New report published on organ transplant services in Scotland

The report published by NSS and the ALLIANCE shares the importance of feedback to drive service improvement.

NHS National Services Scotland’s, National Services Division, as commissioners of specialist services in Scotland, conducted a transplant recipient patient survey in 2020. To further explore results of the feedback received, the ALLIANCE was asked to host a series of focus group discussions with people that are resident in Scotland, and who have lived experience of engaging with solid organ transplant services as patients.

The focus group discussions were held on the 20th and 21st of April 2022 on Zoom, and were hosted by the ALLIANCE’s Integration, Engagement and Lived Experience Hub. A representative from National Services Division shared the results of the survey, and highlighted the importance of patient feedback to drive service improvement and the development of more patient centred transplant services. Participants were divided into break out rooms, each assigned to a group relating to the organ they had transplanted. People were invited to share their experiences of engaging with services for:

• Heart transplant
• Islet / Pancreas-Simultaneous Pancreas and Kidney (SPK) transplant
• Kidney transplant
• Liver transplant
• Lung transplant

This report outlines the key points that people raised about their experiences around four themes:

• Communication, education, and advice
• Transplant centres and travel
• Emotional and psychological support
• Moving forwards – future service delivery (with a focus on digital and telemedicine)

The aim was to capture what is going well and areas of improvement moving forward. The following general themes emerged across all breakout rooms:

Most participants spoke about the organ transplant journey as “life-changing”
People explained that very shortly after their transplant they felt their quality of life had improved, and that a transplant offered a ‘gateway’ to recovery from illness. As one participant put it: “You get your life back.”

Many shared stories of a positive relationship with the organ transplant team
Most participants explained that this positive relationship was felt throughout the organ transplant process, from the moment a diagnosis was made. Many spoke fondly of their transplant coordinators, some even referring to medical staff as “family” for the support they provided. Some shared examples of good joined up work between medical teams, contributing to overall positive experience.

People appreciated when information and advice was easy to understand and were they were given enough time to understand information given to them and ask questions.

Overall, people’s experiences of organ transplant services are varied and mixed. The ALLIANCE recommends that further engagement with people with lived experience, of a diversity of backgrounds, is carried out to fully understand the full range of experiences before making improvements to services. This includes engagement with people who may not have opportunities to take part in online discussions such as the one carried out by the ALLIANCE, or who may not have been able to complete the NHS National Services Scotland 2020 patient survey. Engagement activities also need to be carried out with those who may have communication support needs to ensure their experiences are also properly captured and considered when developing patient experience improvement plans. It also needs to be noted that participants who attended the focused group discussions hosted by the ALLIANCE were all at very different stages of their organ transplant journeys, some having had a transplant over a decade before the focused group discussions took place, whilst others were still on the transplant waiting list.

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