‘May your story be a page in someone else’s survival guide’

The years have past but the memories are etched on my mind. There are certain things you can’t erase, forever burnt into the recesses of your mind, scars that tell a story of all that you have endured.

Sometimes the memories you can lock away in a little box, in your mind. My box is black, adorned with gold vines and leaves circling it as if attempting to keep it sealed. Inside is all the pain, indignity and anguish that I’ve tried to forget. I’ve locked up the cruel words, the harsh treatment and the events that I can’t bear to recall.

Sometimes however the box tries to open, it tries to release it contents to plague me once again. The memories creep back, sometimes losing me as they play out like a movie. I question things again, question what I did, why things happened as they did, and then the self doubt starts, the guilt, the blame and sadness overwhelms me. Then I close the lid tight again and remember how far I’ve come, that my experiences can be used for good and to help others.

As I force the box to close, so beautiful on the outside, yet full of darkness within, I wonder, I wonder if those that caused my pain, that used cruel words to hurt me, that let me down and damaged me remember too? Do they recall their actions those years ago? Or was I just another face in the sea of faces they have cared for? Do they realise the effect they have had on me, on my family, on my life? Did they go home at night and think about me and how they had cared for me? Did they realise it would be with me forever?

Are we asking too much?

The pressures on the health and care system we know is great. Especially so in maternity where money is low, staffing is stretched, demand is high and systems are struggling. I’ve been to many events, workshops and meetings our the years where improving services has been the quest, and yes it is a quest because it feels like searching for the most precious prize, doing so despite many challenges. Yet sometimes the greatest thing that is missed is just to Listen. To listen to those that the service is for, who need the care that is provided and who depend on it to help them have a positive outcome.

While there is talk on budgets, staffing, commissioning and training, while there are discussions on pathways and policies, and the endless debates on what needs to change, is anyone really listening to those to whom it matters most? Those who use the services.

Sometimes I hear comments such as, ‘their is too much expected these days’ or ‘it makes our job harder trying to give individuals what they want’ and my heart sinks.

No one would deny that staff are stretched and struggling and no one would deny that everything from money, to time, to resources are in short supply. Yet as I look around the room often full of those with the power and responsibility to bring about change, I see that the connection to those that matter has been lost.  It has been consumed by the quest to make services that conform to policies, follow pathways, mitigate risk and accommodates the staff and service. Not just this but also a building of services that are not based on actual needs of those that use them, but ideals put forth by those who feel they should be a certain way, or carrying on with services that have been working a set way for years. Often ones voicing ‘this is how we have always done things’.

Of course some of these are important, but have we lost something along the way, the thing that truly matters? What about those who look to us to care for them, protect them from harm, keep them safe? Are they truly at the heart of our services?

The Cost?

Burdened and weighed down, many are struggling just to give any care at all, but at what cost?

The cost is damage, damage to people that can’t be wiped away. Damage that can last a lifetime. Damage that they wake up with and go to sleep with and even then sometimes haunts their dreams. Damage that seeps into every part of their life, that changes who they are and strips them of memories, happiness and life.

Are those being cared for really asking too much? Is it too much to have care that is kind, that is compassionate, that does not cause lasting emotional damage and respects your basic needs as a person, as a human being? Is it too much to ask that ones are conscious of the words they use, or whether or not they send people home with scars not only physically but mentally?

What about the comment that giving individualised care is making the job harder for staff? The second that services become about anything other than the person being cared for, then we are making our job harder for ourselves. It’s not about the service user making the job harder, but the system, the way of working and the culture. What do our service users need? Is it not again kindness, compassion and support? Is it not to treated with respect and to be communicated with? Are these not basic needs of all humans no matter who or where they are?

Yet despite this I see that those who need to be listen to are often excluded, or worse, it is done so in a token way. I’ve seen those that try to advocate for families silenced or told they don’t understand the system and the challenges, and so are brushed off as of no consequence. I’ve seen those in positions of authority mock the suggestions of service users as too much, unrealistic, inconvenient or unworkable. I’ve seen staff recoil in horror at the mention of service users being partners in their own care. I’ve seen doctors scoff at the thought that a service user may make a choice that is different to their advice.  

Yet do we understood of the impact that refusing to listen to those using our services has? Often it leaves devastation in it path for all, patients and staff alike.

Also when starting new services are we including service users? Are they the ones that we go to and seek their lived experience from? Or even do those with such experience lead and even become part of those services? I saw a wonderful example in Australia where a perinatal mental health service was entirely made up of those with lived experience. Where each person had a story of struggle but also recovery. Where the vastness of knowledge but also the reality of living with perinatal mental health was invaluable. Where what was developed was based on what was actually needed, and what those who built the service knew would have made a difference to them.

So the question this raises is do we truly value our service users? Do we value the wealth and gifts they bring to us? Do they feel appreciated and valued, part of the team and wanted?

We want things to get better

I know like me there are sadly many others who have like me little boxes in their head, where they try to contain all their pain. Personally I lost memories, years and the person I was. I can never get those back. I can however share my experience to try and prevent this happening to others. Like me there are many who have their stories to tell, who have vast wealth in the form of lived experience. Who can give gifts that will make our services better than we could imagine.

So I have but one request, Please Listen.

Please Listen when we open our hearts and share with you our stories.

Please Listen to what it was that would have made a difference.

Please Listen to those have so much to offer that can help us improve care.

Please listen to the journeys forced upon us that we did not choose.

do not cast us aside for fear that you may feel ashamed.

We know it maybe hard to hear that you sometimes failed us. When you go home at night you may do so with peace, but you may have stolen someone else’s, leaving them with scars that cannot be seen. We know that in many cases it was unintentional but our voices matter, do not cast us aside for fear that you may feel ashamed. Remember that there will also be much to share about what was supportive and needed. So we ask you to please listen because we want things to get better and improve.

Remember too that when we stand before you asking you to listen it’s hard for us to do so. It opens a fresh those wounds, it takes strength that sometimes we find hard to find. It means opening those boxes we have long sought to seal shut. Let our words seep into your hearts and move you see through our eyes.

We ask you to please listen because not all things can be fixed with a policy or a pathway or a bigger budget, no somethings are improved with things that cost nothing at all just a smile, a kind word, an encouraging well done or quiet space that says I’m here, your not alone, you will get through this.

So Please Listen, please make our voices count, because making things better is something we can only do together.

Please Listen – Service User Voices