It’s 3 o’clock in the morning just after Boxing Day and I have shooting pains in my foot which is keeping me awake. I’ve taken up for thin paracetamol, Ibuprofen and CBD and yet I am sitting here is up from the sofa watching the West Wing on All4, stroking my leg because it won’t let me sleep.
This is also being dictated on my iPhone so I apologise for any spelling mistakes that will appear in this blog.
For anyone who doesn’t know CES stands for cauda equina syndrome, it’s a situation where your spine bulges onto your nerves and cause spinal damage below the waist, it varies considerably from having numbness in your bum to being left in a wheelchair and not being able to feel your feet and legs, which is what I have. One doctor called it the worst injury can get and nobody knows about it.
For me I have the worst kind because I get shooting pains which the doctors have nicknamed ‘epilepsy of the legs’ and this is why I am up at 3 o’clock in the morning dictating this blog.
A few weeks ago I contacted my local MP Luke Evans, the reason I contacted my MP is because the NHS is paying at £350 million a year in compensation for cauda equina syndrome is misdiagnosis.
On another matter I also found out that there is £89 billion tied up in legislation for compensation in the NHS in the UK, which is a stupid amount of money.
Luke asked a question in parliament for me to see what research has been done on cauda equina syndrome.
The difference to cauda equina syndrome is that it’s not a disease it’s an injury where things like cancer and aids can be treated with drugs and chemotherapy. An injury is less likely to get any attention. For example from my understanding there is only one charity shop in the UK that raises money for CES in which I have donated thousands of pounds of games, clothes and anything else I can find that can be sold in the shop.
Luke my MP came back to me if you weeks later and it was established very quickly that there is no research whatsoever being done into cauda equina syndrome. Which indicates that the NHS are happy to pay out £350 million a year in compensation to people who have been missed diagnosed with CES.
Given the fact Ability Access is the most read disability page in the world on Facebook I am hoping that contacting my MP will help many people with CES.
What I would like to do is to raise funds for better training on CES, raise awareness on CES, and also set up an organisation that will help people who are diagnosed with CES rather than just being left in the wind to find out what they need to do for themselves.
3 thoughts on “The injury that is costing you, £350 million a year and you know nothing about it.”
I am 16 years pre op and it just seems to have changer back 12 years and i am in a hoop again.getting no support neither financial or health I’m 54 worked as eec engineers since i was 14 i went from 60000 + a year to little under 9k and pay bills and rent a house my mind has blown nothinhg or nobody will be the Samar
I have CES & it was misdiagnosed & I’m left with all the things you described & more. I have basically been left to my own devices I have had to & still do push my doctors for any help when I went into a wheelchair full-time I got no help I think I will be seeing a lawyer pretty quick
I have CES too, I can sympathise with your nerve pain. 2 years ok and 3 surgeries later. No one prepares you for the long term effects of it. I had bad aftercare and was not informed that I would be left with permanent damage, I was told at my 3 month follow up. Everyday is a battle to be honest.