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.

Regards,

Stacey and Trevor

Hi my name is Patrick Dillon and I have acquired Spinal Cord Injury which I sustained 10 years ago, and confined me to a wheelchair. My spinal cord injury was due to swinging off a rope into a shallow creek where I broke C4, C5 and C6, which resulted in the loss of movement from the shoulders down. I spent up to 2 years in hospital rehabilitating back into conventional life and society, and then moved into my sister’s house as my home modifications had not yet been completed. Six months later after my own modifications were complete at my parents’ house, I moved home. It took me at least two years to adjust to home life and also back into society, I also had to try to source different types of technology to help assist me in home life and develop my independence.

I was guided by the Spinal Outreach Team (Spot) and Power Mobility on various tech solutions and home support, but due to the number of people sourcing These organisations, sometimes their resources are stretched and things can take a little longer than expected. In saying that though the help received from these organisations was beneficial and help me achieve many things such as study and work which has been a huge contribution to my independence. This process (even though very rewarding to my independence) took many years of time and effort constantly sourcing technology information, medical information and other various sources of knowledge which has been extremely beneficial to achieving many goals and living independently.

I wanted to share my story and experiences with other people with disabilities and provide them with information regarding technology, home living, transport, studying, home care, and even work and found an organisation who shares this passion, Spinal Home Help. Spinal Home Help has a group of peer mentors with similar disabilities, but different stories and experiences which once shared with other clients and patients could be very beneficial to their recovery, and I believe easily shorten their adjustment time to home life and independence. Some of the ideas from Malakai and the team are from people who have been through the same situation and have had similar feelings and can relate to a lot of their struggles. I’m pretty sure if I had this type of support when I was fresh in hospital, I believe I would be where I am now a lot earlier without the months of anxiety, depression and fear for myself and of course my family. This organisation understands not only for the client but for the families and loved ones involved on how traumatic this experience can be. Spinal Home Help supports families and clients and future projects such as the Spinal Home Help TRP/Support Facility would be highly recommended in supporting hospital clients, clients transitioning into home or just clients and families that need support or information to help them in day-to-day life.

I was a patient at the P.A. Spinal Unit for almost 13 months, from late 2003 – early 2005, about a month after arriving in QLD from NZ, as a 17 year old. My dad lived at Tambourine Village at the time and as my dad’s address was more 50 kilometres away and I was in a long term ward, we were eligible for a weekly rental allowance.

We were fortunate enough to find a small one bedroom unit that was walking distance from the P.A. & no more than the $200 a week allowance. This allowed for my step sister to stay in Brisbane during the week & spend the day with me and my family could come up​ on the weekend to visit; sometimes they would take​ me to South Bank.

The first moment I felt somewhat normal after my accident, I was sitting on the couch watching TV and eating dinner with my family on a Sunday evening in that unit. This unit also allowed for my mum to come up from Sydney for a few days at a time, throughout the year; her husband is an​ interstate truck driver, and each time would bring up one of my younger siblings with them for the visit (the youngest of whom only being 1). This not only allowed me time with my mum but gave my step sister and family some respite from weekly trips into the city.

I can speak from experience that there are many benefits of having a centre like the one being proposed. Over time everyone becomes like an extended family in the Spinal Unit; my step sister became friends with and helped most of us patients in there, and if my family went out for dinner we would often be joined by another patient whose family lived further away. It’s​ as though our families were coming in to visit us all. Having my family around constantly helped me to not focus on what I was missing back in NZ and what would have been my final year of high school.

Despite being isolated from my schoolmates, I always had visitors, thanks to our luck in acquiring that unit. It’s easy to become insulated in the Spinal Unit, so being able to get out and about at the earliest opportunity prepared me for the challenges one must face in the community, hitting curbs and falling, the difference in the way people treat you now etc. I heard of too many people hitting the wall once they got home as they had been led to believe that things would go back to normal once home, but eventually you become old news.

I could have benefited from a centre whilst I was living out at Tambourine Village, as the lack of public transportation there made getting out difficult and resulted in many late night drives back from concerts and sporting events. There are many already in the community who rely on Support workers to put them to bed, and rarely stay up past 10 30pm as a result, which is sad when you consider the age range of most people with a SCI is 16 – 32. A centre like the one being proposed by Spinal Home Help, will provide ongoing benefits for people with a Spinal Cord Injury, from the time they’re in the SIU, to those first few months at home and beyond.

~ Paul

As people know I am a support worker and have worked in the transition house at Newmarket with a lot of families and I have found it incredibly beneficial as we also get an opportunity to help the clients when difficult/ different situations arise . We can listen and also if needed offer alternative choices , see first hand the way they and their families are interacting and be supportive. Both the clients and their families and friends are going through a change in their lives and need time to adjust and work though different scenarios. Sometimes help is not necessary needed or helpful and there is guilt and confusion grieving and anger. Being in a neutral environment with qualified staff and support networks can help work though issues before the added stress going home .

I was admitted to the spinal unit in September 2006 which was terrifying for and daunting not knowing what the outcome of my rehab would be. I was lucky my immediate family lived locally only a twenty minute drive away, therefore have their support daily. My wife came in every morning to support and encourage me through physio and occupational therapy and I seen my kids every afternoon after school, I could not have through this without their support. Other patients that did not live locally their family and loved ones only visited for a couple days at a time once a week or fortnight due to the travel distance and expensive hotels. You could see they missed their family and loved ones and would withdraw from therapies sometimes, and in some cases depression and relationship breakdowns.

Once I was well enough I started going home on weekends to a non-wheelchair accessible house that was not ideal for a quadriplegic. Very testing the first couple times and I would not have continued if I did not have the support for the right mindset. I know other patients did not leave the hospital until they were discharged. Was spending most weekends at home and over the Christmas break spent twenty days at home with the help and support from work cover Queensland.

The time of discharge my transition from spinal unit to home was relatively smooth as I had already been doing it every weekend. However other patients had to go into transitional homes for a couple of weeks and this was very daunting as they had not been going home on weekends, to go from 24-hour nursing support in the spinal unit 6 hours of care a day and family having to do the rest was a very daunting thought for most patients.

However if there was a centre what spinal home help is proposing it would firstly provide affordable accommodation for the families to stay while a love ones are in the spinal unit and secondly it would provide a safe modified unit that all spinal patients would have access to for weekends and short periods to get used life in the community again. And lastly both family and patients would have the support of spinal home help staff and mentors for any information or just someone to talk to that is already travel this road

I was admitted to the Spinal Injuries Unit of the PA Hospital after 4 weeks in ICU. The adjustment to the Spinal Unit after ICU was already very difficult and once my rehabilitation started it opened up quite a terrifying world for me. While I was in ICU my wife had to stay in a university dorm which was both uncomfortable and expensive but was the only place close enough to the hospital and still expensive, even though it was the cheapest available at just over $600 per week, Once I was transferred to the PA hospital my wife was able to stay with family close to the hospital. If it were not for that she would not have been able to be with me during my rehabilitation. Her encouragement and just being there during my physiotherapy and occupational therapy sessions did wonders for my motivation and emotional support. How other patients whose loved ones could only visit them occasionally coped with the emotional demands of a spinal injury is beyond me. I saw many other patients suffer depression caused by the separation of them from their families and loved ones that I was fortunate enough to avoid because my wife was close all the time.

When I was strong enough to go out for weekends, I had nowhere to go that was wheelchair accessible. My wife and I spent one night in a wheelchair accessible hotel room close to the hospital. It was, however, not comfortable and not as accessible as advertised. I had to return to the hospital early in order to be able to shower and toilet. When I was discharged and we moved into a wheelchair accessible unit we still experienced a lot of issues that we were not prepared for. It was not easy to adjust to an environment where suddenly I had only 2 hours care per day and my wife had to do a lot of tasks that we were used to having done by hospital staff during the seven months I was in hospital.

When you spend such a long time in a ward, adjusting to normal living is very difficult and much harder than we anticipated. It took an emotional and psychology toll for the first few month until we got used to life outside the ward and found ways to deal with difficulties not experienced on the ward.

A support centre that is envisaged by Spinal Home Help will go a long way to provide affordable accommodation for families and a safe place for a the person with the spinal cord injury to stay on weekends get used to life in the community again. It would also afford the opportunity to learn from people who have already travelled this road before which will make adjustment to life outside the hospital much easier. Many patients become so institutionalised after being on the ward for such long periods of time, that leaving the security of the hospital becomes frightening. A support centre where they can get used to not being in hospital for shorter periods of time will help that transition from hospital to home.

Thank you for briefing me on your initiative in working towards the establishment of the Home Support Centre and in particular quality lifestyle accommodation and mentor services for rural Queenslanders that incur quadriplegia and paraplegia, and are required to spend significant time and expense to reside close to the Brisbane Spinal Injury Unit prior to being able to return home and on subsequent visits.

Their ongoing support needs and nurturing once they return to their country homes is critical to their successful adaption to the challenges imposed by their disability and remote location. It is also critical to their capacity to remain at home and not constantly return to the Brisbane Spinal Injury Unit for further care due to ongoing medical complications.

When I was shot and became a paraplegic 64 years ago in country NSW there was no spinal injury units so I spent 12 moths in the Royal Prince Alfred Hospital in an adult ward where there was no understanding of management of my condition. I was sent home with no after care, no social security, a house that was not wheelchair accessible and no mentoring or support services. Many of the physical complications that I am experiencing today could have been avoided had I received support and nurturing from people that had spinal cord injury and learnt from their experiences.

I fully support the initiatives of Spinal Home Help and the accommodation facilities they are planning to provide. I have met, over the years, many guys and girls form the country that have experienced life changing and challenging spinal cord injury. The quality of their lives and their outlook on their futures would be significantly improved by the availability of the nurturing and support services proposed. Also, the ongoing costs to the government as a result of complications resulting from lack of adequate support and knowledge in managing their condition would be significantly reduced.

Yours faithfully,

Tony

My husband Lourens was in the Spinal Unit of the PA Hospital for approximately 7 months.  During this time I had to leave our home and move to Brisbane to be closer to the hospital in order to be an active part of my husbands recovery and rehabilitation.  Many of the wives I met whose husbands were also in the Spinal Unit were not local to the Brisbane area.  This meant that they had long distances to travel and were only able to be with their loved one for a couple of days at a time.  When someone is hit with a spinal cord injury, the toll it takes it more than just that person.  Loved ones have a great amount of stress to deal with and the added stress of not being able to afford to be near their loved one, I believe, contributes to the breakdown of relationships.

While I was fortunate that I had family close by that I was able to stay with, their home was not accessible for my husband.  This meant that once the time had come where he had rehabilitated enough to be able to go out for weekends, we could not as we did not have anywhere accessible we could go.

One weekend, we booked into a hotel close by the hospital that was accessible.  This was both expensive and a complete disaster.  The experience was so horrible that we never tried it again.  Although the accommodation was relatively accessible, we were not prepared for the coping with the things that needed to be done.  With showering, and toileting being a giant hurdle as we suddenly found no nurses to assist, and no hospital bed to adjust.  The morning could not come fast enough and the realisation that this was to be our normal life was terrifying.

By the time of my husband’s discharge, we thought our previous experience had given us some idea of the problems we may need to sort out.  However, this was not the case.  Within two weeks of discharge, we were exhausted, discouraged and found little help to guide us through.

I believe, had there been a place like that being proposed by Spinal Home Help, early life after discharge would have been much easier.  We would have had the support of those in the same boat as we were, and more importantly, the knowledge and troubleshooting of those who had gone before us to fall back on.  We would have been able to spend time in a home setting, and iron out difficulties while my husband was still on-ward and under the care of nursing staff.  Weekend practice so to speak.  This would have made an entire world of difference.

Vaughan from spinal home help introduced himself early in April, and has visited me at the unit once a week since. Vaughan has supported me in many ways both on a personal level and hands-on. He is more than willing to talk open and honestly about his experiences since he has been in a wheelchair.

Vaughan has arranged to take me to a couple of events here in Brisbane, which has given me the confidence to participate in so much more and remind me that being in a chair doesn’t stop me from achieving anything. Vaughan and spinal home help has helped sourced any information I have needed like care providers, home modifications and so on.

Just talking with him and getting to know him, has made me consider many things I would not have otherwise.