Please note that the content of this website is not intended for audiences within the USA or Canada. To proceed, kindly check the below box hereby confirming that you are not a resident of the USA or Canada.
Keep up to date with MS21
If you wish to stay up to date with all of the MS in the 21st century activities, please provide your email address and full name below to receive a copy of our quarterly newsletter!
You are now leaving MS in the 21st Century’s website for an independent external site. MS in the 21st Century does not support or maintain this site and cannot be held responsible for its content. Are you sure you want to leave?
Your details have been submitted to the site administrator.
What is MS in the 21st Century?
Find out about the initiative and our Steering Group members
Dates for your diary
Find out about events that MS in the 21st Century is involved in
Download our resources
Take a look at the tools and publications that MS21 has developed
Have your say!
Take our unmet needs survey here
The latest news from MS21
Two monologues do not make a dialogue – CMSC 2018
Watch the highlights here!
I recently attended the 32nd Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), as a patient repr...
Two monologues do not make a dialogue – CMSC 2018
Watch the highlights here!
I recently attended the 32nd Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), as a patient representative of MS in the 21st Century (MS21). This is a fantastic annual event where the MS community come together to share findings and learn the latest about diagnosing and treating MS, and to hear MS research updates.
The event is held annually, and this year took place in Nashville from 30 May to 2 June and more than 2,300 healthcare providers, researchers and people living with MS attended.
Together with Professor Sarah Morrow, we formed the panel for the workshop series Two Monologues Do Not Make a Monologue and presented one of our new communication tools, MyMS Priorities.
MyMS Priorities is a pre-appointment planner that can help patients to identify and record symptoms and prepare the right questions for the next appointment with their neurologist. Healthcare professionals benefit from this too as the ability to review patient information ahead of time can aid efficient and appropriate referrals where necessary.
During the conference, we held 6 workshops attended by 70 delegates in total who were mainly American MS nurses and neurologists. These were interactive sessions during which support was expressed for the need to improve communications between HCPs and their patients. There was very positive feedback on the MyMS Priorities tool with some HCPs stating that they would like to use similar documents in their clinics. They also seemed to enjoy the novel theatre-style format of the workshops, which is a new approach for MS21. It was wonderful to see so many HCPs engaged with the topic of patient communication. The audience feedback on the tools really confirmed the value of the groups work.
With the assistance of a mobility scooter, I was also able to attend some of the CMSC lectures. The highlight for me was one by Dr Mitzi Williams from the MS Center of Atlanta who referred positively to our manuscript ‘Unmet needs and burden of treatment in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group’ during her lecture. We developed this paper to address the different perspectives people with MS and their HCPs may have on MS and I am delighted that it is being recognised by the community.
We are at ECTRIMS!
Following on from a successful presence last year, we are pleased to announce that MS21 will be attending the 34th Congress of the European Committee for Treatment and Research In Multiple Sclerosis (ECTRIMS) in Berlin, Germany, 10–12 October 2018.
The group is delighted to have had two posters accepted (details below), one as an e-Poster and the other as a poster presentation, which will be presented by Dr Sven Schippling during poster Session 3 on 12 October from 12:15–14:15.
E-Poster: MS in the 21st Century mapping study identifying the global educational offerings for multiple sclerosis patients.
Poster Presentation: Comparing patient and healthcare professional perceptions on multiple sclerosis management and care – where do their priorities differ? Results from a qualitative survey.
Please stay tuned for further announcements about MS21 activities at this event.
Publication of MS21's first joint paper, January 2018
Publication of MS21's first joint paper, January 2018
Mult Scler Relat Disord. 2018 Jan;19:153-60.
Since 2016, our group has had a unique position as a joint patient and healthcare professional steering group. Having identfiied differences between the opinions of the two groups on the greatest unmet needs in MS care, this paper sets out to provide practical actions on how communication can be improved, and gaps in MS care can be addressed through collaborative patient and healthcare professional projects.
See the rest of our publications here
Prioritising effective communication
MyMS Priorities is a pre-appointment planner that MS in the 21st Century has developed to benefit both people with MS and healthcare professionals. Unlike MS diaries, this document focuses on making priorities for each appointment, which can be anything from treatment issues to how MS is affecting a patient's lifestyle. Most importantly, this communication aid ensures both voices (doctor and patient) are heard, and their priorities considered equally. It also helps patients to be actively involved in their care and can help the healthcare team to make efficient and appropriate referrals where necessary, due to the option of reviewing the patient's information ahead of time.
Feel free to download the file and try it for yourself, and view the video below to see the planner in action.
Committing to shared decision-making
MyMS Commitments is an agreement developed by MS in the 21st Century that outlines the ways in which patients and healthcare professionals can share the responsibility of disease management. It comprises a list of responsibilities for both the patients and doctors with regards to disease knowledge and learning, preparing for appointments, treatment management, and lifestyle.
It is designed to create mutual understanding between the parties, but also to encourage self-management in patients from diagnosis onwards.
We recommend this tool as an aid for use in consultations soon after diagnosis. Download the file here to try it for yourself, and see the video below for examples of use.
Take a moment to share your thoughts
MS in the 21st Century is driven by evidence and research. During 2016, the group held a number of joint HCP-patient workshops, and it quickly became apparent that there are significant disparities between the opinions of patients and healthcare professionals on what the most important unmet needs in MS care are. In order to validate our findings, and identify unmet needs in MS care that we could help to address, we have developed a survey which has collected data from over 350 international respondents.
Please take a few moments to take our survey here, and be a part of the data!
Meet our Steering Group!
World Brain Day 2018
This year, World Brain Day is commemorated on 22 July, and is adopting the theme of how the environment can impact brain health. Whilst the brain is a part of the body essential for the personal, professional and social development of people, it also fundamental in the many diseases. So, what role does the environment play in a neurological disorder such as Multiple Sclerosis (MS)?
Exposure to sunlight, vitamin D, salt intake and smoking are just some of the environmental factors that could impact the life of a person with MS.
Studies have shown that people with MS who smoke cigarettes are three times more likely to enter a secondary progressive phase than people with MS who don’t smoke cigarettes. An increase in body temperature, whether due to ambient heat such as being outdoors in the summer or exercise, or due to internal factors such as an infection, can also worsen MS symptoms. This phenomenon is called a pseudo-relapse or pseudo-exacerbation, as it can resemble a relapse but is not due to myelin or nerve damage. One symptom that tends to be of particular concern to people with MS is cognitive function, which can be affected during these environmentally triggered pseudo-relapses.
Interestingly, in my experience, cognitive deterioration is one of the symptoms of MS that is often least talked about, both in the consultation and in specific forums as it can often be difficult to talk about; however, this generates a growing demand from both patients and associations to know more about this symptom, as well as to have the tools to face it. This is the focus of the MyMS Commitments and MyMS Priorities tools developed by the MS in the 21st Century Steering Group.
MyMS Commitments is intended to outline the ways in which patients and healthcare professionals can share the responsibility of disease management, including providing reliable information sources. In addition, the group’s second tool, MyMS Priorities, helps patients to identify and present their highest priority concerns or questions. MyMS Priorities helps patients to find a way to organize the consultation with their specialist, order ideas and ensure doubts about their illness in general or any particular symptom are addressed.
By introducing tools such as these, we hope that we can induce a change in behaviours; we must continue work together, neurologists and patients, to increase knowledge of MS symptoms, to better understand the illness and how healthcare professionals can help us improve our day to day lives.
ECTRIMS 2017 - a patient's view
ECTRIMS (The European Committee for Treatment and Research in Multiple Sclerosis) is one of the most interesting congresses about MS I have ever visited.
The event is held annually, and this year, the world‘s largest congress about MS took place in Paris from 25th to 28th of October and more than 10,000 visitors from more than 99 countries attended. In addition to a big exhibition from the pharmaceutical industry and some patient organisations, every day was filled with poster sessions, symposia organised or sponsored by the pharmaceutical industry and scientific teaching courses.
There is a lot to learn about Multiple Sclerosis; talks were given about diet, sports, mental health and isolation, and economic problems of patients, but for me, it was most interesting to find out that 'problems of daily life' have become such a large focus. It seems to me that views have finally changed, and that many healthcare professionals now recognise that it is not only the treatment that affects a patient’s wellbeing - it is important to see the 'bigger picture'.
One of the most important issues in my mind, and a focus of the MS in the 21st Century steering group, is communication between doctors and patients. Time with neurologists is often limited, the language used can be scientific and difficult to understand, and not every patient is well prepared for their appointment.
The MS in the 21st Century group, chaired by Prof. Dr. Peter Rieckmann, is composed of a patient steering group and a healthcare professional steering group. At ECTRIMS, representatives from each group formed a panel for the workshop 'Two Monologues do not make a Dialogue' and presented the two new communication tools which have been created by the group.
[Stanca Potra (Romania) and I represented the patient group, and Prof. Dr. Peter Rieckmann (Germany) and Prof. Dawn Langdon (UK) represented the healthcare professional side. The workshop was attended by over 50 healthcare professionals, patient representatives and industry members.]
The first tool, 'MyMS Priorities', can help patients to keep an overview of their symptoms and to identify their most important questions for the next appointment with their neurologist. It also allows healthcare professionals to list their priorities for any consultation and can help with tracking changes over time. The workshop emphasised that understanding each other and effectively exchanging information is hugely important.
A second important question posed by the panel was, 'who is responsible for a patient’s care?' Is the doctor 100% responsible or must the responsibility be shared by patients and doctors?
'MyMS Commitments' helps patients to become more engaged in their healthcare and to take some of the responsibility for management of their MS.
From a patient perspective, my view is that tools like this are needed, but it is important that they are tailored for different countries' needs. I believe that discussion between patients and doctors has a positive impact on the life of the patient and the more informed both patient and doctor are of each others' needs, the better the patient’s care will be.