Organ transplant aftercare and support in Scotland Transplant patient survey report

2. Background

“It is important that patients receive the appropriate aftercare following their transplant and that they have access to the right healthcare and support over the longer term.

“We would like to thank the working group set up to lead on the survey as this has allowed us to gain valuable insight from those transplant recipients who shared feedback about their care and who offered suggestions for improvement.

We are committed to working with transplant units to implement the recommendations in this report to ensure that patients continue to get the best possible care and support.”

Mr John Casey and Dr Iain Macleod

Scottish Donation and Transplant Group Co-chairs

In 2021, the Scottish Government published its Donation and Transplantation Plan for Scotland: 2021-2026. The Plan was developed with members of the Scottish Donation and Transplant Group (SDTG) and sets out recommendations in seven key priority areas. One of the key priorities is Transplant Recipient Support and Aftercare.

A working group, set up by the SDTG, was tasked with reviewing whether existing aftercare services need to be improved for some or all organs to ensure appropriate support across Scotland.

Patient feedback provides an important source of information about whether transplant services are meeting the needs of their patients. This patient survey was therefore developed by the working group, aiming to capture an up-to-date picture of patients’ views on transplant services in Scotland and with a view to developing more patient-centred services.

NHS National Services Scotland’s National Services Division (NSD) commissions transplant services for people who live in Scotland. Transplant services are provided by the following transplant units:

Edinburgh Transplant Centre, Royal Infirmary of Edinburgh

Kidney (adult), liver, pancreas, islet cells transplants

Glasgow Transplant Unit, Queen Elizabeth University Hospital, Glasgow

Kidney (adult and paediatric) transplants

Golden Jubilee National Hospital, Glasgow

Heart transplants

Freeman Hospital, Newcastle

Adult and paediatric heart and lung transplants

2.1 Previous transplant recipient surveys

In 2020, NSD conducted a patient survey which identified a number of areas where patients’ experiences could be improved. These included communication between transplant units, local specialists, GPs and patients; the availability of information and advice; and access to emotional and psychological support for patients and their families.

During the Covid-19 pandemic, many services adopted new ways of seeing patients, offering remote monitoring and remote/online consultations. It was important to explore the impact of these changes on transplant patients, to determine the best service delivery methods for the future.

2.2 Survey methodology

The survey was targeted at adults, aged 16 and over, who had received a solid organ transplant(s). It contained both closed-ended questions and open text questions that explored patients’ experiences of transplant services, focussing on the areas identified for improvement and on methods of delivering outpatient services.

The survey was supported by the Scottish Government and hosted on the Scottish Government’s website for stakeholder surveys. A patient information sheet was included, the survey was translated into six languages and an Easy Read version was available. The survey ran for a period of 14 weeks between 25 September and 29 December 2023.

Letters with information about the survey were sent to all the transplant units involved in managing patients who live in Scotland and details were added to transplant unit websites. Charities involved in supporting transplant recipients were asked to share information about the survey on their websites and social media.

Paper copies of the survey, and freepost envelopes, were sent to the transplant coordinators, who invited patients to complete the survey when they attended outpatient clinics. The survey could be completed online or in paper form.

2.3 Responses

Overall responses 569

Online responses 188

Paper copies 388

Descriptive statistics are used to report the findings from the closed-ended questions, while open-text responses were analysed using a thematic analysis approach.