Summary of report content
Healthwatch Liverpool undertook a research project on the support needs of transplant patients after having the operation, as a result of feedback from one of their volunteers who had gone through a transplant themselves. They spoke to 6 people in total.
It was clear from all participants’ stories that their transplant journeys had a strong psychological, emotional, physical, social, and sometimes financial impact, and continue to impact participants’ lives in these ways. As transplant is not a full cure for their kidney issues, participants will have to continually factor their general health, their kidney health, medication burden, and the complications of being immunosuppressed in their ongoing daily lives – on top of managing their work lives, family and intimate relationships, and other stressors people commonly face.
Participants struggled with a lack of awareness about recovery from transplant and what it is like to live as a transplant patient, resulting in some inappropriate comments and assumptions from others, due to lack of empathy and understanding. This lack of awareness was widespread, affecting their interactions with the general public, friends, and family, as well as the wider medical system, particularly their interactions with GPs and the A&E service.
Additional difficulties related to a constant need for patients to advocate for their own medical needs when dealing with the healthcare system. Participants shared their concerns and experiences of bearing the burden of responsibility to raise issues and problems they were experiencing with their recovery or with their medications, as these discussions were often not started by medical professionals. Participants sometimes struggled to have their voices heard by medical professionals, and spoke passionately about the importance for medical professionals to engage in two-way dialogue, so they could have a say in their treatment and ensure their needs were taken into account.
Participants also felt a strong drive to be able to return to ‘normal’ life, which was hampered by the ongoing nature of their conditions, and the need for their transplanted organs to be frequently monitored by their renal teams. This sometimes led to them over-exerting themselves to make the most of their new opportunities.
Transplant was a significant change for participants, and in many cases, it was a process they navigated without being signposted to formal and professional help and support. Where participants received organs from live family donors, and when they had young dependents, their families also went through that process with them lacking support. Support that participants felt could be useful to them ranged from online or face-to-face peer support, talking therapies with trained counsellors, and practical support with rebuilding their lives, returning to work, and paying for medication or transport to frequent outpatient appointments. Participants also expressed that support and physical rehabilitation in the period immediately following their transplant surgeries would have been useful.
The report includes six recommendations about sources of support, establishing care pathways, discharge letters; signposting people to support and the support services needed.