By: 22 September 2014

Ann Glover, Founder and Chair Trustee of Cauda Equina Syndrome (CES) UK Charity

Q  What is your position in Cauda Equina Syndrome UK Charity and what does your role entail?

A I am the Founder and Chair Trustee of CES UK Charity, the UK’s first registered charity dedicated to raising awareness of Cauda Equina Syndrome and improving the care pathway for patients from diagnosis for life. Since being diagnosed with CES in 2010 my life has changed completely. My journey has not been an easy one and has been made even more difficult by a lack of appropriate information and support. I was also very disturbed to learn that the poor care I had received was not exceptional, and that many people with CES are struggling to cope with the condition and their everyday lives

In October 2011, I set up the national charity that was registered with the charity commission in June 2012. I am fortunate to have the support of my fellow trustees – Specialist Urology Nurse, Paula Muter, from The Princess Royal Spinal Injury & Neuro-rehabilitation Centre in Sheffield, and Michelle Hughes, a fellow sufferer from Leicestershire. We offer support to all those people struggling with the consequences of CES and their families and carers. This includes information and guidance on mobility, bladder and bowel issues, sexual dysfunction and emotional and relationship issues. Cauda Equina Syndrome can strike anyone at any time and our vision is that everyone diagnosed with CES has access to quality information, informed advice and guidance, and appropriate care and support.

Q From a patient’s perspective, tell us more about CES

A It’s very difficult to describe what it is like to live with CES. Only another person who has the condition can truly understand how unpredictable it is. For instance, my right leg is numb but I have constant neuropathic pain through my bottom and down the leg into my right foot, which sounds contradictory. I’m on a lot of medication but that just dampens the pain, which never goes away. It seems to take forever to do the things I used to take for granted; just to get up in the morning is really quite painful, I have to take my medication and then wait for half an hour before I can get out of bed. I have to catheterise my bladder and my bowels. Although I have a carer who helps me shower and wash my hair, the whole process of simply getting up always leaves me exhausted. Some days I cannot get out of bed at all.

Unfortunately, for me, things have got progressively worse since my surgery. I have needed to have Botox injected into my bladder to deal with increasing incontinence. Having been on crutches for three years I have repetitive strain injury in both my arms and three slipped discs in my neck, which require surgery, and I regularly use an electric wheelchair.

I have to plan everything; all spontaneity in life has gone. Like many other people affected by CES, I suffer with bouts of depression and the psychological impact has been quite intense. I often wonder what life holds for me as I get older. You only have to read the forum on our website to see how many people are struggling to cope with CES. Although symptoms and issues do vary between patients, the condition is always life changing.

Q The charity’s mission is to provide support for people with CES and to help educate and provide practical advice to both healthcare professionals and patients, how do you achieve this?

A For healthcare professionals, the charity has been invited to give talks to a variety of NHS Trust groups across the UK. Because we present from the patient’s perspective, HCPs get to understand what it’s really like to experience CES on a day-to-day basis, which will feed into improved standards of care when they treat and advise patients. We intend to become CPD accredited in the near future, giving us greater opportunity to reach out to a wider NHS audience.

In our efforts to be the place to go for accurate information on CES, the charity website holds a wide variety of medical, legal and practical information, given to us by subject matter experts. We intend to work with the NHS to continually build on this and become a central database for the latest research and developments on the condition.
For patients, our Online Community Network launched in February 2013, is an interactive website where members can chat freely to each other about the issues they face. Every member has their own profile, they can create social groups, make friends and exchange stories, arrange events and more.

For many members the network has been a lifeline, particularly as they often leave hospital having been told how rare CES is and thinking they are alone. The site helps them feel less isolated.
We have support groups at Sheffield Spinal Unit and Nottingham QMC hospital and have made contact with all 11 UK Spinal units and many District hospitals to encourage them and offer practical help to set up local support groups and specialist clinics where they are needed. Our goal is to have a network of local groups across the UK equipped and able to provide moral and practical support as well as signposting people to essential information and resources. We are particularly keen to involve the NHS in this process so that we can work in partnership with them to ensure a positive care experience for CES patients.
Our volunteer-led social groups in the East and West Midlands offer an informal way for patients to meet up over coffee and discuss their day-to-day issues as well as fundraising ideas. We are always on the lookout for volunteers to host these events.

Q What are the charity’s current research and fundraising projects?

A As part of the James Lind Alliance, Spinal Cord Injury Priority Setting Partnership (SCI-PSP) we are seeking to identify and prioritise the most important research questions about spinal cord injury, including CES. This research partnership is

co-ordinated by Katherine Cowan, Senior JLA Advisor and Joost van Middendorp, Research Director at Stoke Mandeville Spinal Foundation, and we are one of a number of organisations involved including BASS, UKSSB and the SIA.

The partnership process will rank the top ten unanswered questions, or ‘treatment uncertainties’ for Spinal Cord Injury (SCI) including Transverse Myelitis and CES. These questions will be made available to research funders to inform future research into SCI. Minimal research has been done into CES up until now, so this is very encouraging and we are really excited to be involved.
We are a very small charity but we are lucky to have an enthusiastic bunch of supporters who are willing to hold fundraising and awareness events across the UK. There is currently a 10k run, a parachute jump and a street party in the pipeline and members have been involved in organising music quizzes, afternoon tea and Caribbean Nights, to name just a few.

Q How closely do you work with surgeons or medical device companies?

A We currently work with a number of medical companies, particularly those involved with the manufacture and distribution of continence products. Continence is a huge issue for our members and they are often unsure as to what treatments are available. There is a wide range of options and we try to ensure people are aware of them. We have also given medical companies a patient’s perspective on their products which has led to improvements and innovation.

In February 2014 we had our first conference at the Royal Society of Medicine in London. Speakers included James Wilson-MacDonald, Consultant Orthopaedic Surgeon with current appointments at Nuffield Orthopaedic Centre NHS Trust and the Oxford Radcliffe Trust, and Nick Todd, Consultant Neurosurgeon at Nuffield Health Newcastle Upon Tyne Hospital and Neurosurgery/Spinal Surgery Advisor for National Institute for Health and Care Excellence (NICE). The conference received extremely positive feedback and all the presentations are published on our website along with recordings of the presentations by Mr Wilson-MacDonald and Mr Todd. Going forward, it is very important to us to have the support of healthcare professionals, and at some point in the near future
we hope to invite a surgeon to become a trustee for the charity.

Q How can our readers become involved in the charity?

A CES patients, their families, carers and healthcare professionals are all welcome to become members of our website, To receive our monthly newsletter and keep up to date with the charity’s progress, register via email at

We particularly want to hear from people who have been diagnosed with CES, or are relatives or carers of people with the condition. As I mentioned earlier, we are keen to extend our network of social groups so that we can provide local face-to-face support and gradually help people to rebuild their lives. In addition, we are also keen to build links with healthcare professionals at all levels and they are also welcome to get in touch. For more information on how to get involved, email or call 0116 2608294.

CES UK Charity’s second conference will be taking place at Sheffield Hallam University in May 2015. To register your interest in attending or for more information please email quoting reference CES0215.