Barts-MS rose-tinted-odometer: ★★
I am increasingly being asked about what is going to happen to MS research and clinical services post-COVID-19. The question is being asked as if I am some kind of futurist or prophet. I am not. My response is let’s focus on the here and now. The following on the issues that need to be addressed this year:
- Untreated or under-treated MS. There is has been a drop-off of about 30% of new-starts on DMTs. This means people with MS are waiting in queues to be diagnosed and offered treatment.
- Far too few people with PPMS and SPMS have been through the screening pathways for potential treatment with ocrelizumab or siponimod, respectively. Some MS centres have yet to start their progressive treatment pathways.
- Vaccine hesitancy: too many pwMS are refusing our offer for a COVID-19 vaccine. Why? What do we need to address vaccine hesitancy? The message #GetVaccinatedASAP is maybe too flippant and doesn’t take into account the complexity of the issues.
- Neuro rehab: so many of my patients have deteriorated because their rehab services are on hold. Does the NHS have the capacity to deal with the backlog?
- Mental health: so many of my patients have mental health issues as a result of lockdown. Who is managing this avalanche of depression and anxiety? What can we do about social isolation and loneliness?
- Symptomatic therapies: where do I begin? The biggest one is bladder and muscle botox services. So many of my patients are waiting for these services to restart; they are in a desperate state with bladder problems and spasticity. Wheelchair services? Orthotics? Falls prevention? Bone health? Continence services? Swallowing assessments? Dietary advice? Comorbidity screening and management? Etc. It is not that these services are not running, however, many are running at half capacity and need really need to be face-2-face to be done properly.
- Monitoring: so many patients are waiting for annual MRIs to assess treatment response? How many have EDA (evident disease activity) that is being missed? Cervical smears as part of cancer screening? Blood monitoring etc.?
- Social services: how many people with MS are waiting for housing assessments or adaptions? How are we going to address social determinants of health? Poverty? Inequality? Addiction? Alcohol consumption has soared during the pandemic; pwMS are not exempt.
The other elephant in the room is the manpower shortage. Many NHS workers are taking early retirement because of burn-out. Yes, many of us are simply tired, depressed and worn out. How are we going to do more, much more, with less staff? This is not unique to MS but applies to the NHS in general.
Clearly, there is MS research that needs addressing. Many trials were halted or even terminated early because of COVID-19. Can we resuscitate these studies? Who is going to cover the funding shortfall to cover the extension costs of these trials?
I am told that charities are down about 40% in their fundraising. Less fundraising less priming of research ideas, less innovation.
At least the pandemic has driven a rapid adoption and investment in new technologies, which is likely to increase productivity in the future. I see no reason why the productivity gains won’t have a positive impact on MS services and research output.
One of the advantages of the pandemic is that I have had quite a bit of time to reflect on things and will come out of the COVID-19 more focused. I have learnt to say no and will continue to say no to many things related to MS. My time left to make a difference to MS research is relatively short and I want to make a real difference, which is why my focus is going to be on EBV, the viral aetiology of MS and MS prevention.
Please don’t get blinkered about the impact of DMTs on COVID-19 and vaccines; these ‘micro issues’ are really tiny relative to the ‘macro issues’ highlighted above. We seem to be missing seeing the forest for the trees. Yes, the mountain looks big and impossible to scale, but unless we start climbing it today we will never reach its summit.
Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.