One of the problems of being a gay man with an illness that requires ongoing interaction with the health care system, is that one never knows whether the discrimination one experiences is simply gross homophobia, or what I think is more likely the inability of most clinicians in the health care system to actively listen to, or accurately interpret, what is being said to them.
Most of them have absolutely no experience with gays and lesbians, let alone transsexuals, and even if paediatricians, with intersex people. This goes as much for gay and lesbian clinicians as it does with those of non-determinant sexuality. The lack of active listening skills and the inability of many clinicians to take a good clinical history (or to even think about taking a good clinical history) is one of the major failings I experienced as a long-term patient in the Victorian health care system
In April 2012 I had a significant right brain/haemorrhagic stroke which left me with speech and walking difficulties and general left side disability. Having had significant experience as a senior health official I made the assumption that when I asked questions they would be taken seriously and I would be provided with serious answers.
One of my friends who is a clinician (albeit disillusioned in many ways) gave me a wonderful book called The Brain That Changes Itself. This led me to try to find as much evidence as I could about/treatment and rehabilitation. Needless to say I had many, many questions, especially as I was already frustrated by the lack of assistance I was getting to do things that I felt capable of doing.
For instance, I wanted to get up out of the hospital bed and walk around, a request which was continually denied me on the grounds that if I had a fall I would create hours of paperwork for the nurses. My response to that was “tell someone who gives a fuck”. The evidence that I had read said that getting stroke survivors up and active was an important step in their recovery.
The more I looked into this evidence and compared it with the treatment and rehabilitation I was being offered, the more I could see huge gaps between the best practice evidence-based rehabilitation offered in Victoria, and that which was well-documented in many studies and papers about overseas programs
When I asked why could I not have the treatment I had read about, I was told “we didn’t think you’d like that.” What utter bullshit, the treatment that should be offered should be the best available, not based on personal preferences.
Of course most people will take the easiest way, that is often the case, and there is little evidence of effectiveness of many many so-called alternative treatments, treatments that offer an easy path of hope. Those I was not interested in.
I also had to take into account whether or not there was just a little bit of homophobia in the responses I was getting from the hospital. I made no pretence or attempt to hide the fact that I was gay, but I think that a gay parent, whose adult children started to appear and were equally as pushy as their father, totally confused the clinical staff.
I was eventually moved to the Talbot rehabilitation centre, where I immediately identified a number of gay inpatients (one of whom I have since met socially). Although there were a number of organised discussion groups as part of rehabilitation, no one at the Talbot even thought that getting the gay patients together might have been a good idea
I am not suggesting that they should have broken people’s confidentiality, but there are ways of sensitively connecting people, and I think such connections are an important part of the healing processes.
One of the reasons I’m writing this is because just recently Dr George (The Healthy Bear) suggested in his blog that gay men should find an advocate in the health care system for themselves when they are ill. My children were my fantastic advocates but I recognise most gay men do not have children, and I agree with Dr George. However I do not agree with his suggestion that he as a GP, or other GPs, can readily adopt the role of advocates.
Having worked in the health care system for many years, including a stint at a senior level in one of the learned Medical Colleges, I am a well aware of the belief of many clinicians that one of their principal roles is as advocate for their patients. This is true in one sense.
Where that advocacy pertains directly to medical treatment it may be that a clinician can effectively advocate, but many times that advocacy is compromised by the clinicians own interests in clinical experimentation, or the desire to see what would happen if a particular course of action would be taken
For me advocacy should be like treatment – evidence-informed – that evidence being either direct clinical and scientific evidence, or social or sociological lived experiences of the patient. The personal and professional interests of clinicians is far too close to ongoing treatment advocacy not to be mediated by experienced nonclinical advocates
I think it would be a very sensible thing for one of the gay community organisations like VAC or ALSO (if it had its act together) to establish a gay men’s and lesbians health advocacy network. This does not even begin to touch the significant issues that transsexuals and people with intersex must experience in the health care system.