Collecting patient experience stories: guidance from East Lancashire

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East Lancashire Hospitals NHS Trust's senior patient experience facilitator, Melissa Almond, leads the collection of patient experience stories across the organisation. Insights gathered from these stories are improving care for patients and helping the trust to better involve patients in their care, which is a key principle of the Future Hospital model.

For the last 4 years it has been a priority for the patient experience team to manage the collection of patient experience stories. Speaking to patients and learning from their personal experiences of being in hospital and their aftercare provides key insights into how an organisation is performing.

How to collect patient experience stories

In 2014, we developed a set of guidelines to help staff understand the purpose of collecting patient stories and to provide a basic process for them to follow [available to download below]. Staff are responsible for:

  • identifying a patient, carer or family member who might like to share their story
  • explaining the purpose of a patient experience interview
  • collecting contact details of those who are happy to have a longer form interview about their experiences.

The patient experience team have organised patient experience training for staff, inviting the experience and engagement lead from the Advancing Quality Alliance (AQuA) to lead this training.  In addition, we are happy for staff to shadow us to see how it’s done. From there, the member of staff can begin to conduct their own experience interviews with patients with our support.

The needs of an individual have always been paramount when collecting patient experience stories. Some people prefer to come to hospital to tell us their story; others feel more comfortable knowing they can stay at home. We consider what is best for that person at that time. As David Whyte writes in his blog, ‘care for patients does not end on the day they leave hospital’. It is important to give people the time to reflect on their healthcare journey in order to understand what happened to them and if any improvements can be made.

The stories are incredibly useful and timely resources which can be used in staff training and as a way for teams to monitor and measure how their quality improvement projects are progressing.

Melissa Almond, senior patient experience facilitator at East Lancashire Hospitals NHS Trust

Sharing patient experience stories

The stories are incredibly useful and timely resources which can be used in staff training and as a way for teams to monitor and measure how their quality improvement projects are progressing. Stories are shared at our trust’s managerial board meetings. Sometimes a patient will come and attend those meetings and present their story in person which is extremely powerful.

I began working with the Future Hospital frailty project team in September 2016. We have recruited volunteers who, together with the support of the patient experience team administrator, go out onto the wards to collect patient feedback via surveys. There is also the opportunity here to ask patients if they would like to do a story when they are home from hospital.

Patient experience stories are shared at frailty steering group meetings. Recently, a daughter shared her reflections from her father’s stay in hospital where he died at the age of 90. Important lessons about end of life care were learnt from her experiences. The story has also been shared with the end of life care facilitator and will now be routinely used at the ‘Care of Dying’ study day where it will be read out and used to spark discussion around good quality care and how we can make things better.

It is important to give people the time to reflect on their healthcare journey in order to understand what happened to them and if any improvements can be made.

Melissa Almond, senior patient experience facilitator at East Lancashire Hospitals NHS Trust

Arising themes

Every month we analyse the patient experience feedback we have received from the frailty care surveys and stories and collate recurring themes. We use this information to inform our patient involvement work and other initiatives around the trust.

Themes are reasonably consistent every month with communication and involvement being the most common issues patients discuss. Between 1 Jan and 27 March 2017, 44% of patients surveys said they did not know who to contact about any changes or worries they may have or any questions about their care. Patients don’t always have consistent information about care processes, are not always given information in plain English free from medical jargon or have sufficient involvement in decisions about their care.

Improving communication with patients

A recent initiative to come from the patient surveys and stories was a workshop led by medical director Dr John Dean, who was appointed as clinical lead for the RCP’s new quality improvement hub earlier this year and the patient experience team. There was representation at the workshop from each of the divisions together with representatives from healthwatch, carers services and a patient representative. There was a presentation of the feedback from the frailty care survey and patient stories and the emerging themes. Based on this feedback, we began to agree what patients needed to know and how it should be communicated to them. This was an extremely helpful exercise as we were able to identify the requirements for developing resources for patients, carers and families to address these issues so that their information and involvement needs are met.

Melissa has shared a number of resources with us to illustrate the guidelines and processes in place to collect patient experience stories. East Lancashire Future Hospital development site patient representative David Whyte has written a blog entitled 'Patient involvement in collecting patient experience stories' discussing how to conduct patient experience interviews.