I have been a sufferer of Cauda Equina Syndrome for over two years now. Not only have I lost my health, I have lost my career as a hairdresser & beauty therapist, my husband of 18 years and my home. All this, because of a prolapsed disc in my lower back. And it could have been prevented. My symptoms were not recognized in time, were not treated correctly and, even following the eventually discectomy and decompression surgery, I still wasn't diagnosed with CES, at one point I was even told that the fact my bladder & bowel wasn't working was most likely psychosomatic.
Eventually, 9 months after the first of my CES symptoms appeared, I was referred to the Spinal Injuries Unit at the Northern General Hospital (NGH) in Sheffield and diagnosed with Cauda Equina Syndrome. I was so relieved; it wasn't in my head after all. Finally, I started to receive the care that I needed. But I still felt alone, I needed to find other people with CES, people who understood what I was going through. I joined a Facebook group. It was helpful at first, but then it just started to make me angry. The talk in the group was all about late or missed diagnosis, litigation, lack of post-op care or support. It made me realise that the poor care I had received was not exceptional; in fact it seemed frighteningly common. I was lucky, I now had the support of the NGH; a lot of sufferers seemed to be fending for themselves.
So, in October 2011, with the help of my specialist nurse at NGH, I set up the Cauda Equina Syndrome UK Charity. We'd already started a support group at the NGH but I wanted to go nationwide, surely everyone should have access to the right support?
We've only just started on our journey and we know it's going to be a long process, but we've made a great start. We've created leaflets, posters, Alert Awareness cards; we are working on getting more support groups up and running, have recently launched a new website which is an online social network, and we have travelled the country giving talks within the NHS to Health Care Professionals.
I am determined CES will not beat me and I am even more determined to make sure things change.