The European Researchers’ Night was an energetic festival of scientific exploration at the Natural History Museum (London) on the 27 September.
The Natural History Museum opened its doors after hours for a festival of scientific exploration called The European Researchers’ Night on 27th September. The tangled ‘world wild webs’ as went the theme of the night welcomed the public to interact with an eclectic mix of research and science from pop-up displays to one-on-one conversations over a pint in the ‘EU Pub’ and ‘Dialogue Den’. For the Research Project Management Office (RPM) at Imperial College London, it was the opportunity to bring four Horizon 2020 research projects EAVI2020, EDEN2020, PRESTIGE-AF and PERFORM2020 into the interconnectivity.
The delivery of these projects’ consortium, financial and communication management are coordinated by the RPM team and it was a no-brainer for the team to take these four projects, which are funded by the EU under the Horizon2020 program, and be part of the European Researchers’ Night. The projects’ scientists had a lot of fun showcasing their research in an interactive and engaging way and it was clear from public interest, the social impact that research fosters and is amplified through public outreach events such as this.
The European Researchers’ Night is another EU-funded initiative, and Dr Marta Archanco, a project manager of the RPM team, explains that regular engagement in public outreach events is not only a funders’ requirement but it serves as a conduit in which scientists can express why their research matters while furthering the projects’ social impact. For this particular event, Marta says “what many people may not realise is that this event occurs simultaneously across Europe for one night of the year. Last year, during the 2018 Night, in cities across Europe over 1.5 million people were connected with science. This is a beautiful thing and we are so proud to have our Horizon2020 projects apart of this public event.”
Loss of arm function is a very common problem after stroke. Put bluntly, if you have a stroke, it causes lasting damage to the part of your brain that controls movement in your arm. Stroke survivors may experience multiple upper limb symptoms resulting in complications such as weakness, planning and co-ordination problems, changes in the muscles (spasticity & flaccidity), subluxation, contracture, pain, swelling and a host of other symptoms and combinations of symptoms. The resulting presentation can render the upper limb virtually ‘non-functional’.
A well-known feature that can creep is called ‘learned non-use’, where the stroke survivor quickly gets very good at doing most reaching, grasping and releasing tasks with their less-affected, functional arm… ultimately him or her to forego efforts to improve the more-affected arm. Which is not good at all. Stroke survivors really want to know therefore whether intensive rehabilitation really does improve their upper limb motor control processes and reduce their impairments. And if it does, how should they go about getting this/doing it?
There is converging evidence that more therapy might result in better outcomes: current evidence suggests that intensive rehabilitation therapy helps people regain movement in their affected arm in the first few months after stroke. However, stroke survivors get to believe that little (if any) improvement can be made later on, which is sad, because we know this is not true.
Regaining lost movement may be possible many years after suffering a stroke, thanks to intensive rehabilitation therapy methods and inclusion of some principles, concepts and augments into rehab programmes, one of which is the use of robots. With the right therapy combinations, people can see improvements in movement, everyday function, and quality of life. Witness, for example, data which has emerged as a result of survivors attending the Queen Square (London) Upper Limb programme. See report in ACNR Journal. A majority improved in key clinical scores of motor impairment and arm function measured at admission and discharge and retain these improvements at 6-week and 6-month follow-up. Moreover, these are people improving months to years after their strokes occurred.
Is it the higher dosages of physical therapy/task-practice? Is it the combination of robotics and related augments alongside therapy/task-practice (therapy/task-practice aimed primarily at ramping up the dosage of repetitions on tasks)? For sure, as the RATULS Trial has emphasised, we need adequately powered dose-finding studies of promising interventions, tailored to targeted subgroups which also take into account potential cost-effectiveness to better understand the parameters involved.
Please read the full article here.
On October 4-6, 2019, the 5th National Congress with international participation of the Bulgarian Society of Neurosonology and Cerebral Hemodynamics was held in Sofia, Bulgaria.
An excellent scientific meeting organized by Acad. Prof. Ekaterina Titianova, provided the opportunity to hear the latest update in stroke treatment and application of Neurosonology, exchange ideas and establish platform for mutual collaboration. The added value was the charming exhibition of the art work of stroke survivors and patients with other brain impairments, highlighting the importance of the life after stroke domain. It was a great example of joined forces of professionals and survivors in the fight against stroke.
The congress was multidisciplinary and integrating the interests of different specialists – neurologists, neurosurgeons, angiologists, interventional specialists, etc. Over 180 delegates from Austria, Bulgaria, Israel, Italy, Republic of North Macedonia, Serbia and Spain, students in medicine, nursing, kinesitherapy, medical rehabilitation and ergotherapy from various medical universities, National Vasil Levski Sports Academy and universities in North Macedonia.
The forum was dedicated to the latest developments in ultrasound diagnostics of the nervous system with a focus on stroke, which continues to be the second cause of death in Bulgaria.
Within the international symposium Prof. Anita Arsovska from North Macedonia, who is also a SAFE Board member gave a presentation on “Optimal management of high risk asymptomatic carotid stenosis”.
“The patients and their families have difficulties in assessing the quality of care they are receiving. In addition, there often are communication difficulties, whether due to language or cultural differences and the family at home have no-one with whom they can consult on such issues. They have no criteria for assessing the quality of the treatment and in fact can be completely alone, particularly in the periphery, where choices are very limited” says Pnina Rosenzweig, President of the stroke support organisation in Israel, the Neeman Association.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention? PR: Given the projected increase in the number of stroke cases and the increase in the proportion of patients in need of rehabilitation, there is no doubt that inpatient rehabilitation solutions currently provided by the health care system will have difficulty responding to the huge shortage of rehabilitation beds in the hospitals, especially in the periphery. They will not be able to meet the expected burden of stroke and to provide optimal treatment to stroke survivors.
One of the solutions offered today in Israel and around the world is to provide rehabilitation in the patient’s home. This solution has many advantages. Among the benefits of providing rehabilitation in the patient’s natural environment are reducing the risk of being hit by dangerous infections and the huge costs on the public system.
On the other hand, the need to provide rehabilitative care to stroke survivor patients with complex needs calls into question the ability to respond to these needs. In the rehabilitation phase, these patients usually require many intensive medical and rehabilitative services and special teamwork.
SAFE: What would be the solution, i.e. what is your organization’s position regarding this issue? PR: The proposed solution is to establish a system of regulatory and objective controls to test the quality of the rehabilitative process and treatments provided in the patient’s home to people with stroke. The definition of such a monitoring system would include quality indicators of the stroke survivor’s rehabilitation and audit over time. The quality indicators will examine both the quality of medical rehabilitation and the patient and family experiences, particularly their perspective on the rehabilitation process.
The final audit data will be published for decision makers in the health care system, the families of patients after stroke and general public. This publication will motivate the health system to reward only systems that will provide quality rehabilitation and the families of patients to choose only these systems, which provide optimal rehabilitation to for their family’s member.
SAFE: Please tell us more about your organisation. PR: There are more than 120,000 stroke survivors in Israel and it is estimated that some 18,000 individuals join their ranks each year.
In 1996, families of stroke survivors banded together to create the Israeli NGO, the Neeman Association. Their mission was – and is – to reduce the morbidity of stroke in Israel, improve the medical and rehabilitative processes provided to the survivors of the stroke, to promote the health and well-being of stroke survivors and to support families.
Among the most significant breakthroughs of the Neeman Association in recent years has been its strategic plan to improve stroke prevention and care at the national level. The Neeman Association collaborates with Israel’s Ministry of Health, international specialists, decision makers and strategic leaders in medical care and rehabilitation.
In 2017, the Neeman Association was awarded first prize by the World Stroke Association for its advertising campaign to raise public awareness of stroke symptoms and the life-saving value of immediate emergency care.
Another key focus of the Neeman Association is to improve the quality of life for stroke survivors. Today, Neeman conducts fourteen social clubs in community centers throughout Israel, directed by professionals and operated largely by volunteers. For hundreds of stroke survivors and their families, the social clubs are a home and a haven.
To help create a buzz and to drive awareness of risks and prevention a number of stroke organisations around the world are quite literally flying the flag for our ‘Don’t Be The One’ campaign at their events to mark World Stroke Day. These events will be shared on social media as part of a virtual relay. SAFE and WSO are calling upon member organisations to register their plans for the Relay on the Global Map of Action on the World Stroke Campaign website, as well as any other plans they might have for World Stroke Day events and activities.
To help show that an event is part of a global campaign effort and the relay the WSO has produced some assets (attached under links below):
Don’t Be the One Flag – the flag has been designed with a space for local logos alongside WSO branding.
Don’t Be the One/ World Stroke Campaign wristbands – the WSO has designed these for printing on sustainable recycled PET plastic bands with a bamboo closure, but designs can be adapted if this cannot be produced locally.
On the day of your event, take high resolution photos of local participants with the campaign flag and share them with Sarah Belson from the World Stroke Organisation directly at Sarah.Belson@stroke.org.uk. If you have social media be sure to share photos from the event using the campaign hashtag #DontBeTheOne so that the WSO and SAFE can share content on their Twitter and Facebook channels.
In addition to supporting the World Stroke Campaign, SAFE would like to invite you to visit a website for stroke prevention (www.strokeprevention.info) now available in five additional European languages: French, Polish, Portuguese, Russian and Spanish. You can learn about 10 modifiable stroke risk factors and start taking actions today to reduce your own risk of stroke. You can support SAFE by spreading the news about this website and following us on social media, Facebook and Twitter. Show us your support by using the #StrokePrevention hashtag.
“Luxembourg needs an intensive aftercare centre where patients can go for three to six weeks in the mornings as well as in the evenings to receive an ongoing aftercare treatment for physiotherapy, speech therapy, occupational therapy in addition to psychological therapy. We also want families and friends to get the psychological support. Last but not least the patients need to be supported and assisted in being reintegrated back into the workplace” said Chantal Keller, the President of Blëtz Asbl, stroke support organisation from Luxembourg, a member of SAFE.
SAFE: What is the one issue related to the life after stroke in your country that you think needs special attention? CK: The single most important issue in Luxembourg is that there is no intensive aftercare centre for stroke victims.
The current structure for stroke victims aftercare which is in place is that there are four rehabilitation centres which are located in the city of Luxembourg, Dudelange, Wiltz and Steinfort. They offer aftercare treatment for a period ranging from six months up to a maximum of twelve months.
At the moment the only aftercare structure which is available after the rehabilitation centre is in the form of an out-patient treatment at the physiotherapist as well as the speech therapist. These out-patient treatments mean that the stroke patient is dependent on a member of the family to take them there as taxis are not reimbursed by the Caisse Nationale de Santé (CNS) – the Luxembourgish Health Service. In addition to this the cost of other necessary aftercare treatments such as occupational therapy or going to the psychologist are not covered.
SAFE: What would be the solution, i.e. what is your organization’s position regarding this issue? CK: Blëtz Asbl. Is actively working on setting up meetings and progressing with our goal which is to be able to offer an intensive aftercare stoke victims centre in Luxembourg. To date, we have the support and are under the high patronage of Her Royal Highness the Hereditary Grand Duchess.
We have also had meetings with the mayor of the commune of Bettembourg, Mr. Claude Zeimetz as well as with the mayor of the commune Mondorf-les-Bains, Mr. Steve Reckel in order to introduce and advance the urgent need for Luxembourg to have an intensive aftercare centre. In addition to this we are in the process of getting a meeting in place with the Finance Minister of Luxembourg, Mr. Pierre Gramegna. On the 30th of September we have a meeting with the Health Minister of Luxembourg, Dr. Jean-Claude Schmit.
Furthermore, we are currently in the process of getting stroke units certified in four hospitals, namely in the Centre Hospitalier Emile Mayrisch, Esch-sur-Alzette, Centre Hospitalier de Luxembourg, Hôpital Kirchberg which are both in Luxembourg city as well as the Centre Hospitalier du Nord, Ettelbruck.
Blëtz Asbl. Is actively promoting medical and scientific research. On the 27th of October, the World Action Day for Stroke Victims, we are pleased to be able to announce a conference with Dr. rer. Medic. Marcus Wagner, MPH, a senior expert from Stiftung Deutsche Schlaganfall-Hilfe. He was formerly the President from 2008 – 2013 of the Europäische Schlaganfallpatienten-Organisation Stroke Alliance for Europe (SAFE) and is the Vice President of this organization since 2016. At this conference we will be showing a film from the Stroke Alliance which will be adapted for Luxembourg as well as having the world première performance of a song written by Claudine Muno, accompanied by Remo Cavallini about aphasie which has been commissioned and composed for Blëtz Asbl.
SAFE: Please tell us more about your organization. CK: Blëtz Asbl was founded in 2013 by me, Chantal Keller, who was affected by a stroke, in addition to Marc Schommer, a stroke survivor and Claudia Heiderscheidt-Landa, whose husband suffered from a stroke.
Blëtz Asbl’s mission is to help and to offer support to stroke and aphasia patients, their families and friends. We wish to raise awareness and to offer information to patients with brain injuries as well as giving them support for their individual needs.
More about Blëtz Asbl
A book called “You have to be a fighter! Life after a stroke” has been published by Chantal Keller, President of Blëtz Asbl. And contains firsthand accounts of human beings who share their stories and show how much human potential there is for resistance and creativity in the face of adversity.
A stroke is a major traumatic event in the lives of those effected, their families and friends. Blëtz Asbl runs a helpline and offers support. Personal meetings can be arranged.
Blëtz Asbl also promotes medical and scientific research in this particular area.
And finally, every month Blëtz Asbl hosts an open day which covers different themes related to stroke and aphasia patients.
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The European Researchers’ Night is another EU-funded initiative, and Dr Marta Archanco, a project manager of the RPM team, explains that regular engagement in public outreach events is not only a funders’ requirement but it serves as a conduit in which scientists can express why their research matters while furthering the projects’ social impact. For this particular event, Marta says “what many people may not realise is that this event occurs simultaneously across Europe for one night of the year. Last year, during the 2018 Night, in cities across Europe over 1.5 million people were connected with science. This is a beautiful thing and we are so proud to have our Horizon2020 projects apart of this public event.”
An excellent scientific meeting organized by Acad. Prof. Ekaterina Titianova, provided the opportunity to hear the latest update in stroke treatment and application of Neurosonology, exchange ideas and establish platform for mutual collaboration. The added value was the charming exhibition of the art work of stroke survivors and patients with other brain impairments, highlighting the importance of the life after stroke domain. It was a great example of joined forces of professionals and survivors in the fight against stroke.
