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Patient/Carer stories

Do you have a story to share?

A patient’s or carer’s story can reveal a great deal about the culture of the organisation and the quality and effectiveness of the services we provide.

By linking patient experience with clinical effectiveness and patient safety it provides us with the opportunity to develop a clear picture of quality across the organisation and by actively listening to patients and their families and responding to what they say, the Trust aims to develop a caring and compassionate culture which is underpinned by the delivery of safe, effective and responsive care.

We want to ensure that patients and their families feel informed, supported and listened to so that they can make meaningful decisions and choices about their health care, therefore our aim is to gain an understanding from the patient or their family’s perspective of what good care looks like, what is not so good and what we can improve to make a patient experience more positive.

Collectively patients’ stories will enable us as a Trust to build a picture of what it’s like from a patient viewpoint as our focus of attention will be on the patient as a whole person rather than a clinical condition.

We will celebrate and learn from both the positive and less positive experiences and share good practice and developments across the organisation.

Patient/Carer stories can be delivered in a number of ways:

• Attendance by the patient or family member to tell their story directly
• A written story
• A short video /digital media/audio recording

We will ensure that any patient or family member who chooses to share their story is properly supported in doing so, therefore they will be fully informed of what to expect by a member of the Patient and Public Engagement Team who will establish a relationship with the individual to provide support and guidance before, during and after their story has been told. In addition to this the patient will also have the right to be supported by an advocate.

Listen to Dee’s story https://www.youtube.com/watch?v=DftVhTalfcs

Diane’s story

“When I was asked to talk about my experience as a carer, I thought long and hard about what I wanted to say and how I could help.  At the same time I became aware of a charity called ‘Heads Together’ which is the Virgin Money London Marathon Charity of the Year and they are aiming to create millions of conversations in 2017, to change how we talk about mental health and help reduce the stigma associated with it.

“So here goes… My dad has suffered from what is called ‘manic depression’ or bipolar illness since I was 21 years old.  This was when he had his first ‘breakdown’. When my mum was alive, she supported him very well and he was never hospitalised, however, when she got dementia my dad became her main carer.  The stress of caring for my mum for four years as she gradually deteriorated precipitated a major episode of mental ill health and dad was hospitalised in 2013.

“My sister and I stepped in to care for both mum and dad.  For me, this was the most stressful period of my life and a time when caring and worrying whilst holding down a full time job caused me a lot of anxiety.  At the same time, there was pleasure and honour in taking care of my mum up until the point when my sister and I knew that we couldn’t provide 24 hour support and my mum went into a care home. 

“This was the most heart rending and difficult decision of our lives.  My dad was in hospital and both my sister and I had full time jobs and families, but were spending time every day with both parents as well as trying to hold everything together.  I was never a full time carer, but I have absolute admiration and respect for those people, who become the full time carers of their loved ones.

“I wanted to talk about my dad’s experience of mental illness, as he has a vulnerability to extreme stress which causes him to relapse with a severity that makes him become socially disinhibited and suicidal.  This can happen very quickly and he has been detained under the Mental Health Act twice in the last three years. One of the most difficult things I encountered during the times my dad was on a mental health ward, was when the nursing staff told me that, during a period of time when my dad was talking about and demonstrating suicidal thoughts, that he was “acting out” and had a  “personality disorder”. 

“As a mental health nurse of 32 years and as my father’s daughter, I knew this was just not the case.  My dad’s illness was causing him to have these extreme thoughts and behaviours and these would settle down and disappear as he got better.

“I would hope that by talking about my experience, all staff would look at their patients as the individuals they are, with their own life stories and recognise that their families are the people who know them best and are in the best position to inform mental health professionals of the small, but significant changes in behaviour that indicate that they need professional help.

“If I were to change one thing of significance, it would be that all staff understand and respond better to carers and family members.    Alongside this, I would like to see them work in true partnership with families and carers wherever possible, to provide compassionate care to people who need and rely on our services.

Listen to Diane’s story here: https://youtu.be/CY2-dIHB_Z4

By Dianne Graham, Rotherham Care Group Director.

Dianne Graham.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Paul’s story

Paul Jenkins is a carer who speaks about his wife, Janet, their journey through our services and the importance of engaging with friends and family wherever possible.

Listen to Paul’s story here: https://www.youtube.com/watch?v=Dd8JCvKeRk8

Michelle’s story

Michelle is a service user who talks about how the All Age Service we provide has had such a positive impact on her. She is a younger woman who was originally admitted to the Adult Inpatient Service but because of her frail physical condition she was assessed and transferred onto Coniston Ward, our Older People’s Service.

Listen to Michelle’s story here: https://www.youtube.com/watch?v=AJj3Fcv3AOM

If you think you have a story you would like to share through one of our forums, please contact Cheryl Watkinson, Membership and Engagement Facilitator by email cheryl.watkinson@rdash.nhs.uk or telephone free on 0800 015 0370 to chat about the available options.