Educating for Physical Disability and Health
This was first published on the Physical Disability Australia website where I am a director. Such an important ongoing issue I felt it was necessary to revisit this space as I was readmitted to hospital a fortnight ago and the cat scan and hovermat and bed height issues again were a major source of misunderstanding and major difficulty.
My ongoing health journey and the importance of understanding disability and health especially in these covid times. Accessing the equipment necessary for diagnosis and treatment is essential and when you can not get onto the CAT Scan bed this is a major problem. We have to make it work. We have to ensure equipment is accessible and suits everybody. We also need to be educated about how we can adapt situations and support people with high level complex physical disability.
I thought I might share with you some of the snapshots and issues that arose and had to be explored over the past two years of my life and health journey. I also thought I could look at some of the specific problems that arose and some interesting solutions that I found existed.
I should let you know that I am now back at home and easing back into work after spending many months in and out of hospital with septic shock of my kidney again. I thought at the start of the crisis I was going so well avoiding having to go to doctors and mostly self quarantining and then I was rushed to hospital in Toowoomba and got to experience the covid-19 environment first hand and from a disability perspective and a personal perspective as well! All the zoom and team sessions I had been participating in all came together to help me in surviving those many weeks in hospital with my family and carers, helping in every area and watching everything that was done.
There were some interesting discussions and a variety of outcomes and some massive gaps in disability care and attitude and understanding. The doctors were good and some of the nurses tried very hard to understand disability, but even they really were learning as we went along . This area needs so much education about all areas of disability and life. There were issues with space, equipment, and attitudes. There was no real understanding about how illness and physical disability and the actual hospital space could work well. There was no room for my equipment and hoists and slings and shower chair that made my life work were just seen as an inconvenience that and something that took up valuable space.
Assumptions were made about my ability to make choices and because I have very complex disability needs I required a lot of flexibility with all of these things. My family and carers were sometimes asked inappropriate questions about my choices and why I needed certain equipment or certain medications. I was highly allergic to one such medicine and it was only because of a carer and my own surveillance of the process that it was stopped immediately and there were no major issues that arose. There was no knowledge about how the equipment and using or accessing CAT scans or X-Ray worked. Even medical choices I made were questioned because attitudes of some staff were condescending and misinformed about physical disability in particular. They also thought because I was so close to death that they should just make every decision and I should not question it or how they did it. This did not work because they did not understand disability and also jumped to conclusions about what would be best according to their way of thinking. This put my actual care and recovery in real jeopardy many times. Issues of medication and very limited time frames for actual survival also compounded the situation.
Once I started improving I was trying to engage staff in every way I could and involve them to even understand hoisting, stomas, shower and skin care and overall attitude. A massive task and really lacking across every area. I believe disability awareness has to be built into all university training courses across all areas of health. Hospital was accommodating, in most cases, but if I didn’t know my rights and also if I hadn’t planned and didn’t have the ability with sepsis to communicate my needs the stay would have been impossible. I am so lucky I came out of hospital before Toowoomba became a hotspot. I would not have been able to have my family support and care team that helped make everything possible and my care safe and doable.
As a person with high level complex disability and specific needs with care I thought I knew the policies and way things could be done to ensure best practice and great outcomes. What I saw was huge gaps in education, awareness and attitude at every level. I could not get on to the CAT scan bed with my hoist and two carers helping, as well as the Radiology staff. I only had a very small window of time to live so the process had to done as fast and carefully as possible. I was relying on my two carers to show them my documented plan and use my hoist and also to ensure I wasn’t rolled or moved in any way to damage my neck and spinal cord. Surrounded by wardies and the X ray staff my carers literally had to frequently remind them of my unstable spine issue so they wouldn’t roll me. The hoist wouldn’t fit under the cat scan bed, even though it was a new one, so they really didn’t know what to do. Vital minutes were ticking away.
They then remembered they had a new piece of equipment – a hover mat that they could use. I could have CAT Scan and they could be done easily and safely. This took the pressure off the Radiology team and my often very short health requirements. If I could not have the scan we could not progress to the next stage of medical help. This piece of equipment is lifechanging for people who cannot transfer any other way onto a CAT scan bed or a X-Ray bed. It literally is like a hover craft that inflates from your bed and moves you across to the other space. It takes about five minutes in total and you are secured and safe. The only requirement is that the staff at the center know that it exists, first of all, and how to use it speedily and safely. I was so lucky that this was purchased by the hospital and that there were some staff who knew it existed. There was a team who worked together with my complex physical disability and high level sepsis that actually inflated the hover mat and moved me across to the CAT scan to actually perform the scan in enough time to ensure the next stage of medical treatment could continue. This piece of equipment is a life saver and we need to advertise the fact it should be available in every hospital.
This was the first of many issues with equipment access and space. I only know that I would not be here if it wasn’t for some doctors and nurses who knew about disability equipment and support and also how to communicate and understand a person with high level disability and high level sepsis. It also needs to be said that without my carers and family helping with my advocacy and care this supportive situation would not have been possible. I might not want to say this and I believe I am very strong in this area, but when you are at your weakest you need plans and support to ensure best outcomes for recovery and survival. You also need equipment that enables you to get the required diagnosis and ensure that your situation is supported and your other areas of health are not damaged in any way.
The new hover mat if a essential piece of equipment that makes the other essential areas of health such as cat scan, MRIs and X-Ray beds work for individuals who in the past could not access this safely and effectively. These type of innovation in the health sphere need to be celebrated and the information shared across all of our disability communities. There is constant research and equipment being developed and we need to push for more of this and also share our good news stories about how things work and when they don’t we need to question how we can have a solution created. I will post a short video about the hover mat and how it works soon so everyone can see how amazing it performs its task.
I have now recovered and am currently back at home and hoping that I stay healthy and can keep up my current workload. I am enjoying working with the Independent Advisory Council and my many other disability groups I work with. I never believed I would be actually giving lectures and zoom sessions about a first hand experience of life with disability in the covid-19 environment. (Some of them were very first hand, still being in hospital.)
It is so important to create positive change across health and especially for people with disability. There are many attitudes that need to be changed and also many disability issues to be explored and educated about. We need to continue to ask how we can make this health area more inclusive and more understood. We all have certain needs and things that impacts in this space because of our disability. We need to break down barrier and create conversations so when we are at our weakest and most vulnerable the people who are tasked with our health recovery understand what they are dealing with and how they can help make life better for both sides. There was some very scary moments and without my support my recovery wouldn’t have been as smooth as it was able to be.