To walk alongside Fear.

Emotions are such powerful parts of the human race, they can be positive, bringing with them a sense of being overtaken with wonder, they can be all consuming with negative thoughts, they can be fuel, and can sustain us, and make us feel like the great and powerful.

They can also frustrate, they can be a hurdle and stop a person making progress, for making plans and forging an adventure- in a way that we cannot work out.

They can impact on our lives, within our work, we can use them to become someone else for a while, to become lost in another world, to create a space only known to us.

I wanted to write a little about one such emotion that I have witnessed, felt and have observed both in my working and personal life.

Fear

It prevent change, prevent improvement, prevent safety.

I have experienced it- to be so powerful that no other thoughts or conversation can be had, that it becomes physically impossible to move, and that there seems no way out of it.

It seems to take its energy from the most negative place, and even those with immeasurable strength can be disabled by it, but for some it can be switched and changed into feeling powerful, and sometimes the actions from that can be both positive, and destructive.

For some who have never experienced it- I have heard comments as they struggle to understand its power, and how it can be "allowed" so much "airspace".

We should never undervalue a persons feelings- or ride rough shot over them- that is when we are in danger of missing the point, of not listening.

Fear- is described as an unpleasant emotion caused by threat or danger, pain or harm- however it is also a vital response to these circumstances, we use our past experiences to shape our fear, and any trauma derived from that.

When working with children and young people, they hold their previous experiences in the forefront of their minds, this shapes their responses to new experiences or a repeat of something that has happened before- and they remember, both the physical and emotional impact this had- they can relive this over again and again.

Acknowledging that this is real- is so important, as this allows them a way of gaining some strength and some control over their biggest fears.

Fear can get "in the way" of change, of asking a different question, and of questioning an action, to bring about positive change.

If children and young people feel they are not supported- they can become fearful, in the same way perhaps it can for health care professionals wanting to support change for them, and others.

Maybe we could look at Fear as a way of the brain saying "there is something here for you to overcome"

To do that - requires strength and support of others.

Perhaps, we need to ask more questions.?

Perhaps, we need to listen.?

Perhaps, we need to change?

But without acknowledging true feelings of fear- if they are shared with us- we cant begin to understand.

"I learnt that courage was not the absence of fear, but the triumph over it.

The brave man is not he who does not feel afraid, but he who conquers that fear"

Nelson Mandela (1918-2013)

Sian Spencer-Little

Connections-Engaging-Empowering

Connections.

Lots of things have resonated with me over the last few weeks- whether it is because I am at home- and having the time to read and explore- or that I am able to deeper understand what it's like being on the otherside of healthcare- as a service user, I don't know, but using this blog to highlight key areas of my work and my passions has opened up a whole new world.

Normally I am the person- the point of contact to talk with- share- listen-explore and create a recovering and healing environment.

I am part of a team, and we strive to give explanations that are always from the point of care and supportive- leaving opportunities to further explore and ask questions.
We are the team who acknowledges how difficult it can be sometimes.
We listen, we hear, we act
We form connections, we share stories, we listen to experiences.

The last few weeks have been about connections, engagement and empowering.

The frustrations at the long automated messages I have to listen to or the several phone calls in a day I have to make to chase appts or results..
I have identified the following.....

How interactions and meetings matter.
How different they are when it is face to face.
Hearing a human voice.

Empowering- being enablers in service development.

What is offered - is there a wide range of resources for feedback- so engaging with diverse groups, and sharing findings and views to those that can connect.
Can this influence change.

Engaging.

Taking the time to talk and listen

An awareness of what it's like for an individual - to walk in their shoes and not to do what we think they might want.

Empowering.

Finding ways that offer all patients an option to express- their feelings and how it was for them- isn't easy but by engaging and asking the question- we learn so much- what they share is so rich and has such depth that we really are doing a dis service if we don't act.

We have already seen the powerful impact engaging with patients across NHS and CCG Trusts can have on services, how they are offered and how and who they reach.

#Hellomynameis

What matters to you- is the starting point.

My work experiences and roles have enabled me to sit alongside amazing children, young people and their families- I have found that sometimes individuals and organisations can over think ways to connect- making it complicated, and in turn this prevents the connection, because its to difficult, people cannot be reached, and speaking with many they feel "too far away"

When engaging with children, young people and their families its always important to engage in a trusting relationship- so even the "tough stuff"can be voiced, talked through, and explored, if that is what is needed.
As health care professionals the most powerful learning opportunities come from this meeting and engagement.

Equally the space to explore powerful emotions- and the acknowledgment that we cannot always change them, or take them away, but we can hold them in safety, and acknowledge difficulties, fear, pain and sorrow.

If not, we know who we could ask to continue that supportive relationship.

Communicating is tricky- but often it is not how much is said, but how each person hears it, recognising that each person's words are of value,  and perhaps the way forward is to use the power of "share, inform, impact"

Starting the process of engagement to some may feel like taking a step in the dark- with no one to guide you- but that really isn't the way it is.
There are many national organisations who work within engagement with children and young people at the very centre of their work- this allows for such a richness that cannot be found anywhere else.
I would recommend, if you haven't already, checking out just a few- there are many amazing orgs doing such powerful work-take some time to explore some of the following.

Perhaps you have some local projects that are beginning to start outreach engagement work, your NHS Trusts and CCGs are great places to start.


NHS Youth Forum- www.england.nhs.uk
@NHSYouthForum

RCPCH- www.rcpch.ac.uk
@RCPCH_and_Us

Fixers- www.fixers.org.uk
@FixersUK

Me First
www.mefirst.org.uk

There are also some powerful parents, children, young people and families, who share their experiences with us, hoping that their stories will impact and make change happen for others, below are just 4- they have taught me so much.

@YvonneNewbold
@Adsthepoet
@leighakendall
@Mothers_Inst_UK

Final Thoughts.....

"We can all become beacons of sense, creating small ripples, carrying a pebble in our pockets- that could start a slow positive wave- its already begun.

Chatting for that extra 5 minutes- allows connection and conversation, it takes courage, at times, and you may reveal your own wounds, but there lies the wisdom.
Clarity, respect and taking the time to check information shows we are present, and a willingness to engage"



Sian Spencer-Little

The Importance of Stories, and the Creative Arts.

 "The stories we tell about each other matter very much.
  The stories we tell ourselves about our own lives matter.
   And most of all, I think the way we participate
   in each others stories is of deep importance"
           Jessica Jackley

                                                                                                                                           

For a child or young person sharing their stories can be the hardest thing they have ever had to do-and for the listener it can be powerful.

For the listener it can highlight lived experiences, a deeper understanding of what it is actually like in the "real-world" for that child or young person.

The difficulties faced, the raw emotions, the battles fought and lost, and the core feelings.

Listening to a child or young persons voice is the greatest thing we can do as health care professionals - listening to a families story- the impact of a hospital admission, of care received, of a diagnosis- is key to understanding, to walking alongside, to support, to empower, to care.

When these stories are shared they are of deep importance, they matter greatly, and so our role here is to sit alongside and listen, for then we may gain a little insight into their world, to provide human contact, face to face.

Sharing space with a young person is not something that we can assume- but being invited speaks volumes, once there the art of listening, without interpretation is key.

 " I remember getting off the bus, and it was raining- I had no umbrella so was getting soaked.

   I remember feeling so sad, like I was an empty can of coke, but so angry I didn't know what to do- or where to go"

 This was just the beginning of this young persons story- told quietly, in a small space, within a clinical area, whilst sharing a creative activity- it began half way through the time we had together, no pressure, using creative tools to empower, and an adult that didn't make any judgements- and acknowledged how tough, and hurtful is had been.

The narrative, the story, the lived experience - is of deep importance in healthcare across all care groups, but also amongst all health care professionals.

It can provide a level of teamwork, of shared learning and skills, of research gathering and of support.

It can also be a way of reaching out, of nurturing and of caring for each other.

As a Specialised Play Practitioner a lot of my working day is spent alongside children and young people, sharing their mini stories, and making up stories as a way of working through fears and worries about a hospital procedure or experience.

We do this in healthcare, in order to gain a deep understanding of our patients and client group- but do we do this enough?

Do we recognise the importance of stories and storytelling?

Stories are powerful instruments- they enable us to set the scene, introduce characters, and fire up the imagination of children and young people.

They may allow us to introduce puppets, instruments and costume- and although the stories may be profound, and the words used emotive- they are just as important- as a way of expression, and sometimes of working though the really "tough stuff"

Stories can also be uplifting, funny, and have a sense of achievement and growth- sparking the creative journey.

Each type of story has it place in health and social care- to challenge us, to highlight core issues-  to worry us at times, or make us passionate about its subject, but for the person trusting us enough to share -we must always listen.

Shared space and experience is a powerful thing- it should not be underestimated- it may just make an impact on a much bigger storyline- yet to be written.

   "A child's voice, however honest and true, is meaningless to those who have forgotten how to listen"

Sian Spencer-Little

Specialised Play Practitioner.

3 Little Questions

3 Little Questions 

          "Do you hear what I hear"?

      "Do you see what I see"?

 Do you feel what I feel"?

Working within paediatrics is very different in many ways to adult care- yet there are many similarities, a sentence of confusion for some!

I spend many enjoyable hours sharing skill- and ways of working with both student doctors and student nurses- children, young people and families.

I love the energy they bring, a different view point and new ideas.

For student nurses, medical students and peers I thrive on their passion for learning, but I am also aware that for the creation of ideas, the opportunity for learning, the environment should enhance that.

The same can be said for children and young people and their families coming to stay or visiting the hospital.

The environment plays a huge part in setting the scene, right from the start.

Dr Alison Tonkin  (@TonkinAlison) with Kath Evans (@kathevans2) recently brought together the evidence base supporting the argument that environments of care, built specifically to focus on the needs of children and young people- deliver better outcomes.

If better outcomes were achieved through environmental changes- just imagine what could be achieved for health but also for growth, learning and development.

1. Are we making information and the opportunities to ask questions accessible, both to our patients and those learning and working with us?

2. What provisions are there in place for using many forms of communication?

3. Are we nurturing that curiosity- providing platforms for expression in many shapes and forms? 

Are we using creativity to its full potential?

3 Little Questions, 3 Times the Impact.

To nurture- is to care for someone or something while they grow, expand, gain confidence- to foster learning, to support and to assist them on a path of growth and discovery.

However in order to nuture others - the practise of self care is just as important.

The same can also be applied to the support offered to children, young people and families within the hospital environment- especially at times of stress and fear.

So in order for us to facilitate and to enhance a environment that  fundamentally "nurtures" we could think about the following.

1. Sounds, noises, images and the explanations given.

2. Language used, communication formats, accessibility.

3. Welcome, is it child and family friendly, learning and exploration friendly.?

4. Is it supportive, how do we listen, do we actively respond?

5. Does it encourage sharing , being respecting and enhance ideas?

This is all food for thought.

But the possibilities are endless.

Sian Spencer-little

A Silent Wish.

When those around us need help

When those around us are in pain.

We should listen for the sounds , when they ask again,we should watch for the signs.

For we may have missed their silent call for care.

We may have missed the very essence of their need, and slowly they disappear.

They may be our patients, they may be our colleagues.

 It could be us, as we send a silent wish.

We all spend so much time - reaching out with kindness and care, that even in the deepest times of despair and discomfort - we miss the importance of what is being said.

I have spent many months this year calling to my colleagues, picking up the banton of patient first and experience-  waving it frantically at times.

Sometimes it is taken and great things have happened- and at times it has fallen to the floor.

Over this last year there have been huge strides, and there have been times for me that have been so difficult and distructive, that some days I have felt like I have carried the biggest of boulders in my bag.

Throughout the year I have grown, discovered a strength deep within,that I didn't think was there, have collaborated with inspiring peers- and have learnt that being true to what you believe and feel is both freeing and frightening in equal measure.

I recall a conversation with a family. 

"You see Sian it's easy to "act" like you are giving the best performance of your life, but really you want and need the permission to strip that costume and at times  feel naked and all consumed in order to let it all out"

I thought about how honest this family had been with me- how trust plays a huge part of patient care and support.

Then I reflected on my month, my year.

I thought about how do we really allow families to feel free enough to be able to strip away there performance - and allow us to see the core of need.

I haven't got all the answers- but I know that one way could be providing an environment that allows honesty and opportunities - that listens and that doesn't promise the magic wand action.

I have been reading lots and collaborating with great minds- I have also been listening - and taking time to explore authenticity- and how this impacts patient care.

My silent wish for the new year- to continue with planting those seeds- of providing them with food and fuel- of nurturing them and supporting the start of the growth.

Wishing you many moments of peace, joy and happiness in equal measure.

Sian.

Conversations that matter.

"Vulnerability is not a weakness, and the uncertainty, risk, and emotional exposure we face every day are not optional.
Our only choice is a question of engagement."
Brene Brown 2012.

When we work with and engage with children, young people and their families we are seeing them at there most exposed, raw, and vulnerable.
As health care professionals, we may walk alongside them, to offer a hand or to simply listen and to help carry that emotional suitcase that is at bursting point, but we do not have the power to make everything better- for it all to go away.

But we can impact the experience.

It is at this point we engage with them, and those first moments need to be as honest and kind as possible- however having walked alongside many I feel that as an individual I have to also be at my most exposed and at times vulnerable.

I don't know what they will ask me, or what they want help and support with?
I don't know what path we shall walk, and if there may be many twists and turns in it.
Brene Brown  talks about choices and Daring Greatly- I feel that as an individual I dare greatly most days, I also observe my colleagues do this sometimes on a hourly basis.
As health care professionals we have codes of conduct, pathways and policies to follow that are there not only to protect ourselves - but also to ensure the safety of patients and clients we work with.

But they do not mention over exposure or vulnerability as we would understand it- so we have to make sure we have pathways in place to support us as professionals. 

But sometimes we are thrown curveballs- and we don't see them coming,  however experienced we are.
Having conversations that matter are all exposing and engagement is the key, without it the most important elements are missed, and the family or individual you are caring for also gets lost in the unknown.

I recall some recent conversations with a family, the things that matter, the vulnerability of the conversation - the courage shown to talk - and to say the most emotively charged things, in a space that can be held- in the middle of a busy ward environment - it was not easy, but it was spontaneous, and organic in its content.
How do we know what to do and say in these moments?

I can only share my experiences- and over the past few weeks I have had to spend time looking at my vulnerability and to not be afraid of it, to have the courage to expose it to some of my colleagues.
It can sometimes be misread, it is can also at times become over consuming- and feels quite alien to me.
To feel in a vulnerable state, also throws up feelings of anxiety, being frightened, out of control, unsure, and can be exhausting.

Recalling tough conversations that matter with children and young people, and their families, these feelings are expressed in many different ways, but when striped back their sense of feeling exposed and vulnerable- translates into fear and anger as they are unable to control what happens next.

Conversations that matter can be minutes in length, seconds, it can be a comment as you engage in an activity , whilst doing observations, walking past- but the impact may be powerful.
Over the last 8 years- I have watched as large groups of doctors approach children and young people at bedside.
Those that decrease in size.
Say hello to the child/young person.
Ask how they feel.
 They are the ones who dare greatly, and have courage to hold the vulnerable - which equally transforms the relationship, the art of it.

The parents and families we work with are exposed to the very core.
 To have a sick child in hospital, and not know what's happening- or what day of the week it is.
 They have emotional suitcases that are bursting at the seams.

In order for us to support them, we need to be supported.

Vulnerability is not a weakness, it is a true strength, our children and families will feel a great sense of this when in hospital- so our conversations that matter will invite that strength to be exposed, and we will do our best to bring purpose and meaning to events for them- hearing the unheard, and being ok with that.


Sian Spencer-Little.

In Health, In Trauma, Play is essential.

Play is an essential component, it is instinctive and powerful- in the development of the whole child and must continue wherever possible in sickness and in ill health, trauma and both when there are long or short term issues.

It is critical and crucial in helping to support children and young people - to provide coping strategies and opportunities to explore, to find out

the mechanisms of why we each react differently to environments and procedures.

All members of the team whether that be in healthcare, support work, overseas volunteering are involved in the wrap around care elements of children and young people within health/aid settings they can utilise play and it's components.

Members of the Specialised Health Play Team hold enhanced responsibilities, experience and rich knowledge to share and promote essential skills.

Judy Walker shared with us that essential functions of play are built into the fabric of the child and young persons journey through the hospital and health experience.

Normalising Play is at the very centre of a child's world- to have it removed - to have been part of a traumatic experience or for play to be unobtainable means to deprive and remove the ability to explore, engage and experience.

Children and Young People accessing hospital and health care often feel disjointed from the experience- when I talk about this I also want to include the following.

Recent world challenges throws up questions.

I wonder how children and young people feel ,who have had to leave the place they know, the people they know, where they play, to be led away to travel, on such a long and at times frightening journey- How do they feel?

To leave their homes without the adults whom they love and trust who provide a safe loving feeling.

They may have lost the ability to play and in turn are not able to express or play out their worries?

They may have become so shut down and withdrawn that to experience joy, have fun, or smile- is lost.

This will have a huge impact on the way they develop, grow and for their stories to be told- we have to listen, sometimes to the unheard- and sometimes this takes a long time.

Listening to the unheard is often difficult - for the HCP's involved - but how difficult and frightening for the child or young person and their families to tell it- to let us into their inner world.

We have to do this within healthcare too- to assist the healing journey of trauma - to past experiences and look at how it impacts the future of their care.

It's important when working with children, young people and their families that we look at how long a hospital stay will be, will they need regular input within a clinical environment .

Individual Play Programmes are a way of listening to what they have to say- how treatments make them feel- what works well for them to support preparation and distraction- likes and dislikes.

A lengthy stay in hospital or repeated hospital admissions may lead to a decline in reaching developmental milestones - Developmental Play Programmes can help and support to address this.

 They are formulated to ensure delelopmental progress is maintained, and opportunities to explore,have fun and maximise learning in a non- threatening way.