CES Awareness Day 2021
On Cauda Equina Syndrome (CES) Awareness Day our SCI specialist nurse, Damian, looks back on the months since our merger with CESUK
Following the merger with CES UK at the beginning of the year, SIA has welcomed 1200 new members to our services. CES UK was one of a small number of charities aiming to provide information and raise awareness of this rare condition. We have a shared aim of supporting every person living with CES to get the support they need to lead a fulfilled and active life.
The medical literature consistently reports that 1-3 in every 100 000 people in the UK have CES. The lack of awareness of the condition and no clearly defined national pathway for the diagnosis, treatment, and management of CES has left many people looking for the right advice and support to manage their symptoms. As a result, it can be argued that the reality may be much higher.
Although SIA already provided support for people with CES, the numbers were quite low. Since the merger, this figure has risen significantly. We have been hearing of delays of diagnosis and treatment time and time again. People are coming to us for advice and support regarding the various physical complications of living with CES and also the psychological impact. It is sounding loud and clear to us that there is a real need to address this.
Because information and advice is sporadic and not easy to source or access, we want to use our profile and our voice to offer that much needed help that people are looking for. We can build on what has already been started by utilising the resources we have at our disposal to make real, tangible, positive change for those affected.
There is access to the various services already in place at SIA, which include our advocacy and campaigns team, the support network which includes our specialist nurses.
Whilst we recognise that spinal cord injury (SCI) and cauda equina syndrome are inherently different, there are also many similarities. The merger makes absolute sense for SIA, our association of trusted partners, and our relationships with other organisations.
Together we can take up the challenge to continue to raise awareness and provide good clinical information to both the person with CES and to the healthcare professionals who support them.
We have the foundations and expertise to create an inclusive association which will develop and grow. We now have 2 designated volunteers with CES who can provide that lived experience to the growing community to share those issues in a safe and understanding forum. We have a trustee on our board with CES.
Our online cafes have embraced the merger and proved to be a valuable forum for people with CES to build this community and share information and experiences. We can facilitate the needs of our members to ensure the cafes meet the expectations of what is important to them.
As a user led service, we want to know more about the issues that are faced and then we can use our resources to focus our attentions to the most relevant areas.
SCI nurse specialist