About five years prior to the operation I lost my proprioception. I walked across a pub, ordered a diet coke, turned round and couldn’t let go of the bar. I staggered back to the table and couldn’t even stand up. Someone helped me back to the car and I was fine again. Over time these episodes got worse and then my legs started giving up. 

An MRI scan of my head came back clear and I had a back MRI but it didn’t cover my whole spine, so that was clear too. Things became progressively worse; I could hardly stand or walk. Through my insurance I saw a private consultant and he ordered an MRI of my whole spine. They found a spinal tumour and I was told it was very aggressive and growing fast and that I needed an operation as soon as possible. 

Because it was during Covid when operations were being cancelled, I decided to pay for it privately. They operated at T10-T12, but the tumour was very large and stuck. They managed to remove most of it but there was permanent spinal cord damage. 

I was very lucky. They transferred me straight to an NHS hospital from the private hospital. My consultant was brilliant and straight away he said that he would get me into Stanmore Spinal Injury Centre. Within 10 days I was transferred and spent three months there and learnt that rehab was part of the process to get home. 

I couldn’t have any visitors because of Covid. My children eventually got to visit towards the end, but I hadn’t thought about the impact on them. They were seeing me in a wheelchair for the first time and I hadn’t acknowledged how difficult that must have been. It would have been so much better for everyone if my family had the opportunity to come and see me after the operation, and we got the news together. 

It's only when I got home, and I thought, “oh my god, they’ve had a phone call to say that they’re mother is never going to walk again”. It must have been so difficult, but they are absolutely brilliant and so supportive. 

Work

I had been working full time as a Deputy Head Teacher in a primary school for many years.  After the operation, I returned to work full time, as a Special Educational Needs Coordinator. There were lots of adaptions made to the building for me and my employer was generally supportive but my health was getting me down and I was off sick for a while before deciding to resign. Before my operation I was the ‘go to’ person at work for absolutely everything. When I returned following my spinal injury I didn’t feel like I was a good fit amongst a new team that had been established while I was off recovering, who had worked together and bonded through Covid.  I was no longer the ‘go to’ and I struggled with that; I didn’t feel that I was good at my job and in the end I decided it was best for me to leave. 

I will soon be starting a new role as an EHCP Coordinator. Going for that interview and being told “we’d like to employ you” has been a really good confidence boost and the first time in four years that I’ve felt like I can do my job.  

I’ve realised that it may be a different, more positive experience in a new place of work. My old workplace had to adapt to this ‘new’ me as a wheelchair user, but for this job I have been employed as a wheelchair user, someone with a disability. So, I think that creates a different way of thinking and approach straight away. 

Help from Aspire

One of the first things that hit me was “how am I going to get back to work or pay bills?” I had used my rainy-day nest egg on the operation, my savings were low, and I was worried about money. My case manager put me in touch with Aspire. I remember first having a chat about benefits and then being helped with my Personal Independence Payment (PIP) form and then the review. It’s a great help. They completed both forms for me, I didn’t have to stress or worry about it. 

Having never needed to look at benefits, it was nice to have someone available to get things moving for me. There is so much information out there that it’s overwhelming. To be able to talk to them, explain my situation and then be given tailored, expert knowledge is so much easier than trawling through all the information and filtering the misinformation, too. 

It’s so nice to have a conversation where the advice is relevant and correct. It is beyond helpful and made a real difference. It’s nice to speak to someone who knows what I am talking about, who knows I am not exaggerating.

I can’t fault the service in any way. There is no fault in the process, the advice, reliability or punctuality. I have to say how much I have appreciated being listened to properly. They really listened to what I have to say, give me time and don’t make assumptions or rush me. I have always felt fully supported. I felt less alone and appreciate all you have done. 

Someone said to me ages ago that once you’re with Aspire and the Stanmore Spinal Injury Centre, you’ll always get support. That’s so true. When my PIP came around the second time I was feeling dread, but I emailed to ask for help again and the response was “of course we can”. That’s so reassuring, knowing I can contact Aspire anytime.

I am using Access to Work to travel to work, which pays 90% of the taxi fee and I use my PIP payment to meet the remaining 10%. PIP also pays for my daily care visit and weekly physio sessions. PIP does help.

Welfare Benefits Advice

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