This is a guest post from Claudine Matthews. Claudine is an innovative and forward thinking social care liaison officer with a comprehensive background in Dietetics with a special interest in sickle cell and thalassemia disorders. You can read Claudine’s full article in Dietetics Today here.
Who would have known that my ‘chance’ meeting with Sickle Cell Disease (SCD) would culminate in so many opportunities to change the course of my professional career?
As a Dietitian, my knowledge of SCD was non-existent; I was a blank canvas and my appointment as the social liaison officer, a service innovation to improve the social care outcomes for the sickle cell and thalassemia patients in my Trust, proved to be the catalyst for change.
My enquiry into the condition with its fascinating patho-physiology and intriguing epidemiology clarified my understanding of the condition and reinforced by my knowledge of the intertwining relationship which exists between the wider determinants of health–and its often paralysing effect on the self-efficacy of the patient and their family, poor housing, poor personal welfare and childcare for mothers with sickle cell, being major contributors.
But what about nutrition? Is there a role for Dietitians to step up and take responsibility using their expert knowledge of food and the science of nutrition and physiology to positively impact the health outcomes of this patient population?
My numerous observations identified a paucity of information on this topic, substantiated by the absence of any mention what so ever of SCD or even haemoglobinopathy in our Dietitians handbook, Manual of Nutrition and Dietetics. Something had to change!
As this field requires a wide range of collaborative working ranging from Dietitians, Haematologists, government policymakers and influences and the patients themselves; being a Dietitian, starting the enquiry with the Dietitians seemed the most logical approach.
Lack of knowledge provided the driving force for this first-line strategy aimed at raising awareness and fuelling the knowledge base of sickle cell amongst Dietitians, this led to me penning my article titled; Sickle Cell Disease: on the rise but under-recognised, challenging Dietitians to consider SCD as a long term condition, which it rightfully is and reflecting on the role the could/should play in improving the nutritional management of the SCD patient population.
Thankfully the article was accepted for publication in the December issue of the Dietitians professional magazine (Dietetics Today); the article made the front cover and was the feature article of the edition. This proved to be a ‘giant step’ forward for SCD in increasing awareness of the condition and possibly dialogue for change and improvement to its role alongside the clinical management of the condition.
Two recent review articles by American researchers Hyacinth et al (2010 and 2013) identified under-nutrition as a critical feature for SCD and conclude that taking a nutritional approach with SCD has the possibility of increasing patient outcomes, improved Quality of Life (QOL) and future prospects. This is the challenge I’ve accepted and with support and more research hope to influence policy and change makers to increase the ‘recognition’ of nutritional intervention as being a viable treatment option for all SCD patients.
Every long journey starts with the first step and I believe my article to the Dietitians is just that and over time would feature in all policies and standards of care related to the comprehensive management of the condition aiming to improve the health and wellbeing, self-management and independence of the clients.
The article concludes that SCD is a long term condition and challenges Dietitians to reflect on and consider the role they could play in improving the nutritional management of this patient group. SCD deserves a fresh review among Dietitians. The recognition of under-nutrition as a critical feature of SCD calls for the support and expertise of a qualified Dietitian. Dietitians are well placed to make valuable contributions to research and patient outcomes and Dieticians in both acute and community settings are hereby challenged to take a fresh look at SCD as a long term condition.