Text of letter sent by APPKG Chair Madeleine Moon MP to the Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care, regarding living donation manifesto and finally the progress and issues facing the BAME community.
Increasing living kidney donation and progress on BAME matters
I am writing to you about two important issues related to organ donation. The All Party Parliamentary Kidney Group (APPKG) reviewed living kidney donations and BAME matters at its meeting on 24 October 2018.
I am pleased that progress has been made on both of these issues, however there is still more we can do. I have highlighted some issues which I hope we can address together. I would be grateful if you could meet with me, members of the APPKG and representatives from the National Kidney Federation to discuss these issues further.
Living kidney donation
We welcome that the decrease in the number of living kidney donors over the last 3 years has stopped, while in 2017/18 there was a small increase. In January 2018, the APPKG published a Manifesto to increase transplantation. The Manifesto set out seven recommendations and we subsequently sought responses to these from relevant bodies. Thus far, we have received written responses from Jeremy Mean (Department of Health), Elizabeth Buggins (Chair of the 2020 Oversight Group), and Lisa Burnapp (NHSBT).
It would be useful to also receive a written response from NHS England, particularly as they hold the funds and are responsible for monitoring against the specification.
We currently have considerable unexplained variation in the living donor activity among transplant centres (in 2017/18, Belfast had 36 living transplants per million of population and Bristol and Leeds were at 8 pmp). What steps are NHS England taking to address this?
My second request relates to the organ donation strategy after 2020, when the current strategies come to an end. We need to start developing a new strategy immediately so that there is a smooth transition. Our view is that this time we should develop a single combined strategy for donation after death and living donation. This is because we need increases in donors from both. As deemed consent is implemented in England, we must ensure that living donation does not decline as an unintended consequence. Consequently, could you provide me with details about the Government’s plans to develop a combined post 2020 organ donation strategy? The APPKG and the NKF would welcome the opportunity to be involved in such a process.
I am glad BAME matters are now higher up the Government’s agenda. The commitment from Jackie Doyle-Price has led to some significant changes which are most welcome. The introduction of the faith specific organ donor card, the refreshed BAME campaign on organ donation and the greater involvement of the National BAME Transplant Alliance (NBTA) are examples of real progress. The introduction of the Community Investment Scheme is also welcome as the APPKG Manifesto on BAME issues had called for this a number of years ago.
My first request to you on BAME matters relates to strategy. While short term campaigns are welcome, we require a longer-term and comprehensive strategy. We currently do not have an overall BAME strategy for organ donation. The APPKG Manifesto on BAME issues and the “Ending the Silent Crises” report by Eleanor Smith MP have both called for this.
Having no strategy in place simply because it may be difficult is not acceptable. I am sure you will appreciate the importance of developing a strategy and a plan for its implementation, so that we can measure progress accurately and do not have to rely on short term funding for individual campaigns. I would urge the Government to establish a BAME strategy on organ donation.
Finally, we must improve the collection of data related to organ donation by ethnicity and begin to collect data by religion in order to establish more effective and targeted strategies. Currently, NHSBT publishes an annual BAME report on organ donation which is limited in value as the data published is inconsistent. Some data uses
categories such as Asian, while others use BAME, and there is no data collected by religion. It is unhelpful to group complex communities under such simplistic categories as there can be significant differences among them. Also, we know that faith is an important consideration for many people in considering organ donation. As a result, we would encourage the Government to improve the collection and publication of data on organ donation related to ethnicity and to start collecting data by religion. Once again, the APPKG and the NKF are ready to work in partnership in developing such a strategy.
I look forward to your response to this letter and hope to share your reply with members of the APPKG and the NKF.
Madeleine Moon MP