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Patient involvement in collecting patient experience stories

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David Whyte is a patient representative in the East Lancashire Future Hospital development site team. In conjunction with the trust’s patient experience department, he is collecting patient experience stories which are having a profound impact on how the clinical team care for their patients.

A guiding principle for the Future Hospital project team is that the hospital should be supporting care for frail, elderly patients closer to their homes. I believe patients need time to reflect on their experiences of being in hospital. Equally, care for patients does not end on the day they leave hospital.

Some patients can feel inhibited or apprehensive when talking to hospital staff about their experiences. I became involved in capturing patient experience stories in order to help the clinical team continue to learn and improve services for patients. If we could give people the opportunity to speak to someone about how they feel about their care, we could capture some very poignant learning about how successfully the trust is caring for and supporting patients.

I believe patients need time to reflect on their experiences of being in hospital. Equally, care for patients does not end on the day they leave hospital.

David Whyte, patient representative, East Lancashire Future Hospital development site team

Collecting patient experience stories

Together with the trust’s patient experience team, I interview patients in their own homes about their whole patient experience: what brought them to hospital, what happened during their time in hospital and their aftercare.

Setting up a patient interview  

Before a patient is discharged from hospital, a member of staff, either inside the hospital or outside (eg a district nurse), asks the patient –and their carer/family – if they would be interested in being interviewed about their experiences. It is explained that their stories are kept completely anonymous and are used to improve processes so future patients can receive the best possible care.

In my opinion and from my experience, interviewing a patient in their home as a patient representative helps to put them at ease ready for the interview.

Facilitating open feedback

On the day of the interview, I visit a patient’s home and explain again the purpose of our conversation. I emphasise their personal feedback is important to the trust and helps clinicians to monitor and improve care. Patients are asked to sign a consent form and I explain the form will be kept securely at the hospital. I also give patients the opportunity to see and approve their story when it is finished.

Consideration and care   

It’s important to put the interviewee at ease. I like to initiate a relaxed environment on the day of the interview. I speak to the patient about themselves, their families or anything else that interests them. If the person feels like a friend has popped round for tea they will more likely be open and honest about their experiences.

The complete narrative

I begin by asking the patient about their medical history; for example any previous illnesses or chronic conditions. I then encourage people to tell me: why they had to go to hospital; what happened once they were there; how long their stay was; when they were discharged; and how things have been since they returned home. If they have a care package or any NHS visitors is also important to know how this is progressing and if they are happy with the service.

Documenting the experience

The easiest way to preserve the interview is on a small voice recorder.  It can be placed on a table or the arm of a chair while the interview takes place. Taking written notes is very helpful for explaining things that may not be very clear in the narrative and also in establishing an accurate timeline of what happened to the patient.

The final report

After the interview I prepare a summary report for the trust. It’s not always easy for patients to provide a clear narrative of their experience, they may get dates or other information mixed up; this is to be expected if they were very ill at the time. I find it useful to talk to the family or carer, if present, to gain a broader understanding of their experience. I can then use this information to collate a clear, concise report of the whole patient experience. 

Learning from patient experience

The main reason for carrying out these interviews is to learn from patients’ experiences. Look for the hidden story and highlight it. Has there been an improvement in the patient’s experience from a previous illness or admission? Sometimes there is an important element of the story that the patient has not mentioned or is not aware of. For example, the patient may have benefitted from a new working team or procedure, and their experience is proof that the innovation is successful. We hope to build a library of these stories so that we can look back and see if the negatives have been eliminated and any new methods or procedures have been successful.

In setting up this exercise the most important and difficult thing is to find suitable volunteers or non-medical staff who have the time and are willing to carry out these interviews. Some training would be advisable so they can be relaxed and confident in this important exercise.

If you’re interested in reading more about East Lancashire's patient experience stories, Melissa Almond, senior patient experience facilitator has written a blog about how feedback is being used to inform her team's work.