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Patient Voices: Dignity and respect

 

Using Patient Voices digital stories to promote dignity, respect and privacy

Article 8 of the Human Rights Act (1998) gives the right to respect for private and family life, home and correspondence. Privacy and dignity are fundamental to the well-being of individuals within the health care system and every member of the nursing workforce should prioritise dignity in care, placing it at the heart of everything they do. When dignity is absent from care, people feel devalued, lacking control and comfort. They may also lack confidence, be unable to make decisions for themselves, and feel humiliated, embarrassed and ashamed. Providing dignity in care centres on three integral aspects: respect, compassion and sensitivity. In practice, this means:

Some hospital staff need additional training on the issues of dignity, respect and privacy. ‘This is particularly true of staff caring for older people or those with mental health needs.’ (Commission for Healthcare Audit and Inspection, 2006). In order to build dignity and respect for service users into the training of professionals, we need to know what stories of dignity and respect service users carry with them. The stories in the Dignity and respect series have been created in a series of workshops that began in November 2011. The series of workshops is sponsored by Manchester Mental Health and Social Care Trust, and is intended to explore the experiences of service users.

The Patient Voices reflective digital stories created are being shown at Board meetings in order to draw those present back to the stories behind the decisions they take, and are being used in the recruitment process of staff up to and including the level of Chief Executive, thereby bringing service users’ experiences into a key area of service provision and development. This project with mental health service users will also feed into the development of learning materials for new practitioners.

The experiences of one of the storytellers, and the work of Patient Voices and MMHSCT to improve services was featured on the BBC Radio 4 ‘Today’ programme.

Since beginning their work with Patient Voices, the Trust has reported significant performance benefits, including:

As a result, the project reached the finalists’ stage in the 2013 HSJ Awards in the category ‘Innovation in Mental Health‘. There is an article on the use of the stories in recruitment in the Health Service Journal

In it’s October 2015 report on the Trust, the Care Quality Commission said:
“The trust was one of the first mental health trusts in the country to introduce the patient stories initiative which involved a range of patient stories being used at the trust board meetings for learning and sharing purposes. Patient stories highlighted how services had responded to people’s care and treatment needs. We observed a trust board meeting and saw the powerful nature of starting the formal board meeting with one of these stories.”


Imagine…
This is Derrick’s story.

Metamorphosis
This is Versil’s story.

The good the bad and the ugly
This is Sue’s story.

Broken heart, new start…
This is Philip’s story.

A funny thing happened on the way to the asylum
This is Roy’s story

From the woods to chemical bloods
This is Paul’s story

Staying afloat
Staying afloat is Caitlin’s second story

The madness in my head
This is Rizwan’s story

Mistakes do pay!
This is Perry’s story

This too shall pass
This is Heidi’s story

The formation of information
This is Amgad’s story

Chain of compassion
This is Edith’s story

I’m sad, mad, bad…and now a good lad
This is James’ story

Stains
This is Terry’s story

Maybe I can too!
This is Caitlin’s story

Tears of joy
From a happy childhood, Gary moved into a period in his life dominated by the tragedies and traumatic events associated with psychosis and schizophrenia. Only now, after many years of support and hard, painful work, has he come to a place where he can be grateful to the universe again.

Depression
Tom’s life was one of creativity, activity and music. The, in his 30s, the tragedies of the outside world began to seep further into him, and he began to withdraw from it in an attempt at self-protection. His depression took away so many parts of his life, basic things he had to learn again with the help and support of services. But now, he’s back in the world again, back with dreams for the future once more.

Back from the bottle
Alcohol and homelessness entwine around Satpal’s life, dragging him onto a downward spiral where a night in a police cell is actually a welcome chance to get warm, clean up and eat a decent meal.
Unfortunately it also leads to longer periods in jail, until he manages to get onto a ladder out of damaging behaviours provided by NHS Manchester Mental Health and Social Care Trust.

Hidden journey
Tom’s life, and physical and mental health have been shaped by several traumatic events and the care, or lack of it, that he has received. Now, after many years of hard work, he reflects on what how his life might have been different if he had received the sort of care that is available to him now.

Happier than ever
Alcohol becomes a support for Marie through difficult times and relationships. But then it betrays her, leaving her with dependencies and mental health issues that persist until she gets proper, personalised, integrated care.

Trust
Any relationship, whether personal, professional or caring, must be based on trust if it is to be effective. Loris has journeyed from Italy to England, and yet is still searching for mutual belief and trust that can underpin an effective relationship with psychiatric and psychological services.

May you live in interesting times
Our lives have many components – our home, our job, our neighbours. All of them can affect our physical and mental health. If the many agencies, the police, local councils, care organisations, that are tasked with supporting us through life fail to act promptly and effectively when problems start, then the result can be traumatic, life-changing and, ultimately, most costly for everyone concerned.

Recovering
Anne was not unfamiliar with challenges in her life, but when her son was diagnosed with schizophrenia and she became his carer, the inconsistency and lack of connectedness of support services took their toll on both them. However, better support, effective medication and more connected support services mean that now both she and her son are better able to move forward into the future.

Can you hear what I say?
Marsha really appreciates being listened to. When Marsha goes into hospital to be treated for her heart condition, staff listen and she receives good treatment. When she goes into hospital for her mental health condition, however, it’s a different story. Marsha reflects on how much difference it makes when staff do take the time to listen – and hear what patients and service users are saying.

Listen! Believe! Act!
Faye doesn’t really remember jumping off the Kingsway Bridge. But she remembers the injuries resulting from her fall, and she remembers the frustration with health professionals who failed to listen to her and disbelieved her suicidal intentions and. Fortunately, Faye is happy to be alive and looks forward to a career as a psychologist!

Me and my fight
On his journey through substance abuse, homelessness and schizophrenia, Iain has had plenty of opportunity to become familiar with the mental health system. Here he shares the some of the benefits of his experiences as a set of helpful hints and tips to staff as well as service users coming into the system.

Look back in anger
Despite caring for her son, who was born with diabetes, for 45 years, Lynn was not given information about him and was not able, in turn, to convey information that might have been helpful in determining the most appropriate care for him. Years of drug use led to schizophrenia and Hepatitis C which, combined with poor communication and lack of joined up care, had tragic results.

Everyone’s mum
Seher works at a women’s mental health and well-being group. One elderly member of the group – Auntie – didn’t speak English and when she was admitted to hospital, Seher supported and visited her as often as she could. Seher finds it difficult to forget the lack of care and support Auntie received and how it could so easily have been her own mother in that situation.

My guest house
Mel recalls her experiences of the Iran-Iraq war and how she watched the bombing aged three. Settled in the UK since the age of twelve, Mel reflects that her experiences have made her stronger and more resilient. She wonders what message she can pass on to her own three-year-old daughter and how she can help her to balance British and Iranian culture.

Butterfly
Before her arranged marriage, Nighat was a confident and feisty woman. After years of abuse, she left her husband, not realising she was exchanging her battle with her husband for one with her culture and community. Eventually she began to believe she really was a bad person and illness and depression followed. Attending her first Patient Voices workshop gave Nighat the courage to seek help and her confidence is finally beginning to return.

The light of my eyes
Pedram reads a letter to his daughter, telling her of his early life in Iran, his family’s move to the UK and their struggle to adapt to their new life.

Are we alone?
Rawaid describes his father’s decline into isolation and depression, following the death of Rawaid’s mother. He reflects on how we suffer for those that we love.

The art of listening
Shabana works in community development, helping refugees, asylum seekers and those who have been abused, raped and trafficked. It is a stressful and demanding job but one which she finds immensely satisfying as she can see the impact she has on people’s lives.

Reach out – others need you
Gertrude is inspired by her mother, who always helped people in her community. Today Gertrude describes herself as having ‘helping syndrome’ and her work with BME communities has given her great satisfaction, knowing that she is making a difference to people’s lives.

Freedom
Learning to be a mum was hard for Brenda. Her cries for help went unnoticed and eventually led to a spiral into drug and alcohol addiction. The support of her own mother enabled her to avoid her children being taken into care, but it wasn’t until her daughter became pregnant that she broke the cycle of addiction and became ‘clean’. Now a loving and involved grandmother, Brenda has learned from her daughter how to be a mum.

Breakthrough
Overcoming obstacles at school was hard for Dee because her dyslexia wasn’t understood. But she has learnt that the key to achieving goals is mental, physical and spiritual preparation. Her determination to overcome the set backs she faced when growing up have helped her to become stronger and given her courage to achieve her goals and pass on her strength to others.

Still standing
After thirty years of living with a mental health condition, Cathy has realised that her recovery isn’t about achieving a ‘perfect life’, but one that enables her to get through the difficult times and treasure the happy times. The Manchester Mental Health and Social Care Trust has supported Cathy in her recovery and becoming a tutor at Recovery Education has given her an insight into other people’s journeys, as well as her own.

Rites of passage
Like any mother, Lindsey expected her son to follow the normal ‘rites of passage’ – 18th and 21st birthdays, A levels, graduation, driving test and girlfriends. But Tom’s behaviour was becoming increasingly bizarre and eventually Lindsey arranged for Tom to be sectioned. Diagnosed with schizophrenia and with no insight into his condition, Tom remains in hospital and Lindsey has become a fighter for causes in his name, determined never to give up on him.

Loneliness
For Nighat, the days can be long, silent and filled with nothing but loneliness. Every day is just another test of her determination to survive, another challenge to her dignity and self-respect as she engages with more and more services that try, but seem to fail her.

Doing time
The killing of her husband changes Tracey’s life into an unrecognisable nightmare of alcohol, medication and emotional agony. In desperate need of support, she prays for a miracle or to be sectioned. When, after serving two and a half years for manslaughter, her husband’s killer returns to live in the same area, the only support service that seems to understand her needs is Support after Murder and Manslaughter (http://www.samm.org.uk)

My song…
As someone who has needed and benefited from support himself, Alan is well-placed to see his partner’s need for support – so why is it not available from other services for her when she needs it?

Folie á deux
Chris’ wife and daughter were mental health service users. When they commit suicide on the same day, Chris’ tragedy is compounded by the responses of the Police and the support services, but now he is at last finding ways to move forward.

Skip rat junkie
For many years, Justin’s life was a cycle of alcohol abuse, homelessness, and life on the streets. He lived on the streets, eating from bins, and struggling to find a way to get back from a life full of blanks. Eventually, being sectioned put him into the start of a process through which he has struggled and grown until he is now using his experience of life on the streets to help others.

Labour of love
The struggle to obtain and provide the right, compassionate and loving care for his parents is, like so many other struggles for dignity and respect, and exhausting and debilitating one for Henri. But it is a struggle he pursues with love and devotion, and describes lyrically and poetically.

Eight days a week
Dawn is both a mental health service user, a carer for a mental health service user and a mother. Her experience is one of isolation and lack of recognition for the complex nature of the caring she delivers and the care she needs. Her response has been to use social networking to build a community of experience and practice at: http://www.facebook.com/MakingMentalHealthPositive and https://twitter.com/MMHPuk

My NEADs
By the time a wrong diagnosis is reversed, Anne has had to survive many years of physical and mental side-effects from an inappropriate treatment regime. Yet, somehow, she has maintained her own dignity, kept the respect of her family – and prevailed.

The child within my Bipolar
When a beloved son asks whether your bipolar is his fault, how do you answer? With dignity, self-respect and gratitude for the part your son has played in helping you through the journey of recovery.

From cabbage to king
Suddenly, one day, Graham is in a different mental place. His head feels different, the world is a different and challenging place – and recovery seems a distant goal. But Graham is a fighter at heart, determined to get through this battle – and to share his experiences so that others can get through the struggle as well.

Panic button…
Michael has been labelled and put into many different boxes over the years because of his sexuality and HIV status. He cares for his parents for many years, but the system needs to show its respect for his efforts by matching them with its own. Where is that support and respect in the last weeks of his mother’s life?

This too shall pass
Terri’s life had been a roller-coaster ride of stress, and anxiety that came to rule her life, creating a cycle of self-destruction and self-harm. Only when she starts Dialectical Behavioural Therapy (DBT) does she begin to learn how to practise and apply skills that allow her to take back the control, dignity and self respect that her borderline personality disorder had denied her.

Part of the world again
Is the denial of someone’s illness the ultimate removal of dignity and respect? Bob’s alienation, pain and experiences are put aside by professionals for forty years before his mental health issues are finally acknowledged with a diagnosis. Only then, with good support from his Mental Health Trust and restored faith and faith in himself, can he become part of the world again.

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