"100 days admitted to the Spinal Injuries Unit"

I was admitted through emergency late last year and spent most of my time on bed rest. In my opinion, the Spinal Injuries Unit infrastructure is not fit for purpose and should be improved. For example, mixer taps could be installed in all bathrooms to make it accessible to more people. I made use of telehealth before and after my admission.

I was admitted as a private patient but received very few extra benefits besides being given my own room. Free to air TV wasn't available and good food options were limited.

I believe staff should respect patient privacy and confidentiality by not talking about patients when moving throughout the hospital. For example, I feel nurse shift handover should take place in a closed-door room and be followed by a walk around to be introduced to patients. I didn't want to hear about the treatment of other patients and I didn't want my treatment seemingly  shared with other patients.

My psychologists and psychiatrists were great as my mental health deteriorated. I feel more mental health training would benefit other staff including nurses and allied health professionals. For example, I found it helps by changing the language to ask what can be done to help rather than how I am feeling. With little notice and a few days before Christmas, I was told that I was changing rooms after over 90 days in one room and only the junior doctor helped me to redecorate after he found me quite upset.

In my opinion, a rough weekly schedule should be given to help plan each day and look ahead. I had some days where I saw multiple medical professionals. I found this very draining and intense. Care and appointments with allied health and other professionals should continue over the weekend and public holidays. I feel this could help to decrease the amount of time needed in hospital. I was anxious having surgery on a Friday because I wasn't then seen by my specialist CNC until the Monday.

I had some good experiences with nurses and also some not so great experiences that I feel could be improved. It worked well to be introduced at the start of each shift (unless I was asleep) as to who my nurse was for the shift. I appreciated when nurses went above and beyond to listen when I cried and allowed me to be independent were possible too. My buzzer for help was on average responded to after 20 minutes. I liked when I could text or email my team instead. I felt some nurses were reluctant to help and I heard many apparent excuses such as I couldn't be helped during shift handover. For example, I overheard a patient seemingly missed out on being escorted to a medical scan because the nurses were doing handover.

I had some great medical professionals in my team including the junior doctors, CNCs and allied health. I also had great support from my family and friends and appreciated the ease of the COVID restrictions on visitors. My personal support network helped a lot in my care by making sure that my clothes were washed (no laundry on the hospital grounds), I had appropriate food, and entertainment, was showered and received the right care. I felt it was disappointing that my family who travelled from outside of Sydney weren't supported. There were no options for them to stay on hospital grounds (other than beside my bed) and parking costs were expensive.

I recall smoking took place in no-smoking zones by patients and staff. I found this was dangerous and unpleasant. It needed to be greater enforced with fines. I had limited time to be able to go on outdoor spaces but was reluctant due to the smokers and being unable to get out of bed and not feeling confident to ask smokers to obey the laws and not smoke on hospital grounds.

There are only two specific spinal cord injury wards in NSW. I believe more could be done to support the patients, their families and friends, especially of those who had to travel and take time off work. For example, having a laundry on-site for patient and visitor use, volunteers to visit patients to help to pass the time such as playing games or craft activities.