Collaborating to improve access and equity of care for sickle cell sufferers

Sickle cell disease (SCD) is a serious and lifelong health condition. People with SCD produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels.

This can result in suffers experiencing painful episodes, called sickle cell crises, as well as anaemia, which is when red blood cells cannot carry enough oxygen around the body. Sufferers also have a higher risk of contracting serious infections.

SCD disproportionately impacts people from West African and Afro-Caribbean communities. Patients also often live in the most socio-economically deprived areas, and are at higher risk of both re-admissions and in-hospital mortality, as well as requiring regular ‘top-up’ blood transfusions.

Unfortunately there are long standing inequalities reported by patients in accessing the right care.

I’m proud to say that through partnerships and collaboration, we are strengthening our efforts to help tackle the inequalities in healthcare access and health outcomes amongst people with SCD.

The Health Innovation Network is the lead delivery partner for NHS England’s MedTech Funding Mandate policy. As part of this role, we have been tasked with increasing access to Spectra Optia apheresis devices, one of the technologies supported through the programme. This technology plays a pivotal role in treating SCD patients by automating the process of red blood cell exchange.

Automating red blood cell exchanges can help reduce the necessity for top-up transfusions, effectively manage pain, and lower the risk of experiencing a crisis.

As a National Programme Lead, it is important to drive initiatives that increase the adoption of this medical technology.

Through close collaboration with key stakeholders, including NHS England, the MedTech Funding Mandate team, NHS Commissioning Specialised Services, NHS Blood and Transplant, Terumo, which manufactures the Spectra Optia apheresis device, and the Sickle Cell Society, we aim to expand automated red blood cell services for sickle cell patients where they are most needed within the NHS and reduce health inequalities.

As populations change and move it is important that the commissioning of such specialised services utilises population health data to help predict and manage the requirements of their communities.

True change often arises from collaboration and collective effort, and it soon became apparent that to ensure the successful spread and adoption of Spectra Optia, we had to pull together a range of influential national stakeholders.

In a healthcare landscape where health inequalities persist, this programme has been able to demonstrate how truly collaborative work can instigate real change, and change needed to happen.

The ‘No One’s Listening’ report was published in November 2021 following an inquiry into avoidable deaths and failures of care for sickle cell patients. An All-Party Parliamentary Group (APPG) inquiry report highlights shocking failures as cross-party MPs call for major changes into care for sickle cell patients.

Collaboration is exciting, and it’s really empowering to be part of a team of passionate individuals from across a wide range of organisations with a shared goal, and a drive to achieve it.

Every two weeks the National Working Group meets, with stakeholders from NHS England, the MTFM policy group and NHS Specialised Commissioning, which helps with the contracting and funding of these services, as well as NHS Blood and Transplant, which provides much of the blood management services in the NHS.

Colleagues within the Health Innovation Network play a huge part, they are the honest brokers facilitating regional discussions, bringing together all the relevant doctors, management, suppliers, and other relevant stakeholders to uncover sensible, cost-effective local solutions.

The Sickle Cell Society, a crucial player in this programme, offers invaluable insights from the perspective of patients. It played a pivotal role in conducting a national patient and public involvement survey and webinar, allowing us to listen to the voices of those with lived experience.

This resulted in the publication of the ‘Appropriateness in access to automated red cell exchange’ report.

One of the biggest achievements to date with this work has been securing £1.5 million of capital funding from NHS Specialised Commissioning to allow NHS trusts to purchase 25 Spectra Optia Apheresis System devices.

This investment will ensure children, young people, and adults across England suffering from sickle cell disease will soon benefit from better care closer to where they live.

Nothing highlights the success of our collaborative efforts to improve access and equity of care for sickle cell sufferers better than the experience of the patient. Watch this video to see how the programme is helping to improve care for patients living with this condition.

Harriet Smith is the Health Innovation Network’s Medtech Funding Mandate (MTFM) National Lead for Spectra Optia. In this blog, she outlines the collaborative efforts to improve the support available to people with sickle cell disease, and tackle long standing inequalities.