Please Listen – service user voices

 

pandora

The years have past but the memories are etched on my mind. There’s 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 Ive tried to forget. Ive locked up in it too 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. My nights are tormented again and I wonder if it will ever leave me, and sadness overwhelms me. But then light returns and I remember how far Ive come, that this isn’t all in vain because it can help others.

As I try to force the box closed, 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 damaged me so that I will never fully heal, 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 care system we know is great. Especially so in maternity services where money is low, staffing is stretched, demand is high and systems are struggling. Ive been to a number of events lately 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 any really listening to those to whom it matters most? Sometimes I hear comments such as, ‘patients expect too much these days’ or ‘but it makes our job harder trying to give patients 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 are medically safe, conform to policies, to follow pathways and to accommodate the staff, and the trust they are part of. Of course these are important, but have we lost something along the way, the thing that truly matters, that is those who look to us to care protect them from harm, keep them safe, the heart of our services ? 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 cant 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 fact that giving patients what they want is making the staffs jobs harder? The second that services become about anything other than the person being cared for, then we are making our job harder for ourselves. Its not about the patients making the job harder, but the system, the way of working and the culture. What do patients 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 it is done so in a token way. Ive 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. Ive seen those in positions of authority mock the suggestions of patients as too much or unworkable. Ive seen staff recoil in horror at the mention of patients being partners in their own care. I seen doctors scoff at the thought that a patient may make a choice that is different to their advice.  Yet how little is understood of the impact that refusing to listen has. Often it leaves devastation in it path for all, patients and staff alike.

We want things to get better

So I wonder how many others too have like me little boxes in their head, where they try to contain all their pain? I wonder too, how many like me will never be the same, will suffer maybe a whole lifetime because they had care that has left an emotional scar? I wonder too how many know that they have caused this, damaged to someone, maybe beyond repair?

Personally I have lost memories, years and the person I was. I can never get those back.

So I have but one request, Please Listen.

Please Listen to others like me and what it was that hurt us.

Please Listen to the families that have so much to offer that can help us improve.

Please Listen when we try to tell you that we were scared and alone.

Please Listen when we say that the services need to care for ones emotionally too.

Please listen to the journeys forced upon us that we did not chose and do not cast us aside for fear that you may feel ashamed.

Because 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. Remember too that when we stand before you asking you to listen its hard for us to do so. It opens a fresh those wounds, it takes strength that sometimes we find hard to find. We know its hard to hear that you failed us, we know that in many cases it was unintentional but our voices matter. We ask you to please listen because we want things to get better and improve so that others are spared the pain we suffer. 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 a hug that says Im 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.

 

2 comments

  1. Ruth Adekoya says:

    Thank you so much for writing this. Things are changing very slowly and some health practitioners are now realising the value of listening to service users and involving them in service re-design etc no matter how difficult this may be for them. But this should be the norm and not the exception.

Leave a Reply