My first visit to Southport Spinal Injury Centre as the Aspire Independent Living advisor was on 15th October 2019.  I hadn’t worked for five years after sustaining my spinal cord injury in September 2014 and I remember being quite nervous.  My husband took a photo of me by the front door, it reminded me of my children’s first day of school photographs.

I decided early on when thinking about going back to work that I’d like to help other people affected by a spinal cord injury to access information and support.  It seemed that after having such a big life changing experience I could put what I’d learnt to use and hopefully help others.  

I’d worked in retail management before my injury and couldn’t see how I could return to such an active role, being on my feet all shift, moving, lifting and carrying things.  However, I knew I could still fulfil the people side of the role, I knew I could help, talk to, support and connect with people, albeit in a different way.

I didn’t complete my rehabilitation in a Spinal Injury Centre, I spent six months in a neurological rehabilitation centre.  As a result, I found accessing specific spinal cord injury information tricky.  

As an inpatient I never met anyone with lived experience of a spinal cord injury, only the other inpatients.  I found a lot of information online, I visited government, health and charity websites and joined social media groups, just to have a bit of a community where I could access support when I needed it.  Looking back, I think I would really have benefited from having someone with lived experience to talk too.  

In my role now I get to talk to patients and their families each week about all things spinal cord injury/illness related.  When I am in Southport, I check in with the case managers and therapy team to see if they know of any patients that want to talk or have any questions, if they recommend anyone, I will head to their bay first off.  If there aren’t any referrals I will visit the gym, therapy room, day room and wards to catch people who want to talk.  Patients might have therapy or visitors so I will make myself available for when they are free.  

There are common topics of conversation such as housing, finances, working, travelling, wheelchairs/ equipment and driving but different people have different things to talk about and I meet everyone at different stages of the rehabilitation journey.  As a result, conversations vary a lot.  No two weeks are ever the same.  I will make referrals to the various services if patients need that but a great deal of my role is just talking to people and providing them with information so they can access the support they need independently.

Additionally, not all conversation led to referrals or sorting big issues out, for instance, one lady was happy to see I could wear jeans as she thought she would only ever wear loose sports clothes.  Its also nice to share tips and tricks about how I manage things, I share information about equipment I use around the house to help with daily activities.

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