The Purpose

For many years, the nutritional needs of patients living with sickle cell disease has not been recognised and not given priority as part of the standard clinical and medical management. However, the findings of a recent research project conducted by SCNA’s founder Dr Claudine Matthews with sickle cell service users/carers and sickle cell service providers identified key knowledge and care gaps impacting the health and wellbeing outcomes of the sickle cell patient population.

These are reflected in the comments from sickle cell service user/carers (SU-C) and service providers (SP), from the recently published study:

SU-C (6): “nutrition for me I think plays a major part in staying well …I’ve never directly been asked about my nutrition and how I eat…I’ve kind of looked up myself”.

SU-C (6): “I think it boils down to availability of the information”.

SU-C (3): “… nutrition has been a massive part of my mental health”.

SP (1):  “I work in the community, it’s not very well managed to be honest… nobody really knows what I know, it was just what I’ve kind of researched myself”.

In addition to the knowledge gaps, the research project confirmed a lack of nutritional resources and information tailored to the unique nutritional needs of people living with sickle cell and the fact that the patients have to self -research, self -diagnose and self-manage their often-complex nutritional needs, risks and challenges.  

The Motivation

The motivation for developing ‘The Optimising Sickle Cell Nutrition Compendium’ is underpinned by the findings of the research project and identified nutrition knowledge and care gaps that sickle cell patients face on a day-to-day basis. For this reason, SCNA conducted a national project with sickle cell patients and cares to co-develop evidenced based nutritional resources and information, to address the key knowledge and information gaps affecting people living with SCD, that are tailored to their unique nutritional needs; the project was funded by NHSE. Using a participatory co-design approach to the project was successful in supporting the co- development of nutritional resources and information, thereby addressing the knowledge, resources and information gaps and improving patient health and wellbeing outcomes. 

Feedback from the project participants highlight the value of the project being a vehicle through which their voices could be heard and their nutritional needs identified and recognised as a problem that is important enough to be addressed.  The impact of the project resources is illustrated in the following participant comments.

These are reflected in the comments from sickle cell service user/carers (SU-C) and service providers (SP), from the recently published study:

(P) – ‘This is groundbreaking stuff’; ‘thank you,

(C) – ‘I didn’t know about pica, I’m so glad I was part of this project’,

(P) – ‘I really found the information very helpful’,

(P) – ‘we need to share this nationally’. 

These perspectives also reflect the value of the resources to address the knowledge and information gaps affecting the health and wellbeing outcomes of the sickle cell patient population, whilst also informing a wider audience. A total of eight leaflets and two infographics were developed as the main outputs of the study, targeting an audience that includes both patients, caregivers, providers, health planners and policy makers.