Boyes Turner is delighted to be able to support the efforts of Allison and Nigel Whitehorn who run a support group for those suffering with Cauda Equina Syndrome. Julie Marsh, Senior Associate Solicitor at Boyes Turner met Allison remotely during the lockdown in 2020. Allison lives with Cauda Equina Syndrome, and for some time now has been offering support to those living with the condition. Allison’s support group has already helped many people living with this condition, offering support and advice on how to manage the pain the condition can cause, and issues around continence and dysfunction that can be hallmarks of the condition. Many people have already found a great deal of mutual support talking to the other members of the support group and have really benefited from talking to others who are often experiencing similar issues as them. Alison Bending, one member of the support group told Julie Marsh: “I had the pleasure of meeting Allison and Nigel on one of the road trip meet ups in August 2021. I had previously taken part in their zoom coffee mornings and was looking forward to meeting up with other local members of the group. I had only met one other person who has CES and we have since become great friends. The group meet up was great - it was good to speak in person to other sufferers and to share ideas, treatments and experiences. I have felt quite isolated at times and it was very reassuring to discuss symptoms and solutions and to see how others managed. I am very grateful to Allison and the group for their support.” Support Group Meetings Since lockdown restrictions have eased, Allison has been travelling across the country, setting up support group meetings for those affected by and living with Cauda Equina Syndrome. Support group member Alison Brown said of her experience: “I attended in meeting that Allison and Nigel organised for Leeds. It was vitally important for me to meet people locally who also had Cauda Equina Syndrome as it is a rare condition and at times you feel like you are the only person who has this.” Another member of the group added: “The reality was that I had never met anyone who had Cauda Equina. I was sent home with no follow up [after my diagnosis]. When the day came it took all my strength to drive there and go in. The sea of people was so welcoming and easy to talk to. Allison chatted to me to put me at ease and I felt welcome. Without the meeting I would never have asked for help or advice and I am so grateful for that.” Robert Mackerill also attended the meeting in Leeds, and said: “After feeling like I was on my own dealing with cauda equina, I found Allison's support group and slowly felt like I was in a caring community…..when the chance came to meet a few people from my area, including Allison in Leeds, I jumped at it. The group afternoon was great getting to hear other people’s stories and feeling I was not alone with any of my symptoms…..we gave each additional support and tips on how to do things. I feel very grateful to Allison and Nigel for doing this…” Red Flags Early recognition of Cauda Equina is essential as, without emergency surgery, permanent disability occurs very quickly after the patient begins to have symptoms. A patient who complains of severe back pain may have other symptoms, which a doctor must check for to be sure that early warnings signs of Cauda Equina are not missed. The signs and symptoms may include altered feeling in the lower limbs, sexual areas, perineum and anus and urinary problems such as incontinence, retention and lack of sensation whilst urinating. Boyes Turner regularly acts for clients who have experienced a delay in diagnosis and treatment for Cauda Equina Syndrome, and as a result are left with life changing injuries. Julie Marsh of Boyes Turner said: “It is fantastic to be able to support Allison and the support group she has established. I know first hand from working with people living with this condition that the impact of it can present in a number of different ways, and on a sliding scale of severity. Some people experience problems with their mobility such that they are confined to a wheelchair, while others have milder symptoms like foot drop which affects their ability to walk very far. Some people experience regular episodes of incontinence, while others suffer very much with urgency but the complications of Cauda Equina Syndrome can have a profound effect on someone’s life.” Support Group Meeting in Bristol – 25 November 2021 Allison’s next support group meeting is due to take place in Cribbs Causeway on 25 November 2021 between 11 am and 2 pm. Anyone who wishes to attend the support group meeting or learn more about the Facebook group or where other support meetings are taking place should contact Allison on the following email: 4llison@live.co.uk
