of his respiratory arrests, he called my name for three hours according to his roommate and they did nothing. They only took notice of him when he was close to Respiratory Arrest. I spoke to his roommate that day and he was really upset by what he had seen Don go through with only intervention when he was close to Arrest – he was ignored all the time he was calling out. I was five minutes away next to the hospital and had given them instructions to call me at any time if he needed me or things got worse. I was only called when he was taken to ICU. 
The next five weeks in RNSH’s Intensive Care Unit were horror-filled. Dreadful images to carry, but how much worse for him? I try to see him as he was before their negligence allowed him to be filled with infection, sepsis, fluid and God knows what. I cannot. I see my beloved husband tied and gagged by tubes. Both lungs drowning and full of fluid. MRSA and Klebsiellia Pneumoniae filled them with bloody mucus. I still see him with his tongue being forced painfully in and out, as he reached yet another respiratory arrest. One time he was breathing 50 breaths per minute. He was so frightened and I could not help him. An ICU nurse stood and did nothing. “I think he’s trying to talk”, she said blithely. An ICU nurse! 
It went on like this for five weeks. If I feel like I have been in a war zone how much worse for my husband? Is this acceptable as the HCCC claim? 
 What I have relayed here is sadly for Don just the tip of the iceberg as to the dreadful suffering inflicted upon Don. Finally, he was allowed his wish, which was simply to get out of the filth and chaos, go home and die. Even then, after all they had done to him, it depended on conforming to their demand that the home respirator be taken away as soon as he got home. Apparently, there was not one other home respirator in RNSH or at Port Macquarie or anywhere else in the Northern Areas’ Health Service. So even having a little time to spend with us here at home before he died was denied to him. 
 Jillian, Don was killed, he didn’t just die. It was a death caused by gross negligence, ignorance, stupidity, arrogance, filth and cost cutting. I should not have to be chasing justice on behalf of my husband, daughters and myself. Those responsible should be prosecuted and or receiving disciplinary action for killing my husband Don Mackay and robbing our daughters of their wonderful Dad. Those most responsible should not be still practising inside Royal North Shore Hospital. It would be better for NSW residents if they were not in the health system at all but Royal North Shore Hospital buries its mistakes with the approval of the HCCC who have turned a blind eye to some of the most outrageous of medical error, medical negligence and cruelty I have ever come across. 
I read of medical error in the media and my heart goes out to those involved as I know what a battle they will have if they want to change things and not just be compensated. I do not know of anyone who suffered for as long as Don did and he experienced the worst medical care I have ever come across. All avoidable had they taken care of him professionally. The Spinal unit and ICU were and probably still are a disgrace. The treatment Don received was consistently bad. I can not remember their making any decisions which improved things for Don – everything they did to him from his first moments there added to his suffering and brought about his death. This is not acceptable. 
The HCCC’s decision that it is all acceptable is wrong and unjust. I know what we saw and what we discovered and not once have I been proven wrong in any instance. I have to wonder what the HCCC actually exist for and how come they have been not been called to account. 
If it is acceptable that in 2007 a resident of NSW, a physically disabled man who has already had more to bear than most of us can have his suffering and death as mentioned all avoidable – called acceptable by the authorities, then there is long way to go before we can call ourselves civilised. If this were any other death apart from medically caused there would already have been justice done.  
Nothing I see leaves me with any hope that things will improve. As far as I can see the problems with medically caused death and injury can only get worse because no one is taking to task those who are supposed to investigate with neutrality, not in the adversarial way many of us who have dealt with the HCCC experience. For me the issue is sadly becoming clear, that the life of one frail disabled man is not worth upsetting the Medical Specialists and Health Department. I see nothing that tells me this is not true. 


You have suggested that I respond to your letter to Mr Paul Russel from the North Sydney Local Health District, but as I wrote my letter to you I prefer to continue as you are the Health Minister.