When looking back on my time during my rehab, and immediately after I was discharged from hospital with a very high spinal cord injury, I feel as though I was only directed in help from the SIU. I would say this was limited to in house circumstances where they followed strict protocols confining the information we received only to the minimal equipment and resources the Government offers. There was little if no advice for psychologically dealing with the overwhelming amount of issues we faced regarding adjusting to life outside of hospital. I would have greatly benefited from a mentor or group of mentors who can give the priceless knowledge of their real-life experiences in similar circumstances. Over the past four years since my accident, I would have to say the most valuable help has been outside of Government agencies; where knowledge is not limited by governing rules.
I have really appreciated the professional, yet down to earth advice from the Spinal Home Help (SHH) team. I feel it is very important to be offered knowledge from a broader range of organisations in order for me to explore and assess what is available to me. When you are new to the injury, you don’t know any different so you follow what advice you are given. Upon reflecting at the time during and after my time in rehabilitation, I would have greatly appreciated having more advice on offer, as opposed to only knowing the limited advice from the SIU. What impresses me about SHH is they are promptly available with thorough advice on a level we can relate to; they feel like friends, not institutionalised staff.
I also want to make a point that the existing outreach services DO NOT provide the assistance they promote themselves to, they are always hard to get a hold of and in the disability world, everything is much slower; to have a health care provider to be delayed or non-existent in help is extremely disheartening.
Stacey and Trevor