Organ transplant aftercare and support in Scotland Transplant patient survey report

1. Executive summary

“Ensuring that every patient gets the right support and aftercare post-transplant is really important.

“I would like to thank the transplant units, the clinical teams and staff in the NHS Boards for the excellent existing aftercare services that they already provide to their transplant patients.

“I’d also like to thank those who took the time to complete the survey and share their views on how these services can be improved in order to meet the needs of transplant recipients now and in the future.”

Jenni Minto MSP

Minister for Public Health & Women’s Health

Transplant recipient support and aftercare is one of the key priorities of the Donation and Transplant Plan for Scotland: 2021-2026.

In order to understand whether existing aftercare services are meeting the needs of solid organ transplant recipients across Scotland, a patient survey was undertaken to gain feedback and identify any areas for improvement.

In general, the patient feedback was overwhelmingly positive, indicating that transplant services are highly valued by organ recipients. However, the survey results highlighted a number of areas where patients’ needs are not met consistently, leading to specific recommendations to ensure appropriate support is in place for all transplant recipients across Scotland.

Patient survey population

• A total of 569 transplant recipients completed the survey.
• The respondents represented a wide range of transplant recipients, from age 16 to over 80 years old.
• Transplant patients from all health board areas of Scotland were represented.
• The respondents provided feedback on the transplant services for all solid organs (liver, kidney, heart, pancreas, islet cell, simultaneous pancreas and kidney). However lung recipients were under represented with only four responses received from these patients.

1.1 Communication, education and advice

This section explored patients’ experiences of communication (with their transplant teams, local specialists, and GPs); receiving information about their transplant and knowing how to get advice.

Communication

Feedback about communication with transplant teams and local referring teams was positive at all stages of the patient’s journey.

Communication between patients and GPs was generally less positive.

Information and education

Respondents were positive about the information/education received from the transplant teams and reported the information was easy to understand.

Advice

Respondents were able to contact their transplant team for advice; however there was limited awareness of online information with only two thirds of respondents aware of information available online about living with a transplant.

Online information

When asked how helpful they found specific websites, only a third of respondents reported finding NHS Blood and Transplant (NHSBT) and their local transplant centre websites helpful and less than a quarter reported finding patient and charity support group sites helpful. However, this may reflect the ways patients choose to access information and indicate that they had not looked at the websites, rather than that they had not found them helpful.

1.2 Emotional/psychological support

This section explored what emotional/psychological support transplant recipients and their partners/family members needed and received.

The survey results identified that there was some unmet need for emotional/ psychological support after transplants:

• Before transplant, most recipients reported that their needs had been met by their local referring team and their transplant team.
• After transplant, most recipients reported that their needs were met during the first year, but the percentage fell after that period.
• Around 10% respondents felt that their needs were not met after transplant by one or other healthcare team or from other sources.

Sources of emotional/psychological support

There was positive endorsement of the role of transplant coordinators, transplant team, peers and GPs in providing this sort of support.

The results showed that the two main sources of support were transplant coordinators/specialist nurses and other members of the transplant team. Peer support was ranked highly, as was support from GPs. Feedback showed that support from clinical psychologists, charity groups, psychiatrists and counsellors was rated less highly or not used as much by patients.

Respondents commented on the positive role played by fellow patients, third sector and social media transplant groups, and their own faith or spiritual beliefs.

Some commented on the lack of emotional/psychological support and their difficulties in accessing mental health support. A number also expressed a strong preference for face-to-face and one-to-one support as well as the importance of support for family and carers.

Travel

The majority (80%) of patients reported no difficulties travelling to their transplant centre.

1.3 Transplant aftercare

Remote consultations can improve access to services for transplant patients and reduce the need for travel to appointments but require internet access and digital literacy to operate successfully. The survey results demonstrated:

A high level of digital access:

• 92% respondents were able to access the internet from home
• 84% respondents can access the internet on a mobile device

Limited experience of remote consultations

• Telephone consultations are used more widely than video consultations.

A preference for face-to-face consultations

• 59% respondents preferred face-to-face consultations as they allow better communication
• However, others preferred remote consultations due to reduced travel requirements

1.4 Remote monitoring

Transplant patients need to be monitored regularly, including blood tests to check on how their transplanted organ is working and the level of immunosuppressant medication.

Access to local phlebotomy services (blood tests)

• 83% respondents were able to have blood tests taken locally
• Most attended GP/primary care, others used a local hospital or community hub
• Some had difficulty accessing the service via their GP or GPs refused to take blood tests

Remote monitoring

• 31% respondents used a home health monitoring system to monitor their health information.