South & South East – Allison Whitehorn

Allison Whitehorn – Peer Support Champion South & South East


Hello, I’m Allison, and live with my husband Nigel, on the South coast. I am the Peer Support Champion for Southern and South East England.

I have 2 daughters and 2 grandchildren. I was a nurse for many years in general hospital, which included mental health and cancer. I was particularly drawn to cancer nursing, as found it was a lot of palliative care. Whilst there I also did counselling courses in relation to loss and bereavement to supporting and helping families. Also, I have undertaken courses in mental health and other medical subjects. I have worked in accounts at a school, and then an exams officer at large secondary school /6th form.

I have had my Cauda Equina Syndrome since November 2014. It was never explained to me. I was sent home within 24 hours of the surgery with no bladder or bowels sorted and numbness. After struggling through with no aftercare or rehab, I was concerned why I wasn’t improving, but getting more issues from the cauda equina. I noticed my legs were getting weaker and I was unable to stand more than a few minutes at any time, with intense pain in my back it was almost to the point of collapsing.

Over the year I became unable to walk or stand so I had to find answers. Looking on the internet I saw information to my symptoms. They sounded like I had a spinal cord injury? I spoke to someone and they sent someone to visit me. It was explained what cauda equina was. They in turn referred me to a spinal unit as an outpatient where the community nurse from the unit came to visit me at home.

In 2018 I discovered the Cauda Equina Syndrome Support group. I found answers and being able to chat to others in similar position was a big turning point. I wasn’t alone. Everyone there understood me. I enjoyed meeting other cauda equina members and knowing I wasn’t alone, or mad! As medical consultants looked at me as if I had grown another head! When explaining my symptoms. I have spent most days since, after knowing what cauda equina is, studying it and understanding the different nerves it effects and symptoms associated with it. Really reading up on everything I can get my hands on.

I am passionate about Cauda Equina Champions Charity. This will make such a big difference to anyone and their family and friends now and in the future. We shall move forward with the charity on a journey where we hope to one day see more awareness and pathways for all effected by cauda equina. Hopefully no one else will going through the fog looking for answers as I did. Support was all we needed and it wasn’t there for me. I want to ensure it’s there for everyone in the future.

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