Dear HM, Assistant Coroner A Farrow Re: Regulation 28 Report, 27th February 2026 On behalf of NHS Blood and Transplant (NHSBT), we would first like to take this opportunity to offer our condolences to the family and friends of Maisie Kate Almond, following her death at the Leeds General Infirmary, Leeds on 2nd October 2024.

We note the matters of concern;

1. Evidence from a consultant paediatric hepatologist that there is a national shortage of donor livers generally and particularly for children in the “super urgent” category.
2. The clinical guidance not to utilise cardiac death donor livers in such cases due to the poor historical outcomes has narrowed the pool of suitable donor livers to those arising from brain deaths. Altruistic living liver donations are generally not available for super urgent cases.
3. The number of donor livers has reduced by a third and the effect is that, historically, a donor liver could be expected to be made available within 48 hours, the wait has now extended to up to a week. That delay gives rise to a clear risk that lives will be lost due to the unavailability of suitable donor organs. We will respond to the matters of concern as noted above as 1,2 & 3.

1. National shortage of donor livers generally and particularly for children in the “super urgent” category The UK, like many other countries, is facing ongoing challenges with both donor numbers and consent rates. Although organ donation activity had been steadily recovering in the years following the pandemic, this progress has been offset by a continued decline in consent rates. The most recent UK data for 2024–2025 shows that the pool of potential donors is now 18% smaller than before the pandemic, and family consent rates have fallen from 68% to 59%. As a result, April of last year saw the highest number of people on the UK transplant waiting list ever recorded. While the number of patients waiting is now slowly beginning to decrease, the reality remains that there are still not enough donor livers available to meet clinical need. The three paediatric liver transplant units in the UK regularly split suitable adult livers to transplant children. In the UK, split liver transplantation (usually for one child and one adult) is always prioritised from, high-quality, donors after neurological death testing (DBD) who are Patient Safety Team Newcastle Blood Centre Holland Drive Barrack Road Newcastle upon Tyne NE2 4NQ

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NHS Blood and Transplant is a Special Health Authority within the National Health Service.

aged <45 years and weight < 90 kg. These livers are always offered to centres for splitting to maximise organ usage for the paediatric population. The donor profile in the UK has changed significantly, with donors now generally being older— the current average age is 53. In addition, donor BMI has increased. These shifts, combined with a smaller and less healthy donor pool, reduced family consent rates, and circumstances of death that limit donation, have collectively decreased the number of livers suitable for splitting.
2. DCD Livers in Paediatric liver transplantation We have also seen a shift in donor type across the UK, with an increasing proportion of donors after circulatory death (DCD) compared with donors after brain death (DBD) over the past two years. This trend has not been observed previously, and it appears to be continuing. Notably, similar patterns are being reported in other countries. As a result of this shift, fewer livers now meet the criteria for splitting, as DCD livers are not routinely split due to the increased risk of graft failure. While all donor types carry some degree of risk, splitting a DCD liver presents particular challenges. Nevertheless, DCD donors remain an important source of organs across the UK. Advances in emerging technologies may in time support the safe splitting of DCD livers, but at present, national guidance continues to recommend splitting only DBD livers. Historically splitting a DCD liver is associated with high rates of biliary complications and small for size ischaemia seen across the world. Isolated case reports, conference reports and centre experience from Spain and Italy suggest feasibility of splitting DCD livers from young donors (<40) with short functional warm ischaemia and prolonged stable Normothermic Regional Perfusion (NRP), with good lactate clearance. This is not evidenced across the world as it is not routinely done, but when it is facilitated, it is done through in-situ splitting. DCD-NRP splitting is currently regarded as experimental and any such activity in the UK will sit under a service evaluation needing innovation governance and possible research ethics. As NRP is rolled out across all retrieval teams DCD-NRP splitting can be evaluated
3. Reduction in donor livers and extended waiting time

Points 1 and 2 above explain the reasons for the current shortage of donor organs.

It is impossible to predict the availability of a liver for the super urgent category both adult and children. For children we are usually waiting for a suitable liver to enable liver splitting or a liver to become available from a child or young adult suitably sized match to enable transplantation. Unfortunately, the ongoing shortage of donor organs has further extended waiting times, and in this case, a suitable liver did not become available on time.

Action being taken NHSBT is working to ensure that we address the challenges in the donation pathway. Some of the various initiatives underway include but are not limited to:

• Marketing, Communication, and Societal Action: Continue with strategies to raise awareness and improve public support for organ donation.
• Clinical Practice: Enhancements in clinical protocol and practice to widen the pool of potential donors being reviewed. Alongside this, work to look at neurological death testing improving access to, and consistency of testing has commenced. This work will endeavour to increase the number of DBD donors in the UK, with the ultimate of ensuring more organs can be available for liver splitting and cardiothoracic transplantation. Streamlining the family approach to enhance consent rates being reviewed. A2

NHS Blood and Transplant is a Special Health Authority within the National Health Service.

• Coroners working group: continue to collaborate with HM Coroners, Police, Forensic Pathologists and Medical Examiners to ensure we can maximise the number of potential organ donors, where possible. This PFD is scheduled for discussion at the next meeting.
• Increased use of novel technologies for DCD donation.
• Introduction of Assessment and Recovery Centres (ARCs) for organ donation. ARCs improve organ donation by utilising specialized machine perfusion to assess, repair, and recondition "marginal" organs previously deemed unsuitable for transplant. These centres aim to increase the number of viable organs, reduce transplant waiting lists, and allow for safer, high-quality organ transplantation.

We are very sorry that the call for transplant did not come for this child. We have shared the PFD with the wider donation community to reinforce the importance of considering organ donation in all appropriate clinical circumstances. Please do not hesitate to contact us should you have any further questions about our service.

Your sincerely

Director of Organ and Tissue Donation and Transplantation

Medical Director Organ and Tissue Donation and Transplantation

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Dear Mr Farrow,

Thank you for the Regulation 28 report of 27/02/2026 sent to the Secretary of State of the Department of Health and Social Care about the death of Maisie Kate Almond. I am replying as the Minister with responsibility for organ transplantation.

Firstly, I would like to say how saddened I was to read of the circumstances of Maisie Kate Almond’s death and I offer my sincere condolences to their family and loved ones. The circumstances your report describes are concerning and I am grateful to you for bringing these matters to my attention.

The report raises concerns over:
1. A national shortage of donor livers generally and particularly for children in the “super urgent” category.
2. Clinical guidance not to use donation after circulatory death (DCD) livers.
3. A reduction of around one third in donor liver availability has extended waiting times from within 48 hours to up to a week.

In preparing this response, my officials have made enquiries with NHS Blood and Transplant (NHSBT) to ensure we adequately address your concerns. I note NHSBT will also be issuing a direct response.

I recognise and share your concerns about the current constraints on donor liver availability, particularly for children requiring super urgent transplantation. Liver transplantation depends on the availability of suitably matched deceased donor organs, and factors such as size, blood group and clinical urgency can mean that a compatible organ is not always found in time.

While it is important to acknowledge that not every death can be prevented, the issues you highlight underline the need for continued scrutiny of transplant pathways, organ utilisation, and the systems that support timely access to suitable A4

organs for those most in need, alongside continued research into treatments for liver failure that may help stabilise patients and bridge the gap while a suitable donor organ is identified. In this response, I will outline actions underway to improve donor organ availability and access to transplantation.

National shortage of donor liver availability and access to transplantation

There is a national shortage of donor livers, which continues to place pressure on access to transplantation and extend waiting times, particularly for patients requiring urgent care. This shortage is driven by a combination of factors, including declines in donor numbers and donation consent rates, as well as changes in donor demographics. Regrettably, in this case, a suitable donor liver was not made available in time for Maisie Kate Almond.

The Department recognises that delays in access to suitable donor livers, particularly for children requiring super urgent transplantation, present a significant clinical risk. The actions set out below are intended to address the risks you have identified and to reduce the likelihood of similar circumstances arising in future.

The Department is working with NHSBT and wider system partners to improve access to transplantation and reduce waiting times by increasing the overall supply of donor organs and maximising the use of those available. This includes work to:

a. Increase the overall supply of donor organs: While the availability of donated organs is variable, increasing registration on the NHS Organ Donor Register and improving family consent rates may increase transplant opportunities for people on the waiting list. In cases such as Maisie Kate Almond’s, where altruistic living donation was not possible and an urgent deceased donor liver was required, a higher number of successful donations may have increased the likelihood of a suitable organ becoming available.

Organ Donation Joint Working Group (ODJWG)

• The Department and NHSBT jointly established the Organ Donation Joint Working Group (ODJWG) to identify actions to maximise the number of lives saved through deceased organ donation, build on positive developments, such as legislative change, and learn from less successful approaches.
• The Group brought together national and international experts in organ donation, including donor families and service providers, and set out ten actions to improve deceased organ donation in the UK. These actions, set out in the Group’s final report, A bolder, braver approach for organ donation in the UK, published in January 2026, are now being taken forward by NHSBT and system partners.

Education and public awareness

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• NHSBT undertakes a range of activity to raise awareness of organ donation, particularly in communities where donation rates are lower. This includes targeted work during Organ Donation Week, partnerships with trusted organisations such as the National BAME Transplant Alliance, and a Community Grant Programme which support community and faith‑based organisations to drive awareness and understanding of organ donation.

• In addition, the Department for Education revised the Relationships, Sex and Health Education guidance, to make education on organ donation a mandatory part of the secondary school curriculum from September 2026, helping to improve understanding and enable young people to make informed decisions about donation.

b. Maximise the use of available organs: Alongside efforts to increase organ donation, the Department has prioritised work to improve organ utilisation. Even where organs are donated, barriers in assessment, preservation or system capacity can mean that opportunities for transplantation are missed. Improving organ utilisation is therefore critical to reducing delays and ensuring that patients waiting for urgent transplants have the best possible chance of receiving a suitable organ in time.

Implementation Steering Group for Organ Utilisation

• The Department established the Implementation Steering Group for Organ Utilisation (ISOU), which concluded in December 2025, to deliver the recommendations of the Organ Utilisation Group and maximise opportunities for transplantation. The Group, which concluded in December 2025, focused on improving collaboration across transplant services and supporting fair and equitable access to transplantation.

• The ISOU has supported wider system improvements, including strengthening clinical leadership, standardising pathways, promoting collaboration between transplant centres, and enabling innovation in how organs are assessed and allocated. Clinical Leads for Organ Utilisation have been established in all transplant centres to drive local improvement and shared learning.

• As the ISOU concludes the Department is committed to maintaining momentum to continue to improve organ utilisation and achieving better outcomes for patients and families across the UK.

Assessment and Recovery Centres

• Through the ISOU, the Department provided funding to support the development and mobilisation of Assessment and Recovery Centre (ARC) pilot schemes. ARCs are specialist centres designed to assess, repair and optimise donor organs prior to transplantation, A6

with the aim of improving organ utilisation, reducing unwarranted variation and supporting more transplants to occur.

• The ARC programme is being developed as a national multi‑organ approach, with early pilots for lungs, liver and kidneys launching in phases during 2026. ARCs have the potential to deliver significant numbers of additional organs available for transplantation each year, thereby helping to improve access to transplantation and reduce waiting times.

DCD Livers in Paediatric liver transplantation

The Department recognises the concerns raised in your report about the impact that limitations on suitable donor liver availability can have on children requiring super urgent transplantation. Decisions regarding the clinical suitability of organs for transplantation, including the use of DCD livers, are made by clinicians and are based on the best available evidence. NHSBT has advised that, while DCD livers are an important source of organs when transplanted as whole livers, they are not routinely split, which is often required for paediatric cases. This is because splitting DCD livers is associated with a higher risk of graft failure and poorer outcomes for recipients. This guidance is kept under regular review, and NHSBT, together with the wider transplant community, continue to monitor emerging evidence and technological developments. When robust evidence demonstrates that changes in practice can be made safely and improve outcomes for patients, clinical guidance can and will be updated. Research into the Prevention and Treatment of Liver Failure

Alongside action to increase the supply of donated organs and maximise the use of those available, the Department also supports research into preventing and treating liver failure, including approaches that can stabilise patients while they await transplantation. This includes investment of over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR), which funds clinical, public health and social care research, works in partnership with the NHS, universities, local government, other research funders, patients and the public, and supports global health research. This investment supports the NIHR BioResource which includes a cohort of participants with Non-Alcoholic Fatty Liver Disease (NAFLD) who have consented to be recalled for research. Researchers can apply for access to participant’s data or recall participants from the NAFLD BioResource to support studies aimed at improving our understanding of liver disease or developing new treatments to improve patient care. Further information about NIHIR Awards for research in Liver Failure is available on the NIHR’s Funding and Awards website.

I recognise the profound impact Maisie Kate Almond’s death has had on her family and loved ones, and I am grateful to you for raising these concerns. The Department is continuing to work closely with NHSBT, NHS England and the transplant and A7

research communities to increase donor organ availability and maximise organ utilisation and support access to transplantation.

I hope this response is helpful. Thank you for bringing these concerns to my attention.