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Patient Voices: Coming together

Coming together

The stories in the Coming together series were created at Barts’ Health, London, in January and February 2013 at Patient Voices workshops that formed part of the NHS Patient Feedback Challenge Both Sides NOW! project.

The NHS Patient Feedback Challenge is intended to promote existing best practice in patient engagement and feedback. It is funded by the UK Department of Health and run by the NHS Institute for Innovation and Improvement. The Both Sides NOW! project is led by NHS North East London and the City on behalf of the NHS Institute for Innovation and Improvement.

Pilgrim Projects/Patient Voices is a Specialist Collaborator on the project, with responsibility for facilitating the digital storytelling workshops at which patients and staff from the three spread partners create their digital stories.

As part of the project, pairs of Patient Voices workshops (for patients and staff) are being held at each of three Spread Partner sites, one of which is Barts Health, London. During the three-day workshops, participants are helped to create their own digital stories about their experiences of delivering or receiving care.

After the stories have been created within the Patient Voices workshops, the issues within the stories are themed and coded, and the stories are then taken back to the Spread Partner organisation as the underpinning basis for a quality improvement intervention.

More information on the NHS Patient Feedback Challenge can be found here.

Today is not the day
Stuart is passionate about sport. It is like breathing to him. So when undiagnosed pain forces him to give up one sport after another, it is like a slow death. He tries everything. Finally, after ten years, a new doctor takes an interest, listens to what Stuart has to say. A diagnosis is quickly made and, gradually, with the help of medication, peer support and a clinical trial, Stuart has been able to resume the sports that make his life worth living.

Only connect
Working as a clinical psychologist, Susan enjoyed helping people to manage difficult issues. A move to palliative care seemed to be an opportunity to see patients as individuals rather than as a condition or diagnosis, but it also taught her the importance of connection and how difficult it is to simply be with another human being.

Night shift
Working as a security guard at a hospital meant Darius didn’t normally have much contact with patients. But when a suicidal patient began slashing his own throat in A&E Darius stepped in to try to talk to him. Realising they came from the same country meant Darius could speak to him in his own language as he tried to reassure the patient. The hours Darius spent sitting with the patient left a lasting impression on him.

Diane believed that we should never judge or assume, but her dealings with the medical profession haven’t worked out that way. Investigations into persistent anaemia meant frequent contact with GPs and hospital doctors, but it was the indifference of a hospital registrar that made Diane feel she was being judged and assumptions made about her.

Precious time
Observing the time spent by one elderly and vulnerable patient in Outpatients, Gail wonders why there cannot be more joined up thinking in the NHS and why the policies and budget codes are so restrictive that they hinder rather than help staff to give the best care.

It is bad enough to have to spend a night in hospital, even if a fractured ankle and shoulder mean that you are, effectively, immobilised. Matters are not improved when Nigel is placed in a mixed ward where one of the other beds is occupied by an elderly woman, confused as a result of her condition and unable to communicate with staff, resulting in a disturbed night for all. But the most upsetting thing of all is the loss of the woman’s dignity in a ward full of men.

Morning express
Going into hospital is rarely something to look forward to. For Sue’s mum, an independent and active woman in her 80s, it is the beginning of a decline that has left her unable to pursue any of her old hobbies and interests. Unappetising food, unresponsive staff and lack of attention to her physical, mental and emotional needs contribute to her decline. But care doesn’t have to be like that and, in another hospital, her treatment is careful and caring, restoring her humanity and supporting Sue, her daughter and carer.

As a person in good health who has managed to avoid hospitals for 64 years, Nigel’s experience of A&E is not likely to encourage him to return in a hurry. Insufficient and inconsistent pain relief, poor communication, unresponsive staff and long delays contributed to the unsatisfactory experience. Not wishing to make a formal complaint, Nigel reflects on what needs to change in order for staff to work more constructively – and compassionately – with patients.

Up the bum
Stomach pain after a holiday in France and a night out with friends is initially attributed to teenage overindulgence and alcohol poisoning. It is several days before George’s burst appendix is diagnosed, necessitating an unpleasant procedure to insert a tube to drain the poison from his abdomen. Delays in diagnosis, inadequate pain relief and all the indignities that accompany severe infection have left George with an abiding loathing of hospitals.

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