Degenerative cervical myelopathy (DCM) is a form of slow-motion and progressive spinal cord injury caused by spinal cord compression secondary to degenerative pathology. This includes disease processes such as cervical spondylosis, ossification of the posterior longitudinal ligament, ossification of the ligamentum flavum, and degenerative disc disease [1,2]. Globally, it is estimated to affect 2% of adults, although less than 10% are formally diagnosed at this time [3,4]. DCM can cause sensorimotor dysfunction in the upper or lower limbs, gait disturbance, bladder or bowel dysfunction, and pain [2,5-9]. Surgery is the mainstay of treatment for DCM and aims to decompress the spinal cord [2,10-12]. Whilst this typically stops further deterioration and may afford meaningful symptomatic improvement, recovery is generally incomplete. People with DCM experience high levels of disability and dependence, and are among those with the lowest quality of life scores for any chronic disease [13]. In fact, almost half of diagnosed individuals may be dependent on the support of others for activities of daily living (41.9% (326/778) in a recent study [14]).

This landscape, in the study mentioned above, results in great socioeconomic impact, with over a third of participants unable to return to work (35.7%; 278/778 of people with DCM [14]) due to DCM. Furthermore, 25.8% (201/778) were employed full time and 11.3%(88/778) were employed part-time [14]. In addition, 35.7% (278/778) were unable to work due to their disability [14]. Surgery can be helpful, with Lønne et al [15] showing that by 12 months after surgery, 65% (589/906) had returned to work, increasing to 75% (680/906) by 36 months. Clearly, therefore, DCM impairs patients’ ability to contribute economically before retirement and can lead people into poverty [16]. Davies et al [17] found that, based on the average age of cases at presentation in the United Kingdom and an average age of retirement of 65 years, there is a potentially 15.1 years of affected productivity in people with DCM [17]. This equates to an estimated lifetime inflated loss of income of up to £347,112 (US $435,150) using UK Office for National Statistics figures or £474,719 (US $595,121) using Office for Economic Co-Operation figures [17]. In fact, there is an estimated annual loss of productivity of £362.6m (US $453.3m), in addition to disability financial support totaling £280.2m (US $350.3m) and an overall cost to society for this cohort of £681.6m (US $ 853.9m) in the United Kingdom [17]. This has a cumulative negative financial effect due to the association of DCM with a low socioeconomic index, a delayed diagnosis, and poor outcomes [18].

Whilst this provides an estimate of the current “demand” and potential future “societal cost” of DCM, the practicalities of ensuring that people with DCM can access support is seldom straightforward, since social support systems differ by both jurisdiction and patient circumstance. A study from Norway, where financial support is available to all citizens suffering ill-health, found that 20% of patients received medical income compensation financial support 1 year before surgery, rising to 100% at the time of surgery. However, for most countries, this “gold standard” access is complex. First, the term “DCM” is relatively new, having been introduced in 2015 [1]. Furthermore, being focused on undergoing treatment and lacking a true understanding of the long-term implications of the disease, people with DCM rarely recognize (or accept) the need for financial support until needs are heightened [19-21]. Professionals may be aware of these challenges, as patients often turn to their medical team for support, guidance, and written opinions. However, many health care professionals are not trained to advise patients on available options and are likely unequipped to best navigate the claim and assessment process.

Myelopathy.org is the first global scientific and clinical charity for DCM. The charity provides an accessible internet-based platform freely disseminating information relevant to the DCM diagnosis and its treatment. As an organization, it hosts peer-to-peer support forums, and fields inquiries from those affected by DCM. Across this media, contacts requesting information or assistance for accessing financial support is a frequent topic.

Several active organizations exist that offer advice and guidance to people applying for financial support. These include Hastings Advice and Representation Centre (HARC) [22], Citizens Advice [23], and Welfare Benefits Unit [24]. In fact, certain charities such as the British Heart Foundation have dedicated web pages specific to applying for financial support [25]. Some, such as Age Scotland, offer workshops to their beneficiaries about accessing benefits [26]. However, there is no literature assessing the utility of these interventions. We hypothesized that delivering workshops centered around access to financial support could assist people with DCM.

A total of 24 people with DCM registered for the workshops. There were 9 attendees in UC and 7 in PIP, with 2 individuals dropping out from the first session to the second. Demographic information was not recorded.

With the support of a charitable partner, Myelopathy.org delivered a series of workshops that were effective in increasing awareness and confidence in obtaining financial support in the United Kingdom. No other similar study was found through a search on PubMed for comparison, even in a non-myelopathy context, thereby illustrating the novel nature of this initiative. Workshops were considered highly useful (9-10/10) and increased confidence by >40%.

Following inductive thematic analysis, themes regarding the usefulness of the sessions and the challenges to accessing financial support emerged. The interactivity of the session was viewed as an important positive. The usefulness of the sessions was also noted as well as the desire for further sessions. The challenges of applying for financial support were also explored, notably the confusing system, physical disability, the lack of knowledge about eligibility, lack of understanding and knowledge from professionals, and fear of judgment. One participant had negative feedback, which included the length of the session and perceived problems around confidentiality and data protection. The feedback was taken seriously and given to the facilitator. An apology was presented to the participant by ZK, the director of Myelopathy.org, and the misunderstanding was resolved. This participant did not attend PIP and could represent a subgroup of the people with DCM population for whom another mode of engagement would be more suitable such as anonymized access of online web pages or documents.

While the intervention was considered successful, it is important to consider areas for improvement, particularly to ensure the intervention can be sustained and exported to other regions or countries. Of note, participants were split about wanting further one-to-one sessions despite thinking further sessions would be helpful. This could be potentially explained by the participants preferring to be in a group setting rather than alone.

Experience from other settings is limited and is an avenue that should be explored. It should also be acknowledged that individuals who sign up for a group workshop may be more likely to like such settings. This initial evaluation also does not collect objective data relevant to actual or successful financial support applications. Other limitations include the fact that the sessions were focused solely on financial support available in England and particular economic situations. How these findings relate to outside England and situations such as self-employed status is therefore unclear. Furthermore, delivery of sessions virtually, available to only a limited number of participants, may provide only a narrow snapshot of people with DCM. This situation is compounded by the fact that Facebook-only recruitment may skew participant demographics. Another limitation is that no demographic data were collected that could have helped in contextualizing findings and identifying possible trends across specific demographic groups.

Despite the limitations outlined above, the participants largely deemed this initial pilot to be a welcome success. Given this success, Myelopathy.org aims to provide further similar sessions both in England and other countries. In addition, this can serve as a template for small charities focusing on relatively unknown conditions that cause a financial burden. The socioeconomic impact of DCM is a global research priority [30]. The chronic disability experienced by most, even if transiently during the drawn-out diagnostic process and aftermath from surgery, can dramatically alter household incomes and thrust people into poverty [16]. There is a cumulative negative effect due to the association of DCM with low socioeconomic conditions.