Live music and displays of artwork by people with multiple sclerosis (MS) highlighted the importance of upper limb function at the #ThinkHand awareness event on 22 February.
Over 100 people, including representatives from advocacy groups, industry and MS clinics, joined together in the Bankside Gallery in London to celebrate hand and upper limb function in people with MS.
The guest of honour, Michelle Mitchell, Chief Executive Officer of MS Society UK, emphasized the value of hand and upper limb function in maintaining independence – a top priority for people with MS.
Professor Gavin Giovannoni and Dr Klaus Schmierer, from Barts and The London School of Medicine and Dentistry, highlighted that people with advanced MS who have lost the ability to walk but retain their upper limb function are currently overlooked when it comes to treatment.
The #ThinkHand campaign objectives include:
Ultimately, this could lead to more treatment options for people with advanced MS. You can find out more about the #ThinkHand campaign on the Barts MS Research Blog and on Twitter at #ThinkHand.
The impact of early diagnosis, effective treatment and a brain-healthy lifestyle was highlighted throughout the 2016 Annual Conference of the European Multiple Sclerosis Platform (EMSP) in Oslo this week.
Speaking on the opening day of the conference, Professor Eva Havrdová (Charles University, Prague) made the case as to why time matters when treatment is started. “If we are losing time, we are losing brain.”
According to health economist Dr Gisela Kobelt (European Health Economics), the time to diagnosis is shorter than it was 10 years ago, but is still too long. “A delay of 3–4 years is too long to diagnosis. You need to preserve the brain reserve.”
The comments support key recommendations in the policy report Brain health: time matters in multiple sclerosis, launched in October 2015. Its core recommendation is that the goal of treating MS should be to preserve tissue in the central nervous system and maximize lifelong brain health by reducing disease activity.
The importance of early intervention in MS with the most appropriate agents was discussed more fully during a parallel session chaired by Norwegian neurologist Professor Øivind Torkildsen. Contributions from MSer George Pepper (Shift.ms), Professor Havrdová and EMSP’s Christoph Thalheim were also well received. Attendees at the session offered feedback on Brain health: a guide for people with multiple sclerosis, a short summary of the policy report written especially for people with MS.
The MS Society of Norway became the latest endorser of the policy report, bringing the total number of endorsers to date to 26. The MS Brain Health team is continuing to seek endorsement from local and regional groups, as well as identifying ‘brain health champions’ among healthcare professionals, advocates and people with MS.
“Treat MS properly at the start and we may be able to delay or prevent the secondary progressive phase.”
The outlook for people with multiple sclerosis (MS) looks likely to improve. That was the message from Professor Gavin Giovannoni as he addressed over 400 delegates at the MS Trust Conference in Windsor, UK. In his talk, ‘Looking to the future’, Professor Giovannoni summarized clinical trial results for products at different stages of development and presented the therapeutic strategy outlined in Brain health: time matters in multiple sclerosis.
Highlighting the importance of early diagnosis and treatment initiation, Professor Giovannoni proposed a future where we “stop people with MS becoming disabled in the first place”. He told fellow healthcare professionals: “treat MS properly at the start and we may be able to delay or prevent the secondary progressive phase”. Professor Giovannoni also emphasized the need for a clear treatment goal, regular monitoring of patients using MRI and timely switching of therapies when disease control is suboptimal to preserve brain health.
Delegates included MS specialist nurses, physiotherapists and researchers, and every delegate received a four-page summary of the policy recommendations. Professor Giovannoni urged the audience, and anyone who wants to improve the lives of people with MS, to pledge their support to protect brain health at www.msbrainhealth.org/pledge.
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A therapeutic strategy in multiple sclerosis (MS) involving proactive monitoring, shared decision-making and improved treatment access needs to be widely accepted – and urgently adopted.
This important message could reach up to 9000 specialists at ECTRIMS, the largest MS conference in the world, when it is presented by lead author Gavin Giovannoni this afternoon. His late-breaking poster summarizes the recommendations from a new report, Brain health: time matters in multiple sclerosis, which was launched on 6 October 2015 by Oxford Health Policy Forum as the centrepiece of the MS Brain Health initiative.
“Everything in the recommendations is driven by delays in the system of our management of multiple sclerosis,” stated Professor Giovannoni at the report launch. “What can we do to optimize or maximize the brain health of somebody who presents to healthcare professionals with MS?”
The poster concludes that the recommendations will enable healthcare professionals to strive towards the highest possible standards of care, but that major policy changes are needed for this to become a reality.
Time matters in multiple sclerosis – international consensus recommendations on diagnosis, management and access to treatment, will be available to download from the MS Brain Health initiative website after the start of the poster session at 13:30 GMT on Friday 9 October.
A new campaign, aimed at creating a better future for people with multiple sclerosis and their families, was launched on 6 October.
The MS Brain Health campaign is a call to action based on recommendations from a new multidisciplinary consensus report. Brain health: time matters in multiple sclerosis was unveiled at an international symposium on the eve of ECTRIMS, the largest specialist MS conference in the world.
Healthcare professionals and representatives from advocacy groups were among the symposium audience that heard lead author Professor Gavin Giovannoni and colleagues call for the adoption of a therapeutic strategy in MS that aims to maximize lifelong brain health.
“It’s our responsibility to make sure that someone living with multiple sclerosis gets to old age with a healthy brain, so they can withstand the ravages of ageing,” said Professor Giovannoni. “The treatment philosophy is as simple as that.”
The strategy includes early intervention, a clear treatment target, regular monitoring and improved access to disease-modifying therapies (DMTs).
The report has been welcomed by professional associations and advocacy groups, including the European Brain Council (EBC), the European Multiple Sclerosis Platform (EMSP) and the Multiple Sclerosis Society.
The campaign is urging people to pledge their commitment to spread awareness of multiple sclerosis – and the potential to help people with the disease through embracing the recommendations of the report.
The aim of treating multiple sclerosis (MS) should be to maximize lifelong brain health in order to minimize long-term disability.
This forward-looking therapeutic goal comes from an international consensus document published by Oxford Health Policy Forum for the MS Brain Health initiative. Brain health: time matters in multiple sclerosis saw its official launch this evening at a symposium in Barcelona on the eve of the largest MS conference in the world.
The symposium, Is the MS community ready to promote brain health?, was chaired by lead author Gavin Giovannoni, who introduced an international multidisciplinary panel drawn from the author group. Tim Vollmer presented the growing scientific basis for taking a brain health perspective on MS. He was followed by George Pepper who talked about shared decision-making from the patient perspective. Gisela Kobelt and Helmut Butzkueven rounded off the evening with a joint presentation on the importance of generating real-world data for economic evaluations.
Audience participation was encouraged via interactive multiple choice voting. The greatest reaction was provoked by the answer to a question posed by Tim Vollmer: on average, people with MS lose brain volume seven times more rapidly than healthy controls.
The reach of the symposium was extended via live-tweeting by audience members, enabling others across the globe to follow online. Those engaging in this way included Barts MS Blog, European MS Platform, MS News Today, Neurodegenerative Disease Management Journal, Shift.ms, UK MS Register, and staff members from the MS Society and MS Trust. Helmut Butzkueven’s observation from his own clinical practice that early cognitive change is a massive contributor to unemployment in MS created the largest stir among the event’s virtual audience.
Brain health: time matters in multiple sclerosis is available to download from the MS Brain Health initiative website.
The goal of treating multiple sclerosis (MS) should be to preserve tissue in the central nervous system and maximize lifelong brain health by reducing disease activity.
This is the principal theme of a new report from an international multidisciplinary author group. Brain health: time matters in multiple sclerosis will be launched at an interactive symposium meeting today, on the eve of the ECTRIMS congress.
The report calls for a sea change in the management of the disease. Examples from other areas of medicine show that positive outcomes can be achieved when treating to a specific target. The authors recommend a therapeutic strategy based on regular monitoring to support a treatment target that maximizes lifelong brain health, while fully involving people with MS in shared decision-making.
The symposium will discuss the evidence base for such an approach in MS, and the potential impact on health and economic outcomes.
The findings and consensus recommendations of our two heart failure policy reports will be more widely available to healthcare professionals following their publication in a peer-reviewed journal. Improving care for patients with acute heart failure1 and Heart failure: preventing disease and death worldwide2 have both been reproduced in their entirety as open-access articles by ESC Heart Failure. We hope that increasing awareness of heart failure among healthcare professionals in this way will ultimately drive improvements in prevention and care that will save lives.
1. Cowie MR, Anker SD, Cleland JGF, Felker GM, Filippatos G, Jaarsma T, Jourdain P, Knight E, Massie B, Ponikowski P, López-Sendón J. (2014), Improving care for patients with acute heart failure: before, during and after hospitalization, ESC Heart Failure, doi: 10.1002/ehf2.12021.
2. Ponikowski P, Anker SD, AlHabib KF, Cowie MR, Force TL, Hu S, Jaarsma T, Krum H, Rastogi V, Rohde LE, Samal UC, Shimokawa H, Siswanto BB, Sliwa K, Filippatos G. (2014), Heart failure: preventing disease and death worldwide, ESC Heart Failure 1: 4–25, doi: 10.1002/ehf2.12005.
Image courtesy of ESC Heart Failure, published by Wiley on behalf of The Heart Failure Association of the European Society of Cardiology.
Heart failure destroys and damages life – coordinated efforts are needed to make the disease a health priority in every country. This was the take-home message of a special meeting convened at the Heart Failure Association (HFA) summit in Rome on 25 October 2014 as part of the Global Heart Failure Awareness Programme. Ambassadors from heart failure societies and working groups in 12 European nations rallied around core messages from the recent White Paper, Heart failure: preventing disease and death worldwide, to prioritize follow-up actions in their home countries. “We are building a much bigger common approach all over the world,” explained Professor Petar Seferovic of the HFA as he opened the meeting, which had been organized by Oxford Health Policy Forum (OHPF). “We aim to deliver the core messages to heart failure experts ... media representatives and policy makers.”
“Ten core messages demand action – and five areas need policy change,” emphasized Graham Shelton of OHPF, as he summarized the findings of the White Paper. “We need to seize publicity opportunities throughout 2015 and beyond, and target local, regional and national stakeholders.” To make the most of such opportunities, a practical guide to working with journalists was provided by Lloyd Bracey of ArcMedia International in a highly interactive session. “One should aim not at being possible to understand, but at being impossible to misunderstand,” he summarized, citing Quintilian.
The next topic, effective local policy intervention in Europe, stimulated enthusiastic discussions on engaging with the European Commission and national policy makers, which were ably facilitated by Caroline Vrancken and Claudia Louati of Burson-Marsteller. During the final session of the meeting, Heather Lang of OHPF urged ambassadors to “get these life-giving messages out to the people who need to hear them,” as they identified country-level priorities and actions for the coming months and years. These local activities will be supported by a toolbox of resources customized for each country, explained Ruth Bentley of OHPF, rounding off the day. “We truly hope that together we can make a difference to heart failure across the globe.”
The Global Heart Failure Awareness Programme is supported by educational grants from Novartis Pharma AG and SERVIER.
Delaying hospital treatment by as little as 4–6 hours after symptoms of heart failure appear can increase the risk of death. Patients with severe symptoms are routinely assessed by emergency doctors; to raise awareness among this audience, illustrations from the policy report Improving care for patients with acute heart failure were used at the European Society for Emergency Medicine congress, held in Amsterdam, Netherlands in early October 2014. The materials were displayed in interactive educational panels at the Novartis Pharma AG booth, and downloads of the materials were also available to Congress delegates upon request. The same approach was used to reach cardiology specialists at the European Society of Cardiology’s Acute Cardiovascular Care congress, 18–20 October 2014, Geneva, Switzerland.
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