Stop the Pressure Day 2023 - your stories
On Thursday 16 November we’re talking about all things pressure ulcers as part of international Stop the Pressure Day 2023
In this video Amy shares her experience with pressure ulcers and how they have impacted on her daily life.
Steve has also kindly shared his story of his experience with pressure ulcers and how the results he has achieved with a new treatment have led him to petition for it to be available through the NHS.
Steve was diagnosed in 2010 with a rare spinal condition that led to a spinal cord injury T9 to T12 and the resulting paralysis means he is now a full-time wheelchair user.
“When I was newly injured it was devastating news but since I have been living with my spinal cord injury, it has given me a new lease of life and I have met the most amazing people I could possibly ever meet in my life. There has been a lot of positives that came out of my injury, but pressure ulcers are the main thing that has been holding me back.
I have had them since 2015. I used to compete in things like wheelchair table tennis but had to stop that due to the pressure ulcers.
At one point I re-married and moved to the Swindon area but whilst there I was bed bound for almost 2 years due to pressure ulcers, bone infections and sepsis. The problem with them is it turns your life upside down and if you let it, it can destroy your life.
I am quite a level headed person but I’ll be honest, I even contemplated suicide at some point, that’s how bad I got.
It’s the isolation of being house bound and bed bound plus I was getting mixed messages all the time. I am not knocking the doctors; I was on air beds and tilt mattresses, and I got two pressure ulcers whilst on them, so they don’t work for everyone.
These same sores I have had since 2015, the sacrum one started as Grade 1 but very quickly deteriorated due to how it was treated. I even have a letter from a tissue viability nurse at the time saying that the due to the incorrect dressings being used it caused the deterioration of my pressure ulcer. Then I ended up in hospital and it went from Grade 1 to Grade 4 in no time, and I ended up having to have major surgery. They had to remove my coccyx bone as when they looked at the pressure ulcer it was 7cm in diameter and right down through the bone.
When it was first spotted, I didn’t feel I had the knowledge to know how serious it was. They said to me at the medical centre that if I hadn’t come in when I did, I wouldn’t have lasted the week and that was a real wake up call for me as to how serious they can be.
I have been told since by various healthcare professionals that a lot of what happened to me could have been avoided. I am not one of these that wants to make a claim, but mistakes can be costly and life threatening.
In recent years I feel like I am managing it better. I have 3 pressure ulcers in total, one on each hip and the sacrum one but they had never actually healed.
However, the left hip one now is almost healed since I have been using Amicapsil-SCI which I first got to know about through SIA. Amicapsil-SCI is licenced for use but not yet available on prescription.
I read about it and thought it seemed interesting and so I pursued the option of using it with my healthcare providers, but nothing came of it and again when I moved back to Bury but nothing. So, I thought I am not giving up on this, I want to help all those like me who are suffering with continual pressure ulcers.
I would never believe there is a miracle cure and to me that is what Amicapsil is. In eight years, there is nothing they haven’t tried on me from silver and seaweed to pumps but nothing has worked as well as this.
Before I started on Amicapsil-SCI, I was in and out of hospital, I was on and off antibiotics including intravenous. I was having all sorts of scans which would have cost goodness knows how much. As soon as I started using Amacapsil, it was a massive shock to me how quickly it works.
It really frustrated me that the funding board had all the information from me and photos of before and after with this Amicapsil-SCI, but they still said they needed more information. In my opinion it would be more cost effective to the NHS without a doubt, even though it is currently £57 for a tiny bottle. Now I treat my left hip myself.
If I had been able to use Amicapsil-SCI from the start, then I think that all my wounds would be more or less healed.”
SIA have submitted an application the NICE for further investigation of Amicapsil-SCI through their Medical Technologies Evaluation Programme (MTEP) . MTEP considers technologies that could offer benefits to patients and the health and social care system over current practice. The hope is that , following their evaluation, that they may advocate its use in the NHS.
Meanwhile Steve has started a petition to make Amicapsil-SCI, available to all UK sufferers.