Jul 26, 2019
“The life of stroke victims is made difficult in several aspects. It is not only the physical handicap, but also a state of desolation. Family members can act against these troubles with good vigor and vitality, nevertheless a support of the surrounding society would be much helpful.” says Prof. Pavel Kalvach from Czech stroke support organisation Sdružení pro rehabilitaci osob po CMP (Czech Association for stroke victims).
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
PK: This is a point, which we should stress in our Czech community: more clubs for stroke victims, for stroke carers, more encouragement in terms of mutual communications, music, creative activities. The people affected by stroke can produce these activities partly on their own, but they need necessarily organizational as well as logistic support. Given such meetings would be established, we could believe, that they could then run already spontaneously. Certainly much enthusiasm is needed to put these intentions into reality.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
PK: The Czech Association for rehabilitation of stroke victims provides counselling, provides courses, activates clubs throughout the country, but its reach is by far insufficient. Many healthy, retired people, who could actively contribute to the care of those less happy in their physical health state, ignore the needs of stroke individuals and thereby also their eventual personal pleasure of making good deeds. Our organization should be more proactive in sharing knowledge and encouraging people in those activities. Self-supporting groups could be conceived and we should reach out to put them in life.
SAFE: Please tell us more about your organisation.
PK: The activity that the Czech Association for stroke victims takes the most merit for is the arrangement of summer camps, aiming at rehabilitation. These courses occur in recreational regions of Czech republic. Care of physiotherapists, of medical doctors, psychologists and logotherapists is provided for groups of approximately 40 persons. These courses are financially supported by our Ministry of health, who would cover ½ of the expenses. The other ½ is covered by each person himself. Besides of the medical and psychological individual and group training also cultural activities are organized, like visits to the sightseeing around, or collective singing, or even dancing. People take great pleasure in such course, but the number of those, who achieve to participate is still too low: About 200 per year. If we compare this with the prevalence of stroke victims in Czech Republic, this number make less then 5% of people, who could profit.
Jul 22, 2019
Today, on this year’s World Brain Day, SAFE is very proud to share the information of one of our stroke support organisations receiving a project grant from EFNA. The Stroke Association Serbia (“Moždani udar”) is awarded a grant for their #BrainLifeGoals campaign which includes young stroke survivors from Serbia.
Disclaimer: The information below was first published on EFNA website.
The #BrainLifeGoals campaign is an initiative of the European Federation of Neurological Associations [EFNA] that aims to raise awareness of the impact of neurological disorders.
In support of this campaign, EFNA will award grants, of €2,500 each, to projects that best reflect the theme of the campaign, raise awareness and improve understanding of neurological disorder. 28 applications were received from 13 different countries and a wide range of disease areas. The original intention was to award a grant to five projects, but we are pleased to announce that due to the high-level of interest and quality of applications, eight projects have been selected!
The chosen projects are:
‘Brain Conditions Cartoon Novel’ – Association of Patients with Neurodegenerative Conditions (APAN), Romania
‘Raising Awareness of Restless Legs Syndrome’ – European Alliance for Restless Leg Syndrome (EARLS), The Netherlands
‘Empowering People with Neurological Conditions to Realise their #BrainLifeGoals’ – Neurological Alliance of Ireland (NAI)
‘Cavernoma Society Raspberry Day’ – Cavernoma Society UK
‘Stroke Survivors’ #BrainLifeGoals’ – ‘Moždani udar’ – Stroke Association Serbia
‘Aspirations of Hope’ – European ME Alliance, Belgium
‘Stand Up Chemistry for children with learning difficulties’ – Pan-Hellenic Association of individuals with Attention Deficit/Hyperkinetic Disorder (ADHD Hellas), Greece
‘Step Up for Parkinson’s Performance’ – Step Up for Parkinson’s, Malta
For more information, please read the full article here.
Jul 20, 2019
Written by Dr Gabriele Wagner, Project Manager, SVDs@target
The annual General Assembly Meetings are traditionally rotating between the partners within the consortium. For this year’s GA meeting we chose the wonderful city of Paris, where Prof. Anne Joutel at INSERM is based. At the first evening we had a very nice get-together with the SVDs@target participants, who already arrived in Paris and researchers of the Leducq Foundation network, who also work on cerebral small vessel diseases.
On the next day we started in the morning with our working program and every Work Package had the chance to present their current work, results and status. The preclinical partners presented their results of the last months followed by lively discussions about the new gained insights and usually finished with a long list of new experiments, that were elaborated during the discussions. The clinical partners presented the current status of the clinical studies and trial and could present first preliminary data from analyses already performed.
One highlight was definitely the good and motivating news, that recruitment of INVESTIGATE-SVDs is about to be completed within the next weeks. After this fully packed day we let it end in a very cosy Parisienne restaurant, where the participants exchanged also beyond science – as the consortium maintains close collaborations, the participants really got to know each other over the last four years.
The second day started with a very helpful discussion regarding our clinical trial TREAT-SVDs and around noon, Prof Dichgans, Coordinator of SVDs@target thanked again all consortium members for the great work and with an additional thank to Anne Joutel’s hospitality he closed the annual meeting. After a relaxing lunch at the terrace of our meeting venue, the participants made their way back home.
About SVDs@target
Stroke and dementia rank among the most pressing health issues in Europe. Cerebral small vessel diseases (SVDs) have emerged as a central link between these two major co-morbidities. SVDs account for more than 30% of strokes and at least 40% of dementia cases. They encounter multiple distinct diseases that can be separated based on their underlying genetic defects, risk factors, and clinical presentations. Despite this profound impact on human health, there are no treatments with proven efficacy against SVDs.
The new network “Small vessel diseases in a mechanistic perspective: Targets for Intervention in Stroke and Dementia(SVDs@target)” is funded through the European Union’s Horizon 2020 research and innovation programme and brings together top scientists with a wide range of complementary expertise.
The project also includes 3 studies with stroke patients. They are:
ZOOM@SVDs, a high-resolution imaging study to look at vascular function and brain damage
INVESTIGATE-SVDs, an imaging study to assess the blood/brain barrier and vascular function,
TREAT-SVDs, testing the effects of different blood pressure lowering agents on vascular function in patients with distinct SVDs
With the better understanding of small vessel diseases SVDs@target will develop novel therapeutic treatments and finally contribute to the prevention of stroke and dementia.
SVDs@target has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 666881.
Jul 19, 2019
“In Hungary even nowadays people are ashamed of this disease (stroke), they do not talk about it, they live their life withdrawn, stopping all social activities, and therefore the beneficial rehabilitation opportunities often cannot be brought to their attention. In many cases, the society and the relatives give up on the stroke survivors” says András Folyovich, MD PhD – Board member of the National Stroke Prevention and Rehabilitation League – Hungary.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
András Folyovich, MD PhD – Board member of the National Stroke Prevention and Rehabilitation League
AF: Among the serious consequences of stroke, social reintegration is one of the most important issues, which needs special attention. Stroke survivors recovering with residual symptoms experience that their roles in the society are significantly affected: they can no longer fulfill their former work, and everyday tasks. They may even be forced to resign and thus the economic situation of the families becomes insecure. Significant number of stroke-patients need constant care, and the families face big financial burden. Moreover, family members often must quit their jobs too due to patient care. This emotional and financial burden is very difficult to live with for the affected families.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AF: In our opinion, civil organisations can help a lot in the successful reintegration into the community.
The majority of stroke survivors are discharged into the community. However, after the hospital discharge stroke-survivors and their caregivers are not fully aware of the available further rehabilitation options (physiotherapy, speech and language therapy, stroke support organisations etc.). The situation is worse for those, who are living in the countryside, as there are limited rehabilitation opportunities.
Stroke support organisations can help to give the useful information about the existing support groups, rehabilitation facilities and various equipment. Providing orthotics and transfer- and mobility equipment may assist for patients to be able to leave their homes and to start to fulfill the roles, they used to do before.
Support groups can also be helpful to give a platform, where stroke-survivors can meet and share their experiences and support each other.
In summary, our vision is a world, in which the number of stroke cases decreases significantly and all stroke patients receive a personalized, short and long-term support and care, with successful social reintegration.
SAFE: Please tell us more about your organisation.
AF: Our non-profit civil organisation was founded in 1993 and named ’The National Stroke Prevention and Rehabilitation League’ in 2011. Our mission is the prevention and the rehabilitation of stroke patients through services, personal assistance, information, advocacy and cooperation with health professionals.
Our core activities include:
- organising free health screening events (Stroke screening day at Szent János Hospital)
- editing and issuing healthcare brochures and their distribution (e.g.: physiotherapy exercise booklets to those who live in the countryside)
- providing access to transfer and mobility equipment
- personal assistance and advocacy to stroke-patients and their relatives
- participation in national and local health related events
- recruiting new members
The League’s services and programmes are available for everyone. In order to make our work more effective we also co-operate with other national and foreign organisations and governmental decision-makers (e.g.: Aphasia Club, International, Pető Institute, SZÍV SN Association for heart diseases etc.)
The National Stroke Prevention and Rehabilitation League is currently unable to fulfil their tasks appropriately, due to the lack of funding. The League cannot count on direct financial support either from the government, or from pharmaceutical- and other medical companies.
The reason for this is that traditionally the Hungarian Stroke Association (the medical-professional company) organises the stroke-days and the public awareness events, which means that the financial support arrives there.
The solution may be the revaluation of the National Stroke Prevention and Rehabilitation League and the Hungarian Stroke Association. For which, there is a good chance with the current leadership. In close co-operation, it is necessary to redistribute the tasks. The League should deal with the public issues, while the medical-professional company should be responsible for the professional background. It would be beneficial to contact with the neurological departments of Hungary, and to organise the civil organisations around these departments.
Jul 12, 2019
Continuing our conversations with SAFE member organisations from across Europe, we spoke this week with Pinelopi Vlotinou, Occupational Therapist and Anna Tsiakiri, Psychologist from the Greek stroke support organisation, Hellenic Alliance for Stroke.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
Pinelopi Vlotinou, Occupational Therapist
Engaging and making relevant transitions from clinic to real life in the outside world that are meaningful and thoughtful. Often the missing link of the “rehab puzzle” means announcing to the family prognosis for improvements which may not always be positive and may require environmental adaptations that should be individually geared and best suited for the patient. After a stroke there are “fog” issues not only for the patient but for the family. Trust issues about what works best as well as a unfamiliar new home, social as well as professional environment. It is important that regaining social roles and the return to the previous state of life, taking into account the consequences of stroke. Life goals as well as family needs should be balanced. They require that the patient should establish good relations with someone they trust and implement changes and transitions into daily decisions. Support and framing by a group of specific health professionals who will direct towards the optimum course of action.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
Solution: The awareness of the fact that rehabilitation is long term but must be individualized. Therefore the families make cultural competent adaptations that are considered in their options which are provided by health care staff as well as society at large after the hospitalization.
Proposals:
– Every stroke unit should define a “Stroke advisor”. His/her role summarizes at the following:
– connect the patient and his family with “health professional system”
– provide support, information and guidance
– keep a six month “follow up” with the patient
– provide “monitoring” of the patient even at home. Adaptations, ergonomic and ecological suggestions, modifications even to the working environment of the patient can be an additional action to help the individual
– provide resources about Stroke Support Organizations and about local available services
– provide access to patient and family to informational leaflets such as Angels Initiative.
– All neurological clinics/stroke units should establish a Common Protocol about patient management
SAFE: Please tell us more about your organisation.
Anna Tsiakiri, Psychologist
Hellenic Alliance for Stroke consists of research and academic organizations of health care providers such as the Greek Neurological Society and the Hellenic Society of Cerebrovascular diseases, institutions, health professionals, voluntary support structures, caregivers and patients. The aim is to make a concerted effort both to inform and educate the public about prevention, early diagnosis and treatment of a stroke and to the health policy makers in order to achieve improvement of health services for the treatment, care and rehabilitation of the patient with stroke at the national level. Main goals:
– Communication and cooperation between members, coming from the scientific field and members, coming from the field of stroke survivors, in order to update and exchange views, knowledge and experience which we believe is the best possible ways to treat, restore and help improve or maintain quality of life not only for the stroke survivor but the family at large.
– The support and promotion of scientific research on issues related to strokes, aiming at better prevention, rehabilitation and reduction of consequences and social costs.
Jul 5, 2019
“The life after stroke is the poorest point of the care process, especially in the chronic phase” says Esther Duarte, member of the board of Fundació Ictus, and rehabilitation doctor at IMIM Institut Hospital del Mar d’Investigacions Mèdiques in Catalonia, Spain.
SAFE: What is one issue related to the life after stroke in your country or region that you think needs special attention?
Esther Duarte
ED: In Catalonia, stroke patient associations have few members, therefore they have little power in society and official institutions, as well. In consequence, more public resources are always allocated to young patients with other illnesses, such as cancer and ischemic cardiovascular pathology. Moreover, these associations are only useful for a small percentage of patients. One of the aspects that are not taken into account is labor protection. Few patients return to work because there are no policies to facilitate it. Furthermore, other aspects with bad attention are those related to sexuality or driving, for example. On the other hand, there are few research groups focused on life after stroke and how improve patient-centered outcomes. In conclusion, access to rehabilitation services is not guaranteed in all cases and the needs of patients and caregivers are not always met.
SAFE: What would be the solution, i.e. what is your organization’s position regarding this issue?
ED: The main goal of Fundació Ictus is to improve the quality of life of stroke survivors and their caregivers. We collaborate with patient associations to meet their needs and help them in finding resources for their activities. We also help stroke survivors with specific training for caregivers and volunteers. That’s an important point, because there is not any specific course focused on stroke addressed to any professional, except the hospital nursery course that we have organized for 11 years. We also encourage patient-centered research, otherwise there is no way to advance in giving a better care to stroke survivors. Moreover, we offer advice in different dimensions: legal, labor, social, driving and sexual. Finally, we are trying to develop new platforms oriented to patients and caregivers that integrate all the information.
SAFE: Please tell us more about your organization.
ED: Fundació Ictus is an entity with a social presence with the mission of publicizing the disease, promoting research on it and supporting people who have suffered a stroke. Our main goals are popularizing the disease and spread how to prevent it, how to avoid it and how to treat it. Furthermore, we support stroke patients, offering support to people with disabilities, with alliances with other entities. In addition, we promote research on the disease in all its stages and from all perspectives.
