‘The perfect storm’: why we need to think and work differently, now

Professor Gavin Giovannoni, chair of the ‘Raising the Bar for MS’ steering group, opened the same-titled event in July this year by presenting a vivid picture of what he termed ‘the perfect storm’.


Delegates who had attended the opening event in November 2018, or have kept abreast of the national project online, were already aware of the evidence that ‘change must start with us’ and that we must ‘think differently’ to tackle MS service variance, but Gavin’s opener was nevertheless sobering.

  • There is an increasing incidence and prevalence for MS, especially in women, and there is evidence that MS is triggering premature aging mechanisms, bringing about other health challenges.
  • The current quality standards do not address the issues. There are emerging international quality standards such as Delphi, but we have yet to ‘sign up’ to these and need more relevant Quality Standards of our own.
  • Added to this is the growing challenge around disease-modifying therapies (DMTs). There is a massively increasing usage of DMTs across centres around the UK, and whilst uptake of these is highly positive, as is the increasing amount of pharmacovigilance associated with them to ensure appropriate safety and monitoring, these is a real and largely hidden cost associated with them, both in terms of staff time and resources.
  • There has been improvement in efficiency around DMT delivery - again, a positive thing - but this is occurring to the detriment of other services and roles as there has been no increase in staff numbers or time.
  • The recent treatment for primary progressive MS (Ocrelizumab) is a real positive for patients, but places even further demand on DMT-related workloads and resources whilst the secondary progressive therapy expected to be licensed in the next couple of months is expected to have a huge impact and could increase workload by an additional 30-40%!

This picture of services is unsustainable, causing high levels of stress and dissatisfaction amongst professionals and a feeling of poor service delivery and connectivity amongst patients. This national project, to ‘raise the bar’ for MS, seeks to change this with a vision –

‘to improve MS services for all people with MS and their families,


to make delivering these services for all involved a rich and rewarding experience.’

The challenge can seem insurmountable, but making a start could make a big difference down the line. Jerry Clough later spoke to the room about the danger of doing nothing for fear of not achieving anything, or the ‘catch 22’, as he termed it, of resigning ourselves to a problem because it seems insurmountable. He shared that

‘if you get busy and active doing something, you may not achieve what success looks like in your head, but you will get as close to the goal as it is possible to get.’

Gavin’s suggestion was that we aim to raise the bar, across the board, by 1%. ‘If we break down everything we can think of that goes into MS care and improve it by 1% we can make a huge difference to MS as a whole’ he explained. Urging delegates to think beyond services, Gavin listed wellness, lifestyle, access, quality, variety and social need as all being areas to improve on.

The key to meeting the challenge of MS is ‘to optimise our services so that everyone with MS gets the best care they can get, at the right time, and can protect their brains and spinal cords’ summarised Gavin. ‘Optimising brain health as far as possible and ensuring early access to treatments improves survival; early intervention is best for delivering outcomes’, he continued.

Suggesting that the MS community look to rheumatoid arthritis as a branch of medicine to emanate, Gavin ended by asking delegates to think about their patients getting old and what that will mean to their quality of life, their abilities and functionality, and to the increasing burden on health and social care as a whole.

‘We need to give people as much reserve as possible in their brains. We need to reduce delays and ensure people are getting their disease under control. We need to get and keep brains as healthy as possible for as long as possible.’

Jerry later encouraged attendees in taking this goal and making it the purpose for change, or the ‘why’ of our focus. ‘Believe it is possible, become active, and understand the drive – why are we doing this?’

Acknowledging that even with this clear purpose and the project’s vision, it could still feel an insurmountable goal, Jerry reminded attendees of what they personally can accomplish.

What is in our gift? To:

  • agree on best practice and standard pathways
  • know where we are and get the best data
  • recognise that trying will get us as close to the goal as possible
  • keep trying and value all progress
  • agree a level of ambition and work towards it
  • collaborate and help each other when times get hard.

This scene-setting from Gavin, and practical encouragement from Jerry, alongside the evidence presented at ‘the Way Forward’ event about the need to ‘radically change what we do’ and to embrace tools to do so, from data, audit and technology, to patient partnerships and changes in culture, set a resolve in those who attended the meeting.

‘Those of us in the room have the power we need to fundamentally improve the quality of MS care in the UK, reduce variation and offer consistent care at the level we want everywhere, in the next 3 years’. 85% of attendees began the conference by agreeing or strongly agreeing with this statement, and by the end of the event, they were armed with the tools and confidence to begin taking action.

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