Patient education; speaking to patients, about our patient education tools – Evie Toombes’ story.

Hello! My name is Evie Toombes, I’m 19 years old and was born with a spinal cord injury effecting my legs, bladder and bowels- meaning that I spend a fair amount of time in hospital and need various treatments such as IV nutrition and fluids too help me thrive. I’m also a Team GB para Showjumper, trying to life my life to the full in the best way possible whilst balancing health and competing! I began sharing my (kind of crazy) health and horses journey 8 years ago on social media and have since go one to continue raising awareness for invisible illness and disabilities by sharing an insight into my life, visiting schools to give speeches and help create more understanding for everyone.

Nearly 12 months ago, I started TPN during a time when I was severely malnourished and weak from living with motility issues in the gut that had deteriorated rapidly. The result of this left us with no other option than Intravenous feeding and fluids, something a lot of health professionals had always warned me of the risks and concerns over. Truth me told, I was frequently reminded during appointments that this would be a worst case scenario plan, ‘Plan Z’ if you like. Instead of being given balanced information about intravenous access and nutrition, I was met with what felt like scary stories and warnings from my healthcare team – whilst all with good intentions, this played a big role in me struggling to cope with actually being put on TPN when that time did come.


The emotional rollercoaster

After another admission to hospital and starting TPN, a few months down the line we began discussing a plan to discharge me and continue this treatment plan at home. It was at this point, whilst excited, I also felt like I wasn’t ready. The idea of coming home with intravenous infusions to do, TPN to manage, specific protocols to learn, and a Hickman line to care for was nothing short of an emotional rollercoaster for me. Most people at this stage in their healthcare are likely to be very unwell like I was and so instead of having a choice, IV therapies become a necessity – not an option.


Fear of the unknown

Honestly, I did not cope well with the idea and felt completely alone, isolated and full of worry; this was hugely out of character for me dealing with my health. I tried asking questions and researching but could never get a straight answer, there were so many things I didn’t know and the thought of learning it all felt so overwhelming. However looking back, this all stemmed from fear of the unknown, not knowing what I would need to for how my life would change, everything felt so uncertain….all of this was the actual reason for my worry, not the actual treatment itself.


Knowledge gives us confidence

What I’ve come to learn, time and time again throughout life so far, is that we are more likely to worry about things that we can’t fully understand or control, and for me this was TPN at the time. We aren’t born knowing everything, and having gaps in our knowledge is a normal part of being human. But with the right help and support from people and also resources like the Vygon education packs it is not only possible, but a lot easier to return to what we want to do, what we enjoy, and what fulfils us, without worry.

Nonetheless this anxiety and fear is a huge challenge that a lot of people experience, especially in healthcare… Being able to look back now that we’re one year on and having read used the education packs from Vygon, I see this fear as an unnecessary challenge that is often put in our way, yet if we had the right help it would have never been such a big worry.


New skills

It’s only when we become accustomed to our new skills, knowledge and routine that we can begin to see past the fog of anxiety and begin to live life again. The Vygon patient education packs address this challenge seamlessly, with easy to understand information, diagrams to help you familiarise yourself, and plenty of tips along the way to help us feel confident and adhere to best practice protocols. reading it, you really know that this was written for you, it will actually help you and see you through to being able to move forward with your life and healthcare. Whilst hospitals do a fantastic job of delivering care, these education packs take that next step, enabling us as patients, family members and carers to actually take back some power in our own lives, begin living again without fear or worry. This ultimately leads to being able to feel more confident as we build the knowledge we need for our healthcare.


I wish I knew

Now a year down the line in my own journey on TPN at home, I know that one of the best things anyone can do is reward themselves for trying, I wish I was told that we’re all trying our best and whilst each journey is unique, being able to access Vygon information packs and build our knowledge is one of the most empowering ways to boost our confidence and begin living our lives to the full. We are capable of learning along the way, we can thrive again, the worry will lessen and the fun will begin again- keep going.


Moving forwards

Having the knowledge and confidence from being able to learn and take back the power of my healthcare has meant that I’ve been able to reach for my goals again. Whilst getting back into the swing of our hobbies, anyone can feel defeated at times..especially when health is a big concern. However with small steps, a goal in mind, and a whole lot of effort- we can all become living proof that anything is possible.

For me, this materialised in being discharged from hospital on TPN at home, and setting my sights on winning the national championships class in para showjumping. I hadn’t ridden in months due to being in hospital, was completely out of practice but was keen as mustard, and determined to pour all of my efforts into this goal.

Admittedly, there were tears along the way, sleepless nights and this one goal was prioritised above anything else. But 6 weeks later, we travelled to the national championships, rode into the ring with one thing on our mind. Every inch of effort, both in my hobby, and in the healthcare leading up to it and afterwards got us to that very momentmaking that incredible victory a memory to stand as a testament to what is truly possible when you can move forwards from your fear of the unknown, and begin living your life to the full again.

Published 30th April 2020