Little Boxes

      
Over the past few weeks there have been many moments of brightness, contrasting with confusion, unexplained actions and fear.
If we look at impact, and I often talk about this in real time, the consequences to that are, the person effected is left dazed, unable to process and fearful of the future.

Each of us are unique, we carry with us and hold deep within us an ability to behave in a certain way, to re-act to situations, to process and to respond.

Often then, unique people are placed in little boxes- which they cannot seem to find their way out of, this can often result in their character and essence being closed away - rather then being explored, allowed to evolve, celebrated,  and shared.

"Experience growth and the will is far greater than the ability to shut down every time you are scared and want to play it safe"

 I am relating this to a unique group of children and young people I have the honour of sharing there journey with.
                Sometimes they are put in little boxes.

I spend lots of time observing C&YP who are living with long term health conditions, I sit alongside them during treatments and admissions to hospital.
I observe how they are greeted, and the affect it has on them with yet another admission to face.
I spend time with their families, and siblings as they too form part of this journey.

How does this impact on their "non-hospital life", the life away from blood tests, blood pressure checks, treatment, cannulas, more nurses, more doctors.

Do they want to have polite conversations with nurses and doctors who have been with them since they were a baby, when they are now 14!

I have explored this with C&YP this week as I have walked alongside them to support them through there latest stay in hospital, I have been an observer and student.
This has enabled me to really listen to what they need, how they would like to be heard, and what they want from their routine admissions in hospital.

" I like coming here because I get to see some of the nurses and doctors I know, but I wish they wouldn't keep telling the same jokes"

" I just want to get it over and done with, Iv got so much work to do for school"

"Yippee this means I get to go to the hospital school, I love it"

These are just some of the comments shared with me, and so in giving them the opportunity to say how they feel, allows them not to carry so many worries with them, it also says to them, you are unique, and your thoughts and opinions do matter.

"Sian I know I said I don't need you, but if your not busy will you help me with my cannula"
I have known this patient for 8 years, they have a active procedural plan in place and on the last 3 admissions they have said " I'm ok I don't need you"

Each of them is unique and ever evolving- and its ok to ask for help now and then.
Giving C&YP the luxury of time and space, during an admission goes towards non- verbal actions of being present and in the moment.

I may have just been walking past the treatment room, and popped my head round the door " Hi, anything I can do?"

For some of those living with a long term conditions- coming into hospital for even short periods of time is a huge disruption in their lives which they are trying to live as non- clinically as possible.

" Please ask me if I would like to talk,then please ask me how I am today"

Sometimes they don't want to have conversations, sometimes they just want to "get on with it" - can we work towards this which does not involve words and conversations- but by actions.

Can we understand why sometimes they don't want to talk, is it because an opportunity hasn't be offered?

Sometimes they want to have a conversation.
Can we as HCP have those conversations freely, openly and honestly, do we know how to say certain things, are we equipped with the right language

This week I was honoured to attend the official launch of MeFirst.org.uk
this is a brilliant organisation set up to assist and support.
To share skills with HCP who work with and are part of C&YP's lives, it was also thought provoking to hear and gave deep meaning when listening to how C&YP would like to be listened to and supported through their lives within health.
It was also refreshing to meet and see how many of us are doing the most amazing job at supporting C&YP, and how together we can continue the movement forwards.
 
Within my role, I can offer time and space, tools to express, set up discussions with other HCPs to understand C&YP - what are their needs and how can we make being in hospital a more rounded experience.

Effort only fully releases its reward after a person refuses to quit.

"With ordinary talent and extraordinary perseverance, all things are attainable"
Thomas Foxwell Buxton.


Sian Spencer-Little