This month's blog is written by Sabeera Dar, a final year medical student at UCL and global health researcher. In this blog Sabeera discusses research in chronic pain in Hypermobile Ehlers-Danlos patients, and how Cellen's personalised solutions are a step forward for patients.
An estimated 28 million people in the UK suffer with chronic pain. Amongst this population are those with hypermobile EDS. This multi-system condition covers a plethora of symptoms such as joint hypermobility, joint pain, visceral and autonomic dysfunction, as well as significant psychosocial elements. Whilst the actual frequency of hEDS in the UK is unknown because it is relatively rare, hEDS remains underdiagnosed. A prolonged lack of coordinated healthcare and overstretched social care services further compounds the issue. This means patients are left to navigate complex social, financial, and psychological repercussions of chronic pain wholly unsupported.
Multiple referrals between medical specialities evolve into a protracted diagnostic process. Consequently, these patients present late, often with several complications, problems with mobility and importantly, having used opioids. This makes managing such a young patient cohort particularly challenging. Furthermore, a recent parliamentary debate in the U.K. highlighted that hEDS services are excluded from the highly specialised Rheumatology service commissioned by NHS England. Despite growing awareness of the topic, the experiences of those with chronic pain are still overlooked and undermined in the clinical environment. Continued reluctance to discuss the intangible risks patient safety for those who commence opioid use for analgesic purposes at an earlier age risk becoming tolerant and addicted.
To prevent further deconditioning, there needs to be a readily available and personalised pain management service. Information regarding specific physiotherapy and carefully selected exercises needs to be more widely and sooner disseminated in those with hEDS. This becomes even more urgent in the context of the COVID-19 pandemic, given the backlog of appointments and the postponements that have arisen. Ideally, such a service should be accessible without delay and cognizant of geographical barriers. Digital health technology has an emerging role to play in this necessity. Leva Clinic by Cellen is a fully integrated service offering online personally tailored pain management services. With a multidisciplinary team consisting of expert clinicians, clinical psychologists, physiotherapists and nurse consultants, patients can access customized care plans. This removes the need for travel, a complication that disproportionately affects people with limited mobility, and is superior in flexibility than a conventional in-person meeting.
In addition, Cellen is revolutionising the way Doctors prescribe for chronic pain. Cellen Therapeutics collaborates with experts in healthcare, business, and research to enhance knowledge around cannabinoid-based medicines. The MedCan Hub, originally crafted by NHS consultants, offers vital tools for clinical teams with the aim of increasing physician confidence in prescribing bespoke medications. By empowering both physicians and patients simultaneously, such innovations pave the way for more efficient healthcare responses to the difficult reality of chronic pain.
Dar S, Tidman V, Mehta P, et al. SAT0515 COMPLEX HYPERMOBILITY EHLERS-DANLOS SYNDROME (HEDS): MAPPING THE PATIENT’S JOURNEY OVER 40 MONTHS IN A TERTIARY REFERRAL CENTRE Annals of the Rheumatic Diseases 2020;79:1213-1214.