Why is our work so important?
I set up our non-profit following my own CE injury in 2010, which had resulted in permanent disabilities following delays in my treatment.
It was my aim to develop a resource of information and a network of support for patients like myself. At that time care pathways did not exist in the NHS for cauda equina syndrome. People struggled to find the services/products they needed to help them adjust to life with CES. Remarkably, there was more information available about canine cauda equina syndrome – Yes! Dogs get it too.
Nine years later, although some Trusts have developed pathways, many have not, or have inadequate provisions. Care is fractured, not much has changed for somebody who is affected by cauda equina syndrome.
We continue to raise the profile of cauda equina syndrome and want to make the public as familiar with their own cauda equina, as they are with their Adam’s apple, breast bone or Appendix.
There has to be a public health campaign rivalling the Meningitis or Stroke campaigns. Public awareness is just as important as awareness amongst the different medical professions.
Attitudes must change about low back pain, which is subject to a huge amount of prejudice in society. Healthcare professionals need to listen to the patient, without disregarding their pain and symptoms.
I once asked a leading medical expert what his opinion was about the mis/delayed diagnosis that cast a shadow over cauda equina syndrome, his answer, “Well….we see a lot of fakers?”.
I was even privy to an explanation of the functioning patient as an excuse, and this amongst medical professionals trying to improve things for patients. I will save that one for another day!
Support group meetings offer face to face peer support, product demonstrations and advice across the UK. This means our services accessible to everybody in the community affected by CES. Every member we have, either in our online groups or across the country contributes to the support we offer.
We are a tight knit community and it is humbling to see how people offer comfort and advice time and time again in our groups, to complete strangers, making the daunting and isolating world of cauda equina syndrome ever smaller.
Moving forward, we are offering patients support packages over 12 months to address the emotional and psychological impact of the condition. We hope to intervene early enough, offering crucial support so reducing the impact and trauma experienced currently by patients and loved ones. Continuance of care and support is sadly lacking for cauda equina syndrome patients.
Ultimately, we give patients and family members a voice, whilst focusing on changing cauda equina management in the best interests of patients everywhere.
I was very fortunate for the legal support I received and subsequent success in my own negligence case. Not everybody is so lucky. I am now able to dedicate my time to improve things for others, regardless of their circumstances. This is what drives me. The injustice, apathy and ignorance surrounding cauda equina syndrome is a national scandal. I will continue to champion our cause until every single case is documented, and effective systems are put in place that deliver real results in the reduction of permanent disabilities.
About a year ago I nearly threw the towel in. Nobody was listening, nobody cared. I was totally frustrated by the lack of interest in changing things. It seemed everybody had their own agenda and patients and families were being over looked time and time again. I felt powerless and exhausted by it all.
I discussed it with my daughter Libby, who protested and said to me ‘‘You can’t give it up Mum! What are all those people going to do without you helping them? Who else is going to do it?’’
And there you have it in a nutshell…
Cauda Equina Syndrome is bigger than any one persons’ plan, bigger than any medical ego, or legal career, it is a problem that has to be be solved. I have resigned myself to the fact that this is my journey and passionately embrace the opportunity to change the CES landscape. I am grateful for all the relationships that have evolved helping us achieve this, and for all the friends I have made along the way.
We are very excited at CESA and would like to thank every single person in our groups, as well as every medical and legal professional who has helped us to where we are today. All of our achievements are a result of the contribution of our unique CES family – a remarkable team effort.