8. SOCIOECONOMIC IMPACT
What is the socio-economic impact of DCM? What is the financial impact of living with DCM to the individual, their supporters and society as a whole? [1]
Myelopathy.org is working closely with the global community of people with lived experience of Degenerative Cervical Myelopathy (DCM), and those who care for them, to understand and mitigate the economic burden of this debilitating condition. Not only does the support arm of the charity provide strategies to help individuals, but also the research arm of the charity aims to develop metrics to determine the cost to individuals and to society. By modelling the economic impact of DCM, our goal is to raise it as a healthcare priority among policy-makers and monitor the effectiveness of interventions.
Time and again in our Support Group, we hear how DCM is a life-changing diagnosis. In this poignant video, Annie Wandycz shares her personal experience of how DCM affected her career by ending her practice as a respiratory therapist.
How Is Myelopathy.org and RECODE-DCM Working to Address this Priority?
In 2020, Myelopathy.org commissioned the first report estimating the societal cost of DCM. Conducted in the UK, this estimated a cost of £0.7 billion for England, accounting for treatment costs and costs associated with disability, unemployment and social support. This is probably a significant under-estimate, as it only accounts for current diagnosis.
The recognition of “cost” as a core outcome for clinical trials, alongside the proposal of DCM as a single index term through the AOSpine RECODE-DCM project, should help to ensure that this evidence can now improve.
However, more must be done, as the condition continues to be a life-changing diagnosis that can thrust people into poverty. The lack of awareness for DCM means disability benefits are difficult to access. Iwan Sadler and Shirley Widdop shared their personal experiences and advice for Myelopathy Matters.
Listen to Podcast Episode: Series 2 Ep 1 – Poverty & Myelopathy
In 2022, Myelopathy.org was awarded a grant from the UK National Lottery to develop resources to help people with DCM in the UK seek appropriate benefits. This will include a series of workshops and videos for claimants, and a template letter that professionals can use to support their claims.
Learn More about Research Priority 8 on the Myelopathy Matters Podcast
In 2020, AO Spine took over the Myelopathy Matters podcast to tackle the Top 10 Research Priorities for DCM. In Episode 8, Dr Benjamin Davies and Dr Michelle Starkey talk with former nurse Shirley Widdop who had to give up her profession due to DCM, neurosurgeons Dr Michael Fehlings and Dr Andreas Demetriades, and health economist Richard Phillips. We hear real life experiences, explore healthcare inequalities, define the cost-effectiveness of surgery, and outline the current limitations and future strategies for modelling the socio-economic burden of DCM using big data.
Listen to Podcast Episode: AO Spine Research Top 10 – No. 8 – Socio-Economic Impact