Roman sustained his injury following an illness at the age of 58. Aspire provided assistance to complete his Personal Independence Payment (PIP) review form and he was awarded the Enhanced rate for both the Daily Living and Mobility components.

I didn’t have an accident, I had a spinal cord illness. I developed a cyst on the spinal cord which was complicated by the fact that I had sepsis at the same time. The final diagnosis came after my third stay in hospital. I was in hospital for a few days during my first two admissions, but with the third admission I ended up having emergency surgery and was in Addenbrooke’s hospital for four months.

Roman on his handcycle

After my diagnosis my first question was “will I ever walk again?” I think the answer to that was “maybe” and I think I’ve made remarkable progress. In rehab there was a rapid improvement before things plateaued a little, then lockdown kicked in and I’ve gone backwards a bit, but I’m still optimistic. I know that I will never be able to totally get rid of my wheelchair, but if I can get around with sticks or crutches then I will take that as a win.

I was in hospital for a total of eight months and my wife would come and visit me every day. I was blessed that I had great friends; there wasn’t a single day when I didn’t have a visitor. I was very lucky with the fantastic group I had, everyone rallied around. It got more difficult when I moved to Stoke Mandeville, but I was lucky that I had weekend leave.

My wife would pick me up on a Friday and take me back on Sunday, so I had a change of scene. One of my biggest fears was becoming institutionalized, so I was glad to be able to leave. Coming back home presented a number of challenges. We had to have a ramp put in and, to begin with, I had a bed brought down into our dining room because I obviously couldn’t get up the stairs. But I am fiercely independent, and I like to get things done - I haven’t given into this.

Now, I’m so thankful that I wasn’t in Stoke Mandeville during Covid and lockdown - with no visitors, no access to the gym or hydro pool - because it would have been so much harder without the support. It must be so horrible for any spinal patients during this pandemic, it’s hard to imagine.

Prior to my diagnosis I was a part time fundraiser. I’m a voluntary fundraiser and on the cusp of returning to work. When I was moved from Addenbrookes to Stoke Mandeville, I took part in everything they offered. I took up handcycling which has become a real passion and something I greatly enjoy. I also play badminton in a sports wheelchair against non-disabled people.

Roman on his handcycle

Aspire’s Welfare Benefits Advice

When I was at Stoke Mandeville, there was an Independent Living Advisor from Aspire, Jamie, who used to have a chat with all the patients. I had a number of conversations with him and had a look at the website and found out about their Welfare Benefits Advice Service. Out of a number of different organisations that I approached for assistance, Aspire were the only ones who replied.

I completed my original PIP form when I was at Stoke Mandeville and when the review came around that’s when I got bit of flustered as I couldn’t find the original copy. I was aware that all the questions had to be answered in a specific way and I had to remember things like my worst day. I wanted to make sure I got it right.

Aspire’s advice was fantastic… top, top notch. If you hadn’t have contacted me I would have obviously given it a go, but I could not have completed the form as efficiently without the help I was given, there is no doubt about that.

I was, rightly or wrongly, fearful of being called for the interview (health assessment) because you hear all sorts of stories about how disabled people are rejected all the time and I always thought “oh crumbs, is this going to happen to me?”

Hari, Aspire’s Welfare Benefits Advisor, guided me through how I should look at my daily activities and review them critically. That was a massive help and actually opened my eyes to things that I do just because I have to do them.

My daily activities are a series of problem-solving exercises that somebody without a spinal cord injury doesn’t have to think about.

My NHS physiotherapy stopped because of the pandemic. The extra income from my PIP award contributes to my private physiotherapy because it is not cheap. Nevertheless, it has been essential to maintain what I have already gained so I don’t lose it. My Mobility scheme car also provides me with a great deal of independence.

I tell anyone going through this process to always, always take some professional advice because it is very easy to become unstuck. I would certainly recommend Aspire. 

The main thing I found really useful was the reassurance that was provided. The fact that Hari sent me a draft of the answers was invaluable. I’m sure that had I been called for an assessment or had to appeal Aspire would have been a fantastic source of help and support. Thank you.

Roman in an orange shirt smiling

Welfare Benefits Advice

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