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Sickle cell treatment: fostering collaborative approaches

Written by: Harriet Smith - 26th September 2023

True change often arises from collaboration and collective effort. One remarkable example of this can be found when looking at how NHS England are attempting to improving access to treatment for patients with sickle cell disease, via the MedTech Funding Mandate.

Understanding the MedTech Funding Mandate

MedTech Funding Mandate (MTFM), introduced on April 1 2021, is an NHS England programme designed to accelerate the adoption of selected cost-saving medical technologies, diagnostics, and digital products approved by the National Institute for Health and Care Excellence (NICE). This initiative, facilitated by the Health Innovation Network, supports healthcare acute trusts in implementing these technologies more rapidly and effectively across various clinical areas.

As of 2022, the MTFM encompasses a diverse range of innovative solutions, one of which is the Spectra Optia machine produced by Terumo. This  technology plays a pivotal role in treating sickle cell disease patients by automating the process of red blood cell exchange. Sickle Cell sufferers can often be in and out of hospital experiencing severe pain and having regular ‘top up’ blood transfusions. Sickle cell disease affects all parts of the body with sickle cells not living as long as normal red blood cells resulting in anaemia.  With red blood cell exchange patients can see a big improvement, no longer needing top up transfusions; their pain is usually much improved and the likelihood of experiencing a crisis is reduced.

What our national collaboration is trying to do is utilise the policy to deliver effective care and treatment that is equitable to all patients who need it – no matter where, in England, they live. Can we reduce the use of manual blood exchange, which takes longer, uses more blood and leads to more iron build up in the body?  Can we provide the information that patients need to understand where and when this procedure is available, and can we try and improve the trust that these patients have in their local NHS services?

In a healthcare landscape where health inequalities persist, this programme demonstrates how truly collaborative work can instigate real change. Change needs 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.

It is exciting 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.

Effective collaboration in action

Central to the success of this Spectra Optia work is effective collaboration. Every two weeks I chair a meeting with stakeholders from NHS England, the MTFM policy group and NHS England Specialised Commissioning who help with the contracting and funding of these services, as well as NHS Blood and Transplant (NHSBT), who provide much of the blood management services in the NHS. My 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. They 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. Together, we sought to uncover patients’ preferences, willingness to travel for treatment, and the barriers hindering access to the care they deserve.

Population Health Decision Making

In a society where people are constantly on the move, the commissioning of NHS services must be flexible and responsive to population shifts. Monitoring population movement allows us to adapt our strategies to meet evolving healthcare and patient needs. We are also obliged to look at areas of deprivation, and those patients who the NHS are not reaching effectively – looking at sickle cell disease as an example, patients from the most socio-economically deprived areas and those suffering from other comorbidities are at highest risk of both readmissions and in-hospital mortality. Thus indicating that there are inequalities in healthcare access and health outcomes amongst people with sickle cell disease.  We have to consider where treatment is accessed, and whether people have the health and resources to travel for hours to receive their care.

Sickle Cell disease treatments are managed at a national level through ten regional Haemoglobinopathy Coordination Centres (HCCs). By leveraging prevalence data, NHS data, and sales data, we can pinpoint areas with the highest need for automated red cell exchange. This data-driven approach enables us to target resources effectively and ensures that patients receive the care they need, regardless of their location within England. We are currently working on, and approving, business cases from all ten of the HCCs in England, including the needs of hospitals reaching from Plymouth to Newcastle.

Tangible results

The true power of this collaboration lies in its potential to deliver tangible results. As more patients across various regions gain access to automated red cell exchange treatment, perhaps we can improve levels of trust in local healthcare services. Patients will realise that this treatment is not reserved only for emergencies but is routinely available to those who need it.

To help patients better understand when to seek support, we have worked with our partners to produce an avatar. Written by NHSBT, the avatar is hosted on the Sickle Cell Society website and sponsored by Terumo. Using an easy-to-understand narrative, the avatar explains what sickle cell is, how symptoms manifest, and what support patients can access.

A holistic approach

I hope that this collaborative approach to commissioning, which brings together all interested parties, including the patient and their needs and wants can continue, and we can strive for cost effective, population health driven solutions to healthcare services.

This approach is far more than just providing machines. It is about strengthening services where they are needed, providing the necessary staff, training, consumables, and support to those hospitals where their populations are changing, where sickle cell is becoming more prevalent, and where change and adaption is necessary – it is what the patients deserve.