Complications after private surgery: where to turn to?

Summary

A patient shares her experience of life-changing complications after a hysterectomy she had at a private hospital and the lack of follow up and help she's received since. She highlights the actions she would like to see in place for private hospitals around informed consent, follow up and support after surgery, and accountability. The patient wishes to remain anonymous.

Content

I had a hysterectomy at a private hospital back in 2015. I had a complex history of bowel disease and severe endometriosis and had already had a lifetime of surgeries plus a stoma before the hysterectomy. I had been referred to a particular gynaecologist at the private hospital owing to his expertise in complex cases. The outcome was horrific; my bowel perforated and the contents flooded out through my vagina. I was transferred late at night to a NHS teaching hospital where I spent 3 months faced with the prospect of never eating or drinking again. The complication was an enterocutaneous fistula – one of the most serious complications of abdominal surgery.

The private hospital never contacted me. Prior to the operation, I had no information on the likelihood of such a serious complication; a rushed consent form was signed and off I went totally unaware of how this would change my life forever.

It sounds dramatic but the lack of communication was just awful: no information, no guidance on what to do if things go wrong. Plus of course I was seriously ill and in no position to challenge anyone. I went on to have an attempted repair that resulted in respiratory failure and sepsis. I’ve never recovered.

I now have to wear three bags – two for the fistulae and one for the long-standing ileostomy. I have been told repair is too dangerous, so this is me for life. The systemic inflammation is causing other health issues, including a serious eye condition. If I have the luxury of growing old, it’s going to be difficult managing it all. 

I understand complications happen, and I’m not saying anyone was negligent. But the outcome for me was the same. I was severely harmed. If there had been mechanisms in place to deal with these rare events, I’m sure I would have managed things differently.

I developed post-traumatic stress disorder (PTSD) and severe anxiety. I believe it was the poor institutional response, the lack of acknowledgment and information from the hospital that has contributed to this.

I have tried to get support and answers, but the hospital told me initially and repeatedly that they were not accountable; private hospitals were merely hosts with no responsibility to the patient. In recent years I have found this isn’t actually true but of course time limits are now exhausted, leaving me to have to fight every step of the way. I have been unable to find an advocate and of course PALS and Community Health Council do not help private patients. There isn’t even an Ombudsman. 

The private hospital told me outcomes like mine are so rare, that there are no systems in place to support patients as the service would be so rarely used.

Rare does not mean never and, if that’s the case, how can they possibly justify taking on complex patients. I feel broken.

If someone asked me what would have helped, these are my thoughts:

• Private hospitals should make their position clear at the outset and prior to any surgery taking place. They should clearly state who is accountable if things go wrong and what steps are in place should a serious outcome occur.  
• Private hospitals should not take on complex cases if they do not have the facilities and expertise to deal with things if things go wrong (most private hospitals do not have ICU facilities). 
• The patient should be given detailed information about the intended procedure and information on what may happen if they decide not to have the procedure. 
• If the outcome is severe, the patient should be supported by an advocate or specialised nurse who can act as a go between for the patient and surgeon. 
• The long-term outlook should be discussed and the patient should be advised of any further options if complications occur.
• Patients need to have clear signposts to where they can get help whether it be the complaints process or litigation. 
• At the moment it seems the surgeon assumes responsibility for the patient if complications occur.  While this may work if the complication is short lived, there seems to be nothing in place if the complication is life changing and permanent. What happens to the patient if the surgeon retires or leaves? No one can or will answer me.   

I am trying to get answers from the hospital but have been told they may not accept a complaint because I’m out of time. I have explained why I did not make an official complaint earlier as I was told I had nothing to complain about and the hospital was not accountable, plus of course I thought I’d heal. It turns out neither were true. I have and I will never  heal. I am in the process of compiling my complaint but I have to prepare myself for a standard letter saying I’m out of time. I'll be pretty devastated if this is the case as moving on without answers is all but impossible .