Evaluation of financial support workshops for patients under state pension age suffering from DCM: A UK Pilot Study (Preprint)

Abstract

Degenerative cervical myelopathy (DCM), a form of slow-motion and progressive spinal cord injury caused by spinal cord compression secondary to degenerative pathology, leads to high levels of disability and dependence, and may reduce quality of life. Significant transient and long term change to earnings do occur and can thrust individuals into poverty. People with DCM (PwDCM) face many challenges accessing state financial assistance. This can have a cumulative negative financial effect due to the association between DCM and low socioeconomic index.

We aimed to assess if delivering workshops centred around access to financial support, could assist PwDCM, living in the United Kingdom.

A series of two virtual workshops was targeted at accessing financial support for English patients under the state pension age, with an anonymised survey delivered to participants after each session. The first session was on Universal Credit (UC) and the second on Disability Financial Support (DFS). Survey responses were analysed using descriptive statistics and free text answers underwent inductive thematic analysis.

The average rating on the utility of UC was 9.00/10, with the mean score of wanting further sessions being 8.67/10. Pre-session confidence levels were 5.11/10 rising to 8.00/10. 56% of participants requested one-to-one sessions (5/9). For DFS, the average session utility rating was 10/10, with the desire for further sessions rated as 8.71/10. Pre-session confidence levels were 4.43/10 rising to 9.57/10. A total of 43% of participants requested one-to-one sessions (3/7). Following inductive thematic analysis, themes regarding the delivery, occurrence and context emerged. One participant gave negative feedback which included the length of the session and perceived problems around confidentiality and data protection.

The pilot series was largely perceived as a success, with participants finding them useful and increasing their self-rated confidence in navigating the UK financial support system. Given the small sample size, it is hard to predict the success of future sessions but with the lessons learnt from the pilot, Myelopathy.org are keen to host future sessions and explore options to extend the intervention to other countries. Finally, given that the hurdles in accessing financial support extend beyond DCM, such workshops may be relevant to other organisations.