Interview with Allison Whitehorn – offering support for those with CES
Allison, like so many people, had never heard the term cauda equina syndrome before her diagnosis and the operation she had on her back. Since her diagnosis, Allison’s condition has changed and evolved. She suffers with bladder and bowel issues, and has been left unable to walk or stand. Allison uses a wheelchair and her family home was recently adapted to make it more accessible.
In the last few months, Allison has been working with other cauda equina sufferers to set up an organisation called Cauda Equina Spinal Cord Injury.
Her aim is simple – to support people living with cauda equina syndrome.
Julie spoke to Allison recently to learn more about the new support group.
Julie: Allison, can you tell me a bit more about the support group you have started?
Allison: Our aim and the ethos of the group is to simply support our members. The aim is to be available 24/7 to those who need our support. Our members participate in our groups and online events, all with the aim of supporting one another in any way we can. The great additional benefit is that people are building friendships along the way as well.
We are working with the Spinal Injuries Association (SIA), Backup, Aspire, Motability, and Hollister amongst others, to help provide support and advice to people who have been diagnosed with cauda equina syndrome, and who are living every day with the effects of this condition. We have a positive feel and ethos, and it’s about helping others where we can, and signposting wherever people need to go for further help and support.
Julie: When do people contact you and your group for support?
Allison: It can be at any time in their CES journey, from shortly after diagnosis, to having lived with the condition, like me, for a number of years. We don’t say no to anyone who is living with this condition.
Cauda equina is different for every person diagnosed with it. There are some common features but the severity of the symptoms, and how it affects people, is different for everyone. People can find it difficult to reach out for support in those early days after the diagnosis, or do not fully understand, or have explained to them, the extent of the ongoing issues they are likely to face. Sometimes people have been living with the condition for a long time but have not been able to access the support they need.
Julie: Do you get a lot of questions about how CES might affect people in the future?
Allison: Definitely. A lot of the discussions in the support group or on the Facebook group are around people’s current symptoms, but also whether people have had any improvement or deterioration in their symptoms over time. They want to know that they are not alone in what they are experiencing. They want to know how best to deal with a problem. Together as a group, we can support people with those questions, and help them think about what further intervention they might need.
Cauda equina can affect people differently, and people struggle with that uncertainty and not knowing what to expect. We can help by giving an overview, so that people feel better prepared when faced with a new problem. And we can offer advice about how to deal with it.
Julie: What further support are people with CES looking for?
Allison: It can depend on the individual. It might mean help around self-catheterisation for those with bladder issues. It might be a question about constipation and bowel management.
A common theme with people contacting our group is aftercare or, in a lot of cases, the lack of it. There is no clear aftercare pathway for people diagnosed with cauda equina. It is an injury to the spinal cord yet there is no aftercare pathway as there is for spinal cord injured patients. There can be a lack of understanding in the medical community about the nature of the issues you face when you have had this condition. I remember being taught to self-catheterise. The nurse told me I would feel the catheter but as a result of cauda equina, I had numbness in my genital area, so I was never going to feel anything. The nurse just did not understand and it was so frustrating at the time.
Julie: Mental health is always a concern when someone has a severe and life-changing injury. What do people say to you about this when they contact the support group?
Allison: I think of us as the life ring for many who are adrift with this diagnosis. We give people something to hold on to when they feel at their lowest. People feel better knowing that they are not alone in living with this condition, especially those who are newly diagnosed and who do not know what the future might look like.
It helps to know that someone else is going through what you are. I’ve had people say to me that just being able to read about someone else who is going through the same things as them has saved them and changed their life. That is how important it is to offer this support to people.
Julie: What else are you commonly asked by people coming to you for support?
Allison: Those who are newly diagnosed with the condition are worried about practical things – the ability to get back to work, pay the bills and get on with life as it was.
Then people want to know about the condition - what it means and whether there will be improvement or things will get worse. Even I am still learning about the condition and, as we all age, our body will change and so will our ability to cope with the condition.
One of the most popular comments from people I speak to is, “Why didn’t anyone tell me how bad it is? Or that it would get worse before it gets better?” People can often get up after surgery and walk but there are hidden elements to the condition that people do not see or understand.
I spend a lot of time explaining that the surgery to treat the issue in the back that has caused the compression of the cauda equina nerves is just to stop the pain, alleviate the pressure and prevent paralysis. People think they will have the surgery and be better in 6 weeks’ time. Then they find out this is not the case, and they are left with life-long issues that they are going to have to learn to cope with. They are often worried about getting CES again. This is where those of us who have been living with the condition for longer can help.
Julie: How comfortable are people seeking further medical help and support?
Allison: Sadly, I hear sometimes about a lack of trust in the medical profession, particularly where people have gone to the GP or hospital with their back pain and other symptoms, but who are sent home and then diagnosed with CES later. I also hear about people who have had great support from their GP and have also managed to have some inpatient support from a local spinal unit. But it can be hit and miss!
People with CES often suffer with fatigue, and it takes a lot of energy to do the most mundane thing. That makes it that much harder for them to seek further medical help, and push for onward referrals for bladder and bowel management and other support.
Some people have reported to me that they feel that they have to constantly fight to be heard and understood and to express the issues they have. We try to encourage all those we support to talk to their GP or other medical professionals about the further help they need.
Julie: What does the future hold for you and the group now?
Allison: With support from SIA, I hope to be able to go into hospitals and meet spinal injury patients who have been newly diagnosed with cauda equina syndrome. I am just waiting for lockdown rules to ease, and then I hope to be allowed into hospitals and to be able to travel and see patients in their own homes. It is so important to let people know that they are not alone and that there are people living with the condition who are happy to share their experiences of living with CES. Beyond this, the group are just going to keep doing what we do best and continue to offer support to those who need it the most.
We look forward to staying in touch and supporting Allison and her team, as they continue to reach out and support those affected by CES.
If you have suffered disability as a result of delays in diagnosis or treatment of cauda equina syndrome, and would like advice on bringing a medical negligence claim, contact us by email at firstname.lastname@example.org.