Earlier this year I had a nervous breakdown. This later lead to depression and anxiety over a period of a few months. For the first time I became a client of Victoria’s mental health support system. It was a revealing experience.Last week I had dinner with a few deaf friends who have had firsthand experience of the Victorian mental health support system. The experience of my friends mirrored my own.
I have no wish to be disparaging of the wonderful people who make up the Victorian mental health support system. They are, by and large, a wonderfully dedicated group of professionals. They work in a stressful and challenging environment and do a terrific job. The problem is that they are expected to be able to meet the needs of such a wide range of people, including people who are deaf. This is an impossible task.
My own experience began when I broke down. I was at work and began sobbing uncontrollably. I sought the support of a colleague. My colleague acted quickly and organised for me to see a counsellor later that day. Obviously, being deaf, I needed to arrange communication support to access the counsellor. This is no easy task when you are already distressed. Auslan interpreters are also in short supply.
Interpreters are generally not available at short notice. I was largely out of control and I was expected to organise my own support. I could have requested that the counsellor organise the interpreter but experience tells me that most counsellors would not even know where to start.
Luckily enough I still had the presence of mind to reach out for help. I sent a text to my wife and closest friends, one who happened to be an interpreter. When I went to this first counselling session my interpreter friend interpreted for me. There was no payment involved. It was totally pro-bono. I was very lucky indeed.
There are plenty of people who are deaf and experience mental health issues but do not have the same knowledge or contacts that I do. What happens to them? Who supports them? How will they get the same quality of support that I did? Lots of questions and so few answers. The reality is that, more than likely, they are required to fend for themselves.
The risks from lack of communication during a mental health crisis are many. These risks are compounded by the diversity of needs of many people who are deaf. What of those that rely on sign language interpreters, how do they get one at short notice when there is a crisis? What about people who are deaf who also have literacy and English language issues? Or what of people who are deaf who do not sign and rely on lipreading and quiet environments? The risks of misdiagnosis from communication breakdowns are many.
Sarah Bowen, B.A., M.Sc. notes that, “It is generally agreed that the best communication is achieved where health care providers and patients speak the same language.” Bowen also notes, “There is compelling evidence that language barriers have an adverse effect on initial access to health services. These barriers are not limited to encounters with physician and hospital care. Patients face significant barriers to health promotion/prevention programs: there is also evidence that they face significant barriers to first contact with a variety of providers.” Finally Bowen notes that, “…evidence also demonstrates that they have reduced access to mental health and counselling-related services.
Bowen is from Canada and her paper relates not only to people who are deaf but also to people from ethnic backgrounds who do not speak in the official languages of Canada. What is clear is that language is a significant barrier at the first point of contact in the health system. This includes mental health crisis type situations.
My experience of accessing support based on my own mental health crisis was far from ideal. A few weeks after my initial breakdown I had an episode that required me to attend hospital. My wife attended with me. She is also deaf but hears much more than I. She acted as my interpreter. Of course this is not ideal. My wife was already stressed from the distress that I was in. To have to interpret for me compounded this stress immensely.
Upon being admitted an interpreter was requested. We were told that there could be up to a 48 hour wait. While the nurse and doctors were wonderful, the burden placed on my wife was immense. I was admitted early in the morning. My wife had to return home to check on the kids so I was left on my own for a time. During the time alone I was visited by a woman. The role of this woman I am still not sure because communicating with her was difficult. She could have been a doctor, a nurse or simply a social worker, I have no idea.
The woman was obviously part of the mental health support team. She had a disability, cerebral palsy. She walked with some difficulty. Her speech was probably ok to understand but because of the muscle coordination issues that she had she was difficult to lip-read. She communicated with me in a mixture of writing and speech. We got by but it was not a smooth experience. I managed to understand that – ‘I needed a rest’ – and that she wanted to admit me to a clinic for a few days.
After finding out my health insurance status would not cover the cost she later changed her mind. She said that I would go home and be assessed by the mental health team at home. It was not easy to garner this information because I was also distressed and exhausted. I am lucky that I have strong language ability and managed to get enough information to understand the basics. I do wonder what would have happened had I been a person who did not have strong language skills. It really is a recipe for disaster.
Poor communication could lead to any number of mistakes. It could lead to the wrong diagnosis and hence prescription of the wrong medication. Lack of communication could also lead to medication being taken wrongly. Or even worse, medication being prescribed that the patient might be allergic to. Indeed Bowen confirms these risks in her paper when she states that there are often, “ …differences in patients understanding of their conditions and compliance with treatment when a language barrier is present.”
After leaving hospital I was told that the mental health team would be visiting my home the next day to carry out a thorough assessment. Naturally I requested that an interpreter be present at this meeting. I was promised that this would be arranged. It was not. In total I was visited by the assessment team and then the mental health nurse three times – An interpreter was never booked for any of these appointments.
During the assessment I again had to rely on my deaf wife for communication support. Medication was prescribed. The possible side effects were explained. Any number of questions were asked about my condition to assist the team with diagnosis and planning of my support. Again I have to ask that if I had been someone without communication support and who did not have a strong language base what might have happened. It is really quite scary.
My experience of depression and the use of medication was relatively short. A friend who is deaf told me that they were in hospital with depression for three and a half months. When one is admitted to hospital for depression there are any number of treatments. Of course there is medication but there are support programs like group counselling, activities and so on. My friend noted that when in hospital there was no way that they could fully participate because interpreters were not provided for any of these activities. She was told an interpreter was too costly.
Indeed if interpreters were provided it was only for a limited time. This meant that for the most part, while in hospital, my friend was extremely isolated. My friend felt quite sure that the reason they took so long to become well again was that the isolation experienced in the hospital actually contributed to the worsening of their depression.
At some mental health type clinics treatment involves the imposition of limited access to social media and the outside world through technology. For the patient who is deaf this can be extremely isolating. For them there is little by way of access to facilities and activities because most of these activities require hearing.
Another friend commented that at the clinic that they attended there was only one communal television. While it had captions they were never turned on. My friend would get up and watch TV after everyone had gone to bed just so that they could get some access to captions. The rest of the day was spent largely alone. The isolation did not assist my friend to get well. It in fact contributed further to their depression.
The recent report from Deaf Victoria showed that in most cases, at most hospitals, people who are deaf rarely get access to interpreters or any communication support. Reliance on family members is common. Whether it is medical or mental health good clear communication at the entry point is essential and throughout treatment. This is particularly so in the area of mental health where treatment is so diverse.
Perhaps as advocates we need to turn our attention to this very important area that is mental health. Developments and improvements in the area of mental health support for patients who are deaf needs to be addressed. Make no mistake, patients who are deaf can be at extreme risk when accessing the mental health support system. Improvements are desperately needed.