By Fiona Woods
The NPC is planning to draft a policy dealing with interactions between people who are blind or vision impaired and the healthcare system. We receive healthcare from many different types of providers, and our interactions take many forms. Additionally, of course, each of us brings our unique needs and circumstances to our interactions. The NPC is a body of elected representatives from the states and ACT, as well as members of the Board. We each represent much more than our own lived experience, but recently, I feel my life has been a sampler of the issues our healthcare policy will need to grapple with.
It started with me deciding to be responsible and organise all the regular check-ups women are encouraged to have. After my blood tests, someone else had to sight the bottles to confirm that the blood which had just left my arm was indeed mine. When I rang to book a mammogram, I was asked for my reference number. When I said I couldn’t read it, the receptionist suggested I find my glasses. I explained this would not help, as I was totally blind. She was slightly shamefaced when I arrived for my appointment.
I then had to disclose all sorts of private information to her in her waiting room, so that she could complete the necessary forms. The only alternative was the assistance of my friend who had come with me to the shopping centre where the tests were conducted.
I left the bowel cancer screening kit I had received as a birthday gift in the cupboard. Asking my husband to help me with all the tubes and trays seemed too much at the time. The results of my tests were communicated to me in print, although the processing of the results is all electronic. Privacy is constantly raised as an issue with email, as though placing a letter in a box open to the street is totally secure. All my results were normal, and I felt confident my contact with the healthcare system was over until the next time I felt conscientious.
Soon after these events, my family’s contact with hospitals intensified. We had day surgery to remove wisdom teeth, emergency surgery for myself and a heart operation for my husband.
There were different admission procedures with each. One was online, but another required completion of a form which had to be physically delivered to the hospital. The hospitals could be reached by irregular buses, but all were built over many stages and difficult to navigate, even with full sight.
I attended a pre-admission meeting, where I tried to clarify my needs as my husband’s carer after his surgery. He was still sent home with me needing to organise medication, pathology and a visit to a general practitioner at short notice on the Easter weekend and with no driver in the household. I discovered that about half of his medicines had braille labels on their boxes. There is a lot of information about side-effects and contraindications online, which I sourced myself. Some of it is reliable.
Throughout our preparations and recovery, there were scans, consent forms and reports, all presented as printed documents and inaccessible to me. Often these were discussed with lots of other people around us. My own specialist emailed me with his treatment recommendations within thirty minutes of our appointment. The heart surgeon had a 3D model of a heart and a sample replacement valve so that I could make sense of what he was explaining. Accommodations can be made, with a small amount of effort and imagination, but they so often are not.
I spent time in two hospitals. In the first, I was wheeled into a large room in the middle of the night, not knowing who else was present and with no idea where anything was but the call button. It seemed impossible to explain that I needed help with simple tasks, not because I was blind, but because I was extremely unwell. My family and sometimes other patients helped me sort out what was on my food tray. Staff were overworked and saw any request for assistance as burdensome.
In the second hospital, staff routinely introduced themselves, assisted me to choose from menus and informed a nurse when I was likely to need help with meals. People went out of their way to reassure me my needs were not unreasonable and could be met. How we are treated in hospital should not be a matter of luck.
Wondering how our disability will be regarded should not be one of our major anxieties upon admission. Few people are at their best when they are attending a hospital they don’t work at, whether as a patient or a visitor. Even if you are there for the joyous event of a birth, there are uncertainties, and new skills to master. Violence and abuse aside, how we are treated as people who are blind or vision impaired should not depend on how compliant or pleasant we are as patients, or how competent or confident we are with our disability.
All this necessitated a huge amount of organisation and resources, in addition to the normal family interactions with the healthcare system. There were immunisations at school, special circumstances forms for educational institutions, mental health plans, appointments, referrals and endless invoices, receipts and claims to process. Very few elements of the healthcare system are prepared to divulge their email addresses. There are good reasons for this, but should they always override our right to access information about ourselves? Some information about services and procedures can now be found online, but we know that many people who are blind or vision impaired are unable to access them. It is seldom possible to speak personally to medical professionals over the phone. It is to be hoped that My Health Record can resolve some of these issues, but only if it is used correctly and we have access to it.
After all this had happened to my family, when the NPC started working on the healthcare policy, I discovered that there is a charter of healthcare rights. No doubt there were posters promoting it in many of the places I had been, possibly even some pamphlets referring to a website. The NPC has decided to use the headings from the charter as the basis for BCA’s new policy. The charter is being redrafted, but the current names of the rights we are all entitled to are: access, safety, respect, partnership, information, privacy and to give feedback. For more information about the charter, you can visit www.safetyandquality.gov.au/rights.
For people who are blind or vision impaired, these rights will require specific considerations. For example, “access” will require physical access to the built environment, plus access to information in a range of formats. The NPC is currently working on identifying the factors essential to us exercising our rights.
My story is not especially unusual or dramatic. I have no other disabilities, I have spoken English all my life, my vision is extremely stable, I have sufficient financial resources and I have many years of education. Many people face much greater obstacles in navigating the healthcare system. No doubt some of you have much worse stories to tell. I am sure most of you will have experienced variations of what I have recounted here. If you have thoughts on what the NPC’s updated healthcare policy should include, please send us an email, or get in touch with our talented new policy officer, Jane Britt.