One critical care nurse's journey to give patients a voice .

Caroline Simcoe

I have worked for many years in the ICU. It is a job I love and I am passionate to uncover and integrate new ways of improving how we can deliver care to this vulnerable group of patients.

The rehabilitation of critically ill patients begins with effective communication . Communication really is the key to unlocking the potential of our ICU patients !

And it is this point which prompted my efforts in December last year to lead the team in ensuring we gave our patients a strong , effective voice.

I love to talk and understand how vitally important it is as humans to be able to share ones words, hopes and feelings with those around us . This is my story, my words and all my own thoughts. My thanks to Dave Carson , the Intensive Care Voices / team and Smartbox Ltd for all their support in striving to give patients a voice .

 

With thoughts to inspire others

Caroline

Sometimes you just need to add your own voice to make a difference.

One voice makes a start , but like a choir as others join the message gets louder and stronger.

The Facts

 

Some patients get  locked in their 'silent world' . As a nurse I didnt need to read widely to know that ! I could see with my own eyes.  

I read voraciously trying to find solutions to resolving the situation. What had others tried , what worked or didnt ?  It was all relevant . I scrolled websites for interventions and technology. Comparing how devices catered for conditions / ages etc. Paying attention to all that was available which might help those non verbal patients.  I needed to include those who could not use their hands or perhaps had little or no mobility in regard to head movement . Those  devices available to spinal injury patients and neurologically impacted patients were presenting as strong options. If we could just find a device that met everyones needs with software that would meet the comprehensive needs of the critically unwell and translate across to the acute areas also . This would be a solution to not just ICU but the other acute areas . I was on a mission!

 

It  was well noted in the numerous healthcare/ research articles that the impact of having no voice was undoubtedly  detrimental to patient wellbeing . Psycholigically the impact of being critically unwell on ICU patients is huge ! And in my locality we had at least 5 patients a month ,who just by having a tracheostomy lost their voives for a time .Some for a prolonged period .

For this reason in previous years we had as a unit  instituted many interventions to promote our patients voice including low tech aids , alphabet boards , pen and paper , signs , pictagrams , voice amplifiers . We had even at points utilised iphones and computers . Anything to gain THEIR feedback , THEIR involvement in THEIR care.

 

Yetstill we had patients who fell through the gaps of our communication net.

 

Speech and language were excellent in supporting but the solutions were not always immediately available . There was a lengthy refererral process to tertiary centres for assistance and equipment available was on a case by case basis. It was imperfect.  So when I had a patient who needed a voice urgently and needed a way to interact . I believed it was time to change tack . Maybe there was a better way forward..... but at a cost.

The newly formed Intensive Voices choir sang to raise funds

Like minded staff  , previous patients and their families from the ICU signed up for a brand new choir.The aim was to raise funds to purchase devices which would allow us to give all patients a voice. We sang loud and people listened ! The 'Intensive Voices  ' appeal was a great success and the choir event kicked off our appeal with over £4000 raised.I was so proud of all the hard work the team had put in . Support was overwhelming from the public. As following this there were walks, auctions, runs and a myriad of other fundraising events. The news heard of our work and were keen to promote the cause . Dave Carson an ex patient in our ICU and his wife were both keen supporters. And it was with Dave that we presented eyegaze to the world at large so that the public would understand what we wished to achieve. The devices we were raising funds for would make a huge difference.

The appeal meant presenting the issue in as many ways as possible.

Both Dave and myself spoke about patient communication in ICU . How it affected both patient and staff . We wanted everyone to know all the perspectives . Dave was particulary great dealing with the press , unlike me his unpolished sidekick. I learned fast though and presented to the many people who needed to hear about the need for eyegaze technology in ICU and all the adjuncts that Augmentive Assist Devices could provede .

Motivation is driven by the wonderful spirit of the team

The ICU team have been so supportive from partaking in  the choir and running events ,to  providing raffle prizes and liasing with local supporters. It has been very humbling to see how far people go to support a cause. I began to see everyone in a new light and felt myself moved by such support. It was clear that together we could achieve so much . That is what kept me going even when there were gliches in the events organisation and I spent more hours with others rather than my family. It was all worth it to see people coming together to 'give patients a voice'. I even managed to have family involved in the choir which for me has been so rewarding.

With much love to my mum,sister Zoe and my son Luke

Thankyou

So what worked ...the SMARTBOX link

I contacted Smartbox Ltd during the trial period of devices . Their Tobi devices with eyegaze technology had what ICU needed on paper. I hoped the reality matched the vision.

It did and then some !

A large screen which met even the more challenged patients needs in terms of sight. A range of adjuncts to meet the complex range of patients abilities both mobility and dexterity wise . With switches and mouse options to use with the mouth , lips and so on. Using just the lightest of touches . And the ultimate , the ability to access the device with the eyes .All with the added bonus of a real voice to speak the patients words. It was a revelation !!

And patients could access it easily with software that provided all with the means to communicate simply. This was just what we needed to allow patients who may have cognitive issues , giving them the ability to interact as well as those with disabilities of a more physical nature.

With practice the patient could not only be able to ask nurses simple things but could access friends and family too. Using social media links ,the web and so much more . A voice truly unlocked and it was emotional to see opportunities unfold.

Now ICU patients can speak with their eyes and the future for those previously locked in is so much brighter. The next phase is the utilising and auditing of the new devices in situ . Looking at the improved outcomes to patients and learning from our experiences how to make communication even better.

How people communicate is getting faster and more technological , so we must move with the times. Lets spread the word and give all patients a voice .

 

 

 

 

The next steps to getting others to follow suit we hope.We present in London as finalists.

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My thoughts