Barts-MS rose-tinted-odometer: ★★★ Black and Gray Hurricane Friday, #000000 #d3d3d3
I was kindly invited by David Martin the CEO of the MS Trust to participate in a Parliamentary round table meeting on Multiple Sclerosis on Tuesday. The meeting was chaired by Helen Hayes MP, who impressed me immensely and reassured me that the Labour party has some serious talent and committed MPs on the backbenches.
The meeting highlighted the massive task ahead of us post-COVID in relation to MS services. COVID-19 has turned the perfect storm the MS community was facing before the pandemic into a category 5 hurricane. I am not sure if you are aware that during the pandemic there has been an approximately 30% reduction in patients with MS starting disease-modifying therapies (DMTs). Where are all these new patients? I suspect waiting to be referred into the service or stuck in diagnostic pathways.
In addition, to new patients waiting to be diagnosed there are patients with PPMS and SPMS waiting for MRI scans to assess if they have active progressive MS in the hope of starting ocrelizumab or siponimod. Add this to reduced MRI capacity, a reduction in neuro-rehab resources, a rising incidence of MS, an ageing workforce with many early retirements, BREXIT, reconfiguration of the NHS and rising expectations from a more informed MS patient population and you begin to realise the task at hand.
Having thought a lot about Tuesday’s meeting I think we need to get the MS Community together to reflect on what has happened over the last 18 months and formulate a plan for what the management of MS is going to look like after the pandemic.
COVID-19 has changed my MS practice for the better and for the worse. What can we learn from our experiences, what should we ditch, what should we improve on and what practices can we take forward into the future? I think we have an opportunity to radically change the MS service model.
If you have any experiences and/or ideas for diagnosing and managing MS in the future please share them with us.
I am asking my colleague Dr Wallace Brownlee, who has taken over from me as director of the MS Academy if he can host a meeting to discuss these issues and what our response should be in the wake of the pandemic. Why the MS Academy? It is an inclusive umbrella organisation that represents many different MS stakeholders, which makes it an ideal platform to bring the relevant people together.
Let’s think, let’s reflect, let’s meet face-2-face, let’s share our experiences and let’s formulate a plan together.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.
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.
We were rightly criticised last year for holding a meeting that highlighted the problem of variance in the provision of MS services, in the NHS. without a plan and vision about how to change things. I hope we have listened to you. The follow on meeting that we are hosting next month (8th-9th July) has a more ambitious agenda; it will even come with a 3-year action plan.
I have always made the argument that variance, when it comes to the provision of healthcare services, is a euphemism for inequality and that simply represents the haves and have-nots in society and the world. Why should someone with MS who lives in place B, or country Y, get a different service to someone with lives in place A or country X? On the other side of the coin, variability creates the engine for change; it is the catalyst for people to do something about the poor services they are providing or receiving; that is assuming they know about the quality of their service and are willing to do something about it.
My colleagues have told me that I shouldn’t beat myself up too much over the problems and criticisms of our first meeting; after all, it was very instructive in that it:
Brought us together as a wider MS community and allowed us to recognise and reflect on the challenges we face in addressing the variance in the NHS.
The meeting was inclusive in that there was no hierarchy in terms of the importance of the people who deliver MS services. We identified ourselves as equals, or partners, and included people with MS.
The meeting made us realise that we have cognitive biases that need to be addressed to make the community inclusive and more diverse. Diversity of ideas is going to be the catalyst for the next phase of our project.
We also realised that variance is not necessarily bad. We need some variance and ways to measure it so that the outliers at the upper end stimulate change. The next meeting is called ‘Raising the Bar’ and refers to improving services across the board.
The meeting also allowed us to get away from the NHS rat race and provided quality thinking time, i.e. time to reflect on the task at hand. This has allowed us to set priorities or specific work streams that will allow us to set key objectives for the programmes of work going forward.
As the chair of the committee, I have been asked to set out my vision for the initiative and define what success will look like for this initiative. To make it tangible I have defined targets at year 1, 2 and 3 and beyond.
YEAR 1
At the end of next year, I would expect all participating centres to actively engage in a national quality audit. This will include providing metrics on the NICE quality standards and several other new metrics that will allow us to assess how good or bad we are at achieving what we have set out to achieve.
My vision is 4×4, i.e. for 75% of patients with uncomplicated MS to be diagnosed within 4 weeks of the specialist MS team receiving a referral letter with a diagnosis of suggestive of MS and for 75% of pwMS, eligible for DMTs under the NHSE guidelines, to be have been offered, counselled and given a date for starting a DMT. Is this too much to expect? These time frames are compatible with our International Brain Health standards so why wouldn’t we aspire to meet them?
YEAR 2
At the end of year 2, all participating centres will have a patient partner programme in place to upskill pwMS on how to navigate their local MS services and how to self-monitor and self-manage their MS. This programme will be developed in partnership with patient organisations and will depend on local champions to make it happen. We are in an era in which knowledge has been democratised. Why shouldn’t people with MS participate in providing their own healthcare and contributing to their own healthcare?
YEAR 3
Participating centres will be working differently and managing MS holistically. This will include programmes to screen and manage comorbidities and to promote lifestyle interventions. Participating centres will collect data on these new activities as part of the annual national audit. As part of this holistic management of MS, there will be a ‘no patient left behind’ philosophy embedded in all MS services. This will require systems to make sure that all people with MS, who are covered by a particular service, will have access to that service. We don’t want vulnerable, less educated or less well off patients to be disadvantaged by the service.
LEADERSHIP
It was clear to us at last year’s meeting that for our vision to be realised we need a new generation of leaders to make things happen. We are therefore proposing putting in place a leadership training programme to equip people with the skills to make things happen. The leadership programme will be small and selective and will focus on doing, i.e. as part of the programme delegates will be expected to participate in and complete a national project. This will be run by Gabriele De Luca who is a shining example of what good leaders can do. Gabriele has experience from the AAN young leadership programme and is passionate about the field himself. It may be worthwhile coming to, and participating in, our meeting just to access the leadership training programme.
SHARING BEST PRACTICE
As always the wheel has usually been invented. Most ideas are not new, but how they have been tested and implemented may be new. We are proposing to use the Variance platform to share best practice. Why reinvent something if it already exists? We expect all centres to share their successes and failures so that others can learn from them. This will hopefully allow MS centres to share their materials and experiences with other centres so as to raise the bar for everyone and to create a collegiate atmosphere. The advantage the MS Academy has is that we already have the infrastructure to make sharing relatively easy.
So if you are reading this post and are attending this year’s meeting don’t be shy; please submit a poster to the meeting on something in your service that you are proud of, or even something you are not so proud of. We will select 3 or 4 posters for a platform presentation to allow wider discussion.
If you have not registered already please do so now there are a few remaining places.
