Your Speak, We Listen

Improving Sickle Cell Care Together

Listening to Patients

Patients told us they want to be listened to, believed, and treated as experts in their condition — especially during a crisis. This was a key message in the APPG report No One’s Listening. In response, we established a Patient and Public Voice (PPV) group for sickle cell, which now plays a central role in shaping our services. The group meets monthly to share feedback, highlight priorities, and guide how we use resources to improve care. We are proud that patients are not just consulted but are actively steering our work. If you’d like to get involved, contact our team.

Faster Pain Relief

We’ve helped Specialist Hospitals in region achieve NICE guidelines to deliver pain relief within 30 minutes of arrival. We share this data monthly with our PPV group and explain any factors that affect performance. We’ve also strengthened our data team to so that in the future we will not just track the first dose of pain relief, but the entire journey through a sickle cell crisis. This will help us improve care, hold services accountable, and ensure patients receive timely and effective treatment throughout their Hospital stay.

Improving Emergency Care

We closely monitor emergency care at our specialist hospitals to identify areas for improvement. This has led to better patient experiences and stronger emergency pathways across both specialist and local hospitals in our network. By sharing this data with patient leaders, we’re building a culture of transparency and continuous improvement. Patients are gaining a deeper understanding of the pressures on services and are empowered to share this knowledge within their own communities.

Training Healthcare Staff

We’ve appointed an Adult Nurse Educator to train Emergency Department and Haematology nurses in pain management, safe transfusion practices, and early intervention. This is especially important in hospitals that see fewer sickle cell patients, where staff may not be familiar with the urgency of a pain crisis. Our training also challenges harmful stereotypes, such as assumptions about “drug-seeking” behaviour, and promotes respectful, personalised care. We are working towards hosting our third annual education day to bring together professionals from across the region.

Specialist Education for Patients

Patients and families told us they want more information about how sickle cell affects the body beyond the well-known complications. In response, we’ve created a series of ‘deep dive’ videos exploring the impact of sickle cell on the kidneys, eyes, and teeth. These resources are designed to empower patients with knowledge and support informed conversations with their healthcare teams. You can find the videos on our YouTube channel.

Hyper Acute Units

We are delighted to have supported the development of two emergency department bypass pilot project services at St George’s and Hammersmith Hospitals. These specialist units allow adults in crisis to bypass A&E and be transferred directly to expert haematology teams, reducing delays and improving outcomes. From September 2025, patients usually managed at Northwick Park and Central Middlesex Hospitals can now also be admitted to Hammersmith Hospital for inpatient care.

We’re proud to announce that the bypass service at St George’s is now available 24 hours a day, 7 days a week.

Supporting Older Adults

Our PPV group identified a gap in support for older patients, noting that most services focus on younger people. In response, we co-designed a patient-led event called Milestones, held in August 2025, to explore the experience of aging with sickle cell. The event was a huge success, receiving overwhelmingly positive feedback. It created a space for older patients to reflect on their journey and connect with younger people who are earlier in their sickle cell experience. We are committed to continuing this work and improving support for older adults.


Community-Based Care

Advocacy groups called for more community-based services, and we listened. In 2024, we launched two community pilot projects in North and South West London. These services include specialist nurses, social workers, psychologists, and physiotherapists, all working to reduce unnecessary hospital admissions and support patients at home. Patients helped design key aspects of the pilot projects, including increased access to psychological support and holistic therapies such as massage. We are proud to offer care that is not only clinical but compassionate and community led.


Menopause Support

Patients told us there is a lack of support for those experiencing menopause alongside sickle cell. We responded by developing a dedicated Menopause Resource Pack, now available on our website. This pack provides information and guidance to help patients navigate this stage of life with confidence and clarity. We are committed to improving resources for all aspects of aging with a red blood cell disorder

Research and New Treatments

The APPG report called for greater investment in sickle cell research, and we are proud to be part of that change. The Imperial Sickle Cell Group has received funding from the Blood Fund for a co-designed study exploring the use of hydroxycarbamide. We’re also working with the National Institute for Health Research (NIHR), which will host a series of patient education events from October 2025 to April 2026. These events will share new studies and discoveries, helping patients stay informed and engaged in the future of sickle cell care.


Expanding Red Cell Exchange

We are delighted to be part of NHS England’s response to the APPG report, which includes funding to expand access to Red Cell Exchange. This has allowed us to work with multiple trusts to increase staffing and invest in specialist equipment. The management of the network and the patient and public voice group are actively monitoring how this funding is being used and its impact on patient care. Our goal is to ensure that more patients can benefit from this life-changing treatment, delivered safely and consistently across the region.