Cauda Equina Spinal Cord Injury CESCI - Q&A with founder Allison Whitehorn

At Boyes Turner we are proud to be a trusted legal partner of Cauda Equina Spinal Cord Injury or CESCI - a not for profit organisation that offers support and access to information for those living with, or supporting those living with, cauda equina syndrome. We have supported the group for a number of years now and are proud to continue to do so.

The organisation was founded by Allison Whitehorn, and her husband Nigel. Allison herself lives with cauda equina syndrome and wanted to create a safe space for those also living with the condition to share their story, to seek support and advice and shared lived experiences, and provide links to useful resources and the help people need to manage their ongoing symptoms. Membership of the group is now at over 2200, and continues to grow, both with those living in the UK, and further afield.

Julie Marsh, specialist medical negligence cauda equina solicitor recently spoke to Allison about the group, the key values that make the group such an amazing resource for those living with cauda equina syndrome, the common questions new members to the group ask, and what the future holds for the group. 

What do you think is the most important thing CESCI can offer to those living with cauda equina and why it has been such a success?

Above all, we offer empathy, support, and time. That personal connection really matters. We also signpost people to other resources like the Spinal Injuries Association (SIA) and practical support around state benefits, with form filling, tribunals and anything that is required. If we can’t help directly, we use our wider network to find someone who can.

What are the most common questions new members to the group ask about cauda equina syndrome? 

The biggest ones we hear are:

• Why haven’t I had a follow up?
• Is it a spinal cord injury?
• Why is there no Physio as part of my rehabilitation?
• How do I get bladder and bowel support?

We find that quite often people feel like no one understands their condition - not friends, family or even health care professionals. We try to help them think about how they explain it, and the way they are feeling, so they can get support from those closest to them.

What are the different ways the group offers support to those living with CES? 

First and foremost we try and speak to every new member who contacts us directly. That might be me calling them, and talking to them but we also have a few key members of the group who also offer that direct, one to one, peer support.

We meet up in person regularly at different locations across all the UK, and encourage our members to come along and share their experiences, but also so they can make local connections with others living with the condition. These small, informal gatherings help us offer educational advice but practical, personal advice too. The group meetings makes them feel less alone and isolated, knowing someone nearby is also going through a similar experience.

We work closely with our trusted partner Coloplast, to make sure that our members get access to specialist advice on urinary and bowel management, a key issue with cauda equina syndrome.

We also direct our members to other spinal injury services, like the Spinal Injuries Association (SIA); Back Up and Aspire, who have great resources and practical advice. We are the leading CES group recognised by SIA and a key stakeholder of SIA itself.

Nigel is part of the APPG with SIA and part of the end users group with Wheelchair Alliance. 

I am the global ambassador for Coloplast, which means I get to speak first hand to continence professionals about new aids and equipment that can help our members, and get to speak to professionals about living with the condition. 

For those who have suffered an injury as a result of medical negligence, we have our trusted legal partners who can offer advice as well. We even have a CESCI craft club, which allows people to use their creative side which may have been forgotten in the darkness of the condition. 

And you do some education work as well, raising awareness of cauda equina syndrome and the red flag warning signs of it, don’t you? 

Yes; I’ve been invited to speak at training days for junior doctors, about what the red flags for cauda equina are as well as telling them about my experience of living with cauda equina syndrome. It’s so important that CES is recognised and treated promptly, but also that medics realise what the ongoing symptoms of cauda equina syndrome are, and what that means day to day for an individual.

I have also attended MASCIP to raise awareness of cauda equina syndrome, and I am regularly invited to speak at meetings with urology nurses and continence professionals to share my story.

The group has grown so much over the last few years but at what stage of their cauda equina journey do people reach out to you for support? 

It can vary so much. We are sometimes contacted by people very soon after their spinal surgery, who have been told they have cauda equina syndrome but have no idea what that means on a practical level; what that is going to mean for them in terms of rehabilitation or managing at home or getting back to work.

And on the other hand, we have some members who have been living with CES for a long time but who have never been able to find the right support, or talk to others living with the condition.

People can need support at different times; everyone is different but we are here to meet that need as best we can, no matter when they get in touch.

How important is the peer support you can offer and what form does that take? 

I think knowing someone else is living with similar problems to you, and to see that many of our members have managed to get back to work, to adapt to their life after injury, to drive, to have a family or to engage in a meaningful independent life is so powerful, and it can be easy to think about how life limiting your condition could be instead of how to re-frame things. I think being able to share the lived experience is where we can all draw strength from one another. 

Peer support at CESCI might be a telephone call with me or another member; it might be coming to one of our group meetings; it might be joining one of our online catch ups which we do regularly or just being part of the Facebook page and contributing to our “wide-awake club” chats for those awake in the wee hours of the morning.

We also offer support to those caring for the people living with the condition. We know support is so important, and those people need peer support too and that is where Nigel can offer support to our members too.

We also tailor our support so we have groups for men’s chat and women’s chat just to acknowledge how different people have different needs and need a safe space to share that.

The Getting It Right First Time Pathway (GIRFT) has been in place now since February 2023. Do you think that has changed things on the ground, and speeded up diagnosis and treatment for people?

Honestly, it is hard to tell. We are still talking to people regularly who have been newly diagnosed with cauda equina syndrome, and who presented to Accident & Emergency with lower back pain, sciatica and problems going for a wee, who have been sent home without a full assessment, and without having an MRI scan. That is hard to understand when the guidance is so clear and that an urgent MRI scan is key to getting a diagnosis and prompt onward treatment.

Sadly we are still seeing people suffering a delay in diagnosis, often resulting in a delay in surgery and they end up in a worse position as a result of that delay.

So it is hard to say that we think GIRFT has really helped. And whilst GIRFT has focused on diagnosis and treatment, which is so important, it is also the aftercare process and spinal rehabilitation that needs to be reviewed as well.

So many people we speak to are not referred to a spinal injury unit for treatment after their injury. They have to ask their GP for a referral. People have to ask for a referral to the continence team, to a urologist or bowel specialist and the mental health impact of living with CES is profound but there is limited support available.

That is why it is so important they we continue to provide advice and support to those living with CES.

What are the plans for the future of CESCI? 

Our future plans include to continue to raise awareness for all who are living with CES, and help people, including medical professionals, understand the issues which come after surgery for this living with the condition.

We want to push for CES to be in everyone’s vocabulary.

We know a lot of people live with back issues but rarely is CES considered as a diagnosis. We know that with the presence of red flags, a simple MRI can mean prompt diagnosis and can really change the outlook for someone who has this disabling condition.

If caught within the optimum timescale, many of the most serious ongoing complications of the condition are preventable, or will be relatively minor and easier to live with, and adapt to.

As we know this condition is time critical. We want to make sure people are aware of the condition and feel empowered to ask for an MRI scan if they have the red flags.