I was incredibly active and still working well into my 60s. I had been a medical rep for years within wound care and neurology. I loved my job and worked until I had no choice but to stop.  

I started using a wheelchair around two years ago. I had a spinal cavernoma in 2006, I recovered relatively well and managed for around 10 years, but then I slowly started having problems with walking, my legs and ankles. I had lots of falls. It was investigated but nobody really knew what was happening or why I had a sudden onset of worsening symptoms. An MRI showed scaring and damage to my spinal cord. I was diagnosed with Syringomyelia soon after. 

Then, in 2020, just before the lockdown, I had a spinal shunt placed to drain the excess fluid in my spine to help with nerve pain and neuropathy. I wasn’t happy with just being left to deal with things, I felt like more could be done. Through my own research, I found a spinal surgeon associated with the Royal National Orthopaedic Hospital in Stanmore who specialised in Syringomyelia. I saw him privately initially but eventually I was referred to the Spinal Injury Centre in Stanmore for a review and then I was offered a period of rehab which really helped.  

I think my experience was a little different to most people there. A lot of people had just arrived and were starting to use wheelchair whereas I had already been using a wheelchair for some time. I found myself spending time telling people I met all about what my husband and I get up to in and around London: that life does go on outside and that it will be ok for them too. 

Lindsay, Aspire’s Independent Living Advisor, came over to talk about Aspire and what support there is. I had told her that I would like my Attendance Allowance claim reviewed but had been refused and she referred me to Aspire’s Welfare Benefits Advice team.

I had tried to do a review myself because I thought I was entitled to the higher rate, but I was turned down. I learnt as much as I could about my condition and thought I was quite good at filling in forms, especially as I had got Attendance Allowance (at the lower rate) myself with no problems. But getting the higher rate was proving difficult and I wasn’t very hopeful when they said it was worth trying again. 

I think the main difference is Michelle at Aspire knew exactly what way to phrase the answers and included things that I may have forgotten, or thought weren’t relevant. This obviously made all the difference as my condition hadn’t changed but I had been turned down when I did it myself. I also wasn’t called for a phone interview this time which I think also proves how well the form was completed. 

Aspire’s advice was amazing, absolutely amazing! You sometimes feel like you’re the only person going through this. Especially someone like me who has a condition rather than an injury or accident, so it took a long time to get rehab.  It is really good to talk to people that have such good experience with benefits. I would totally recommend the service.

I pay for my own care and physio which is very expensive. The extra money will certainly help with all of that. I am relieved and very grateful for all the help. 

Welfare Benefits Advice

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