Despite improvements in organ donation rates, many people with kidney disease still have to go into a waiting list for several years for that precious kidney.
We were encouraged at the introduction of a new ‘organ utilisation’ initiative in 2021, at the request of the Secretary of State for Health. The Organ Utilisation Group was asked to look at ways to improve the transplantation system. Kidney Care UK was pleased to play its part, and thanks to those of you who took part in the surveys or focus groups.
The Organ Utilisation Group has now produced the report ‘Honouring the gift of donation – utilising organs for transplant’, which includes a number of recommendations – accepted by the government – designed to make sure as many donated organs as possible are used to save the lives of patients on the waiting list. This report is for Health Ministers in all UK countries. The Government has backed recommendations to improve system of organ transplants in this new report.
Patients waiting for organs will benefit from changes to organ transplant services designed to better match donated organs with recipients, increase the number of transplants and improve the patient experience.
Recommendations to improve patient care include:
- Improved collaboration between transplant centres to increase the number of successful organ transplants saving lives.
- Patients will help design a better system of communication between them and clinicians to make the process clearer and easier to understand.
- Patients and clinicians will work together on how they can communicate more throughout the process. This will include better evaluation of the whole experience, including the emotional and psychological pressures of waiting for an organ, rather than just the clinical outcome.
- Regular feedback from transplant centres to help those on the transplant list to better understand the clinical options available to them and make informed and evidence-based decisions.
- More timely reviews if donated organs are declined and the sharing of best practice between centres to raise standards across the country.
These recommendations include placing the patient at the centre of the service, developing better systems so more organs are used and sharing best practice to raise standards across transplant centres.
A key element to making the most of donated organs is better co-operation between transplant centres. During the pandemic transplant centres improved their communication with each other so organs went to the most suitable patient rather than simply the one who lived closest. This will be built on to increase the chance of successfully matching donated organs to patients.
This follows the introduction of an opt-out system to increase the number of available organs. The report details how to best honour those donations by using as many as possible to save lives.
Honouring the gift of donation – utilising organs for transplant: the Kidney Care UK view
These national recommendations are a great opportunity to really improve the transplantation system, so that it does better to give hope and more transplants to those in need, whilst respecting and indeed honouring organ donors without whom there can be no transplantation.
From recommendations to improve communication, information and discussions with patients and families to recommendations on giving psychological and social care support to people who are waiting for a transplant and following up afterwards, we stand to receive a better experience in the transplant system, and more confidence in living well with that transplant too.
This will only happen when actions are taken in support of the recommendations which the organ utilisation group make here. The actions in this report are straightforward, such as seeking patient feedback on what is going well and what is not going so well and using that to modify practice. Or collecting and publishing data about what different transplant units are doing, for example how long people are waiting to be listed for a transplant. And learning lessons from Covid-19 about collaboration. And, of course, supporting sustainable workforce planning.
The report pulls no punches in reflecting the variations in service delivery and is clear that people in need of a transplant must have equal access irrespective of ethnic, geographical, social status or sex.
Our Policy Director Fiona Loud says: “As co-chair of the stakeholder forum, and the recipient of a kidney transplant, I feel strongly that the voices we heard during the writing of this report need to be listened to. The recommendation that patient-reported experiences and outcomes should be scrutinised and hold weight in the same way as clinical outcomes reflects those voices."
We salute the work of the NHS, and the openness with which these recommendations were made. They offer that small word which is so important when considering organ donation and transplantation, which is hope.