Sarah, Duchess of York and Their Royal Highnesses Princesses Beatrice and Eugenie meet young people with cancer at UCLH
25 April 2025
Publish date: 25 April 2025
Every five years, a national peer review process casts a supportive but critical eye over red cell services across the UK.
Designed to uphold the highest standards in patient care, this review brings together clinical colleagues from across the country to evaluate the effectiveness, equity, and innovation within Haemoglobinopathy Coordinating Centres (HCCs) and specialist teams. In the latest cycle, The Red Cell Network Haemoglobinopathy Coordinating Centre (TRCN HCC) came under the spotlight—and the findings offer a valuable mix of praise and challenge.
The review team—comprising experienced professionals from across the healthcare system—spent time examining the TRCN HCC’s services, pathways, and collaborations. Their visit uncovered an ambitious, patient-focused network making strides in research, education, and community engagement, while also highlighting structural pressures and inconsistencies in care delivery.
Innovation in research and training
One of the review’s standout findings was the impact of the Sickle Cell and Thalassaemia Alliance for Research (STAR) team. Funded by the National Institute for Health Research (NIHR), the STAR initiative unites research nurses across North Central London, dramatically increasing opportunities for patients to participate in clinical studies. Since launching in August 2023, the team has achieved an exceptional 74% consent rate among paediatric patients and secured additional funding to expand recruitment into the “Improving Black Health Outcomes” study.
The TRCN HCC also earned praise for its professional training efforts. Its “Sickle Cell Disorder Bitesize Lecture Series,” comprising seven modules accredited by the Royal College of Nursing, addresses a key recommendation from the All-Party Parliamentary Group report No One’s Listening. Now adopted nationally through the ACT NOW pilot, this training resource is also set to be available via the NHS England Learning Hub.
Community engagement and patient-centred care
TRCN HCC’s approach to patient education stood out as another area of excellence. The team has orchestrated highly inclusive events for children, young people, and families affected by sickle cell disorder and thalassaemia—hosted at venues like Tottenham Hotspur Stadium, with another planned at London Zoo. These gatherings offer valuable educational content, particularly around transitioning from paediatric to adult services.
In collaboration with the Sickle Cell Society, TRCN HCC has also helped fund a new advocacy worker post in the East of England, reinforcing its commitment to integrated, co-produced care models.
Key concerns and gaps in equity
Despite these strengths, the peer review raised several concerns around governance, access, and long-term sustainability. Chief among these was inconsistency in patient pathways across the Local Haemoglobinopathy Teams (LHTs). Geographic disparities in specialist outreach meant that some patients had to travel long distances for care—potentially reducing attendance and increasing inequality.
The absence of a formalised out-of-hours emergency advice system also raised alarm. Reviewers noted that although consultants currently offer informal out-of-hours support, this model is not sustainable and calls for structured, 24-hour coverage supported by commissioners and trusts.
Workforce pressures and engagement challenges
Leadership capacity emerged as another point of concern. Although leadership time for TRCN HCC’s clinical leads was temporarily doubled in mid-2024, plans to halve this allocation by year’s end—despite ongoing demands—worried reviewers. Of particular concern was the potential impact on services in lower-prevalence areas, especially across the Thalassaemia and Rare Inherited Anaemia (RIA) network.
Reviewer feedback also pointed to low engagement from some specialist and local haemoglobinopathy teams. Attendance at TRCN business meetings was inconsistent, and only 13 sickle cell cases were presented for MDT discussion over the year. Some staff cited a lack of protected time to participate, prompting a call for clearer communication and better resourcing.
Recommendations for strengthening the network
To help address these issues, reviewers suggested creating network-wide nursing forums to enhance peer collaboration and knowledge exchange. Expanding access to psychological services and developing clear guidance on the acute and chronic management of thalassaemia were also highlighted as priorities.
Operational support was another concern. With only 0.4 WTE data support available, the network’s ability to manage KPIs, annual reviews, and NIHR-related reporting was deemed insufficient.
A balanced verdict
The peer review found no immediate risks or serious concerns but offered a candid and constructive analysis of where improvements are needed. In doing so, it reaffirmed TRCN HCC’s strengths in research, education, and community-building—while urging action on workforce, governance, and equitable access.
As the NHS continues to evolve its approach to personalised, high-quality care, the lessons from this peer review offer a timely and valuable roadmap—not just for TRCN, but for red cell networks across the UK.
