Alison sustained a spinal cord injury aged 42 following a fall down her stairs. She completed her PIP application independently and was awarded Standard rate Daily Living and no award for Mobility. She first sought support from Aspire’s Welfare Benefits Advice Service support to review the decision and wanted advice as to whether she had grounds to appeal or met the criteria for Standard Mobility. We believed Alison had grounds and wrote a request for a Mandatory Reconsideration (MR) on her behalf. When this was unsuccessful we supported Alison to lodge an appeal. Her case was reviewed and the original decision overturned. Alison is now receiving PIP at the standard rate for both components.

I sustained my spinal cord injury four years ago. I fell top to bottom on the stairs. I had a moment halfway where I realised my foot wasn’t landing on a floor and I managed to twist but ended up sitting at the bottom of the stairs against the wall. I knew I had done something serious right away; I couldn’t feel or move my legs and the paramedics had to give me plenty of medication to be able to move me onto the stretcher.

My injury is very similar to Cauda Equina Syndrome (CES), but my actual diagnosis was a burst fracture of L2. I didn’t do rehab in a Spinal Injury Centre, I was at my local hospital in Brighton. I went from not walking to learning to walk with crutches in about 3½ weeks. I was lucky in how quickly things moved for me. The slight downside of that is I was too quick for any waiting lists for the Spinal Injury Centres. I was waiting for a bed at Stoke Mandeville and a local centre, but I beat them both out of hospital and was discharged home. This was great but also meant I had to come to grips with all the challenges, such as bowel and bladder management and the additional aspects of living with an SCI, which was a lot to learn by myself. I also had to deal with so many appointments and tests; I went to all kinds of places to really discover what the nature of the injury was. All of that happened while I was in the community as opposed to be coordinated in a Spinal Injury Centre.  

After my injury, I vaguely remember somebody telling me I might not walk again and then my next conversation was with my surgeon talking about the fixation operation that needed to happen asap. I accepted it, as I think I already knew myself that I might not walk again, just from what I could and couldn’t feel. I had a catheter put in and I couldn’t feel that at all, so I knew it was serious. When I look back, I can say that my mental health while I was in hospital was quite amazing; I was very focused and had a lot of support around me. Every day something improved and I got some movement back.

After the first six months the struggle came and the reality of living with a SCI hit home. I am now four years post injury and it is only now that I am fully accepting of every aspect, not just being unable to walk well.

My injury had a huge impact on my friends and family.  One of the big factors was that my family aren’t nearby; they live near Manchester and I live in Brighton. My mum moved in for a few months and my dad and sister would visit often. My partner would walk to the hospital every day. I am very lucky to have their support. I could tell it was really impacting on them emotionally and from my perspective, it is so hard to talk to friends and family because you are just so aware of how upsetting it is for them. But I do think it helped them to see the quick progress I was making and knowing the kind of person that I am.

I am a diversity and inclusion specialist but do mostly leadership/team development and coaching. Luckily, my employment hasn’t changed since my injury. I have managed to keep working and I’m fortunate that Covid has really increased people’s willingness to transfer online which has really helped me as it means I don’t have to travel so much. It’s less difficult and painful working from home. Prior to injury I’d travel a lot, whenever I could; I don’t travel as much now, it’s more complicated. I used to be quite the adventurer; I rode motorbikes, snowboarded and enjoyed horse riding. I miss snowboarding the most nowadays; I used to go a couple times a year. 

Aspire’s Welfare Benefits Advice

I struggled with the PIP application on my own as I didn’t fully understand the framework. I don’t think that did me any favours, but now I understand that I should have asked for help from the beginning.  For anybody that needs your help and is struggling to ask for it (as I did initially because I like to be very independent) I’d highlight that Aspire has the expertise that I, and the majority of people, will never have. To speak to someone has expert knowledge in spinal cord injury is invaluable and should be utilised.

I was briefly a trustee for SIA so I knew about Aspire and someone in a Facebook group recommended I speak to them and your advice was hugely helpful. Everything was really clear and very targeted at the way the system works. You knew what the Department of Work and Pensions (DWP) needed to understand and you knew how to best represent my condition. That was a massive help, and in my opinion, it is not something that can be provided anywhere else.

Your advice was clear and decisive, so it made it much easier to follow your guidance without much worry, I didn’t have to doubt it. There have been times when I haven’t wanted to deal with this or haven’t been able to bring myself to read what the DWP have written about me. The fact that I simply emailed you everything and didn’t have to read any of the paperwork and go through that additional emotional trauma was hugely helpful.

I have never applied for benefits; it took me three years to apply for PIP because I felt really unworthy to have it, for so many reasons, so having a third party with extensive spinal cord injury knowledge really gave me the strength and confidence to go for it.

I’m sure that had I not got in contact with Aspire I would have accepted the original decision. I didn’t have the knowledge, the emotional resilience or even the belief that I was worthy of it and that is where this service really shines. You helped me understand that I was entitled to this.

Had I found the strength to ask for the Mandatory Reconsideration myself, I don’t believe I would have appealed any further to go to tribunal like we had planned. But again, that shows the value of your advice because I trusted you and your knowledge of the system; I was willing to lodge the appeal when you advised to.

It was so useful it was to speak to the same person who knew exactly where my case was at. Things can get lost in organisations, but the service is so organised and reliable despite being so busy.  I also really appreciated the clear written communication; the fact that you always follow our conversations with an email is so useful for people with busy lifestyles. I could forward the information to my partner, read it whenever I wanted and go back to it when I needed to. I appreciated that everything was so informative, clear and direct.

Through the process of this and the many long chats we had, I came to realise how much pain I am in constantly and how none of the seating in my house was comfortable for me. With the extra money from PIP, I have bought new furniture and new cushions to help. It’s enabled me to adapt my environment to suit me.

PIP provides an element of security. I work for myself and I am not in a position right now to be doing extra things for additional income, but what PIP means is while I am trying different medications to help with pain, I don’t have to worry too much if I am only working part time. Having that bit of extra money means I can be more flexible with my working hours and feel ok doing that, to support myself, which is a massive thing, it helps with my mental and physical health.

I never expected the level of emotional support that was provided via a phone. I’d highlight to anyone thinking about accessing the service that you hold our hands through a process that is completely alienating and often demoralising and it makes the world of difference. My partner and I are really appreciative for the help and support.

Welfare Benefits Advice

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