Stroke Survivors’ Needs in Finland: Stroke rehabilitation insufficient as it is now

Stroke Survivors’ Needs in Finland: Stroke rehabilitation insufficient as it is now

When it comes to stroke treatment and aftercare, Nordic countries are often believed to be among the most advanced in Europe. Even so, there is a room for improvement as we learned from our conversation with Finnish Brain Association’s Executive Director Tiina Viljanen.

Tiina Viljanen, Executive Director of the Finnish Brain Association

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
TV: The rehabilitation, for sure. In our country’s hospital districts, at best more than 40 per cent of stroke survivors are admitted to multi-professional rehabilitation. This is in line with national recommendations. In some hospital districts, however, multi-professional rehabilitation is only provided to a select few patients. This means that our country’s overall situation in stroke rehabilitation is poor: only 10–20 per cent of stroke survivors are referred to multi-professional rehabilitation. That is less than half of those who need rehabilitation. Every year, approximately 26,000 Finns suffer a stroke. A third of them die.

We also see that follow-up care for stroke patients in Finland depends too much on the patient’s domicile and age. Age and domicile play a role in both whether the patient receives rehabilitation and how long the rehabilitation lasts. Those over 65 are the most disadvantaged.

We work to end this kind of age discrimination and remind that studies show rehabilitation of elderly stroke patients in particular is worthwhile. We point out that timely, efficient stroke rehabilitation saves costs for society, as it reduces the need for long-term institutional care and decreases social welfare costs, among other things. Sadly, insufficient support measures for those affected by aphasia too. Therefore, the Finnish Brain Association keeps demanding that that people with a speech impairment also be provided with immediate, appropriate therapy and the possibility to express themselves.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
TV: Solution to insufficient stroke rehabilitation has to come from and by decision makers, in other words politicians, who regulate our healthcare system. Hospital districts and municipalities too have key role, while responsibility to arrange rehabilitation lies on to them. Therefore, we strive to educate, inform and influence decision makers and public service providers at all levels of the system, starting from very up from the Parliament. In the Parliament we have our own “spearhead”, the Brain -group, in which we have members from every acting political party. The most powerful argument we can use while influencing decision makers is money.  Stroke is third the most costly NCD in our country. This expenditure could lowered alone by targeting rehabilitation correctly. Having said this, I have to stress that we also do work intently to raise public awareness on prevention of stroke, stroke symptoms, living with stroke and legal rights of stroke survivors.

SAFE: Please tell us more about your organisation.
TV: Finnish Brain Association is a non-governmental organization and we have just celebrated our 40. anniversary. Our funding comes from Veikkaus, the single gaming company owned by the Finnish State. We have over 40 local member associations and we operate nationwide. Association’s headquarters, The Suvituuli-center, is situated in southwest Finland in the city of Turku. Our main goal is to ensure that all stroke survivors receive high-quality and professional support and to minimize the number of stroke patients. We organize adaptation training courses, rehabilitation and recreational activities and educate our members and professionals in the field. We are active on the social media and publish the Aivoterveys (Brainhealth) magazine plus various other publications dealing with cerebral circulatory disorders. And last but not least, I would like to mention our prized Priceless processor -project through which we support the prevention of cerebral circulatory disorders.


Stroke Action Plan for Europe Implementation: First Steering Committee meeting held today in Munich

Stroke Action Plan for Europe Implementation: First Steering Committee meeting held today in Munich

The first Steering Committee meeting for implementation of the Stroke Action Plan for Europe (SAPE) was held today in Munich. The Steering Committee’s main task will include a definition of a strategy framework, the Key Performance Indicators (KPIs) for monitoring the quality of care and
reaching the targets, as well as a definition of a dissemination strategy.

‘We have a golden moment now for this plan: we can prevent and treat stroke, and globally stroke plans are shifting the tide. On the other hand, if we do not all work together- health professionals, stroke support organisations, health care providers and governments- the pure number of predicted strokes will overload the health care systems of Europe.’ said Hanne Christensen, Chair of the Steering Committee.

The SAPE implementation will cover all aspect of stroke as defined by the domains: Primary prevention, Organisation of stroke services, Management of Acute stroke, Secondary Prevention, Rehabilitation, Evaluation of outcomes and quality and Life after stroke, following the recommendations from the published document. After the first definition of the KPIs, they will be finalized in close collaboration with stakeholders, including but not limited to national scientific societies and governmental representatives. A monitoring platform will be established to ensure accountability in reaching the targets. A dissemination strategy will be further defined in collaboration with stakeholders.

To increase the impact of this initiative (SAPE), the Steering Committee will collaborate with other existing initiatives in improvement of quality in stroke care in Europe. Within that frame, a collaboration with IRENE-COST, World Stroke Organisation (WSO), WHO Europe or other stakeholders was discussed in the Steering Committee meeting in Munich.

About the Stroke Action Plan for Europe

The Stroke Action Plan for Europe 2018-2030 is a document created as a result of collaborative work between SAFE and ESO.

Building on the preceding Helsingborg Declarations of 1995 and 2006, the Stroke Action Plan for Europe creates an aspirational framework to drive healthcare policy, research priorities, local stroke management and patient-focused care to meet the need demonstrated in the ESO/SAFE Burden of Stroke report, with €45 billion direct and indirect healthcare costs each year, a 34% increase in strokes by the year 2035 due to the ageing population, and huge variations in the level of stroke care available across Europe.

The popular version of the Stroke Action Plan for Europe 2018-2030 can now be downloaded from HERE.

The scientific version of this document is also available starting from today and can be downloaded from the following LINK.

About the Steering Committee for implementation of the Stroke Action Plan

The Steering Committee consists of one chair, two co-chairs (one from SAFE, one from ESO), eight Steering Committee members (six from ESO, two from SAFE) and two advisors (ESO).

Members of the Steering Committee:

Chair (ESO): Hanne Christensen

Co-Chair (SAFE): Arlene Wilkie

Co-Chair (ESO): Francesca Romana Pezzella

Members (SAFE): Grethe Lunde, Jelena Misita

Members (ESO): Bart van der Worp, Martin Dichgans, Diana Aguiar de Sousa, Robert Mikulik, Cristina Tiu, Urs Fischer

Advisors: Bo Norrving, Valeria Caso

ESO support: Luzia Balmer


SAFE’s new Director General commenced in post on the 12th August 2019

SAFE’s new Director General commenced in post on the 12th August 2019

SAFE is very pleased to announce the new Director General, Arlene Wilkie, commenced in post on the 12th August, leading and overseeing the delivery of all SAFE activity and projects, working with our existing experienced team of Jelena Misita, Communications Manager, Gary Randall, SAFE European Research Officer, Lucinda Shaw, Partnerships Manager and Sandra Jackson, Secretariat.

Arlene Wilkie, SAFE Director General

Arlene Wilkie, the new Director General, comes with a wealth of experience and expertise, derived from a variety of organisations and roles over the last twenty years in the healthcare sector, primarily in patient focused organisations. These include Director of Research and Policy at Breast Cancer Campaign, Chief Executive of the Neurological Alliance (a membership organisation of 70 neurological organisations in England), Chief Executive of The Migraine Trust, and Interim Director of Services and Influencing at the Brain Tumour Charity UK.

“I am so pleased to have joined SAFE. In the brief time I have been within here I have been so impressed by the passion of the staff and the board, and their determination to see a reduction in the number of strokes in Europe and the impact they have on peoples lives. I will strive to raise the profile of stroke and stroke survivors and ensure all is done to achieve the stroke action plan for Europe. I am also really looking forward to getting to know and working with all our supporters and members.” said Arlene.

One of Arlene’s great strengths is alliance building, particularly around policy development and implementation, and in her role she will be co-chairing the implementation committee of the Stroke Action Plan for Europe, and playing a leading role in our partnership group. Arlene can be contacted at

“SAFE has been through a very thorough recruitment process, and from over 130 initial candidates we are thrilled that Arlene has agreed to join us. Her track record is very impressive and over the next few years with the need to ensure sustainability of SAFE whilst pursuing important objectives such as the Stroke Action Plan for Europe and the strengthening of stroke associations in each country of Europe we know we will benefit from her leadership. The appointment of a Director General is a bold step and demonstrates SAFE’s belief that stroke care and the needs of stroke survivors must be pushed higher up the agenda.” stressed Jon Barrick, SAFE President.

Survivors, carers and therapists – would you use technology to help rehab? We want to know!

Survivors, carers and therapists – would you use technology to help rehab? We want to know!

Project AMoRSA

AMoRSA stands for “Adaptive and highly motivating platform for the rehabilitation of patients with arm palsy following a stroke“. The project kicked off on March 1st, 2017 (ending February 29th, 2020).

In Europe, millions of people live with chronic paralysis after a stroke. An efficient strategy for systematic rehabilitation measures that is suitable for everyday use can help patients regain their mobility and carry out important everyday activities such as eating, drinking or dressing without outside help.

The aim of the project is to enable stroke patients with complete arm paralysis to rehabilitate their mobility providing them with complete arm paralysis with efficient, highly motivating and systematic neurorehabilitation suitable for everyday use. For this purpose, a training system will be created whose central element is a brain-muscle-machine-interface, which controls an exoskeleton attached to the paralyzed arm. The movement feedback generated by the actuators reactivates compromised connections between brain and muscles closing the brain-to-muscle loop and producing functional neuroplasticity. In addition, the rehabilitation system is embedded in a digital health game that intuitively communicates health information and training progress to patients and continuously motivates them.

By combining an orthotic robotic system with a direct feedback function, a novel training system for neurorehabilitation will be developed and the first clinical pilot will be performed during the project. This rehabilitation environment enables chronically paralyzed stroke patients to participate in life without restrictions again.

The burden of stroke is dramatic at many levels and there is a lack of controlled clinical trials and cost/efficacy analyses to incorporate new methods into everyday clinical practices. Furthermore, in many of the new developments and therapies, there is a clear lack of stakeholders involved during clinical research to clinical trials and practice transition. Current trends in stroke rehabilitation include the use of robotics (mainly to compensate  therapists shortage and increase of demand), the use of serious games (computer gaming, virtual and augmented reality) to increase patients’ engagement and intensity of training, the telerehabilitation (home-use video games and training and movement assessment gadgets) and the use of neural interfaces to re-activate dormant or to generate via neuroplasticity mechanisms, connections between brain and muscles. All these components are present in AMORSA project.

With this survey, we want to investigate the demographics of the steadily changing stroke survivors community (including not only patients but their caregivers and therapists), their common limitations, interests and their opinion about these new rehabilitation trends. Furthermore, we want to quantify the potential adoption of new-coming treatments/therapies based on these trends. We have designed 3 different surveys, one for the patients, another for their caregivers (family and relatives) and the last one for therapists (neurologists, physiotherapists, etc).

Patients: we want to quantify the a) impairment level of the patients, especially the chronic ones; b) their current involvement in treatment, prevention or assistive measures; c) their use of technology (TV, smart-phone, video-games, etc) and their technology literacy; d)  expectation regarding new therapies based on the mentioned trends; e) acceptable duration and intensity of rehabilitation therapies based on the trends and their acceptance rate; f) social aspects within the stroke community (e.g. interest in patients forums); g) the cost/benefit or compromise of rehabilitation measures based on the trends (e.g. acceptable specifications of an implanted solution for rehabilitation or assistive technology and the movement restoration achieved); h) interest in home-based rehabilitation gadgets based on the trends.

Care-givers: we want to quantify the almost the same as for the patients but from their perspective (normally we have observed a significant difference in perception in aspects of interest, motivation, impairment, etc);

Therapists: we want to quantify their a) demographics and skills; b) the clinical assessment scales (e.g. ARAT, MRC, NIHSS, Fugl-Meyer) and rehabilitation methods used (e.g. robots, mirror, group therapies); c) their service characteristics/limitations (e.g. number of patients per therapist, time per session etc); d) new therapies based on trends minimum requirement to be adopted (e.g. preparation time, easy to use etc); e) compensation limitation to accelerate the adoption of new therapies; f) relevance of predictor of recovery or biomarkers for patients stratification for rehabilitation therapies; g) their opinion on cost/benefit or compromise of rehabilitation measures based on the trends (e.g. acceptable specifications of an implanted solution for rehabilitation or assistive technology and the movement restoration achieved); h) interest in home-based rehabilitation gadgets based on the trends.

Please take part in this survey by clicking on these links below:


Relatives / caregivers:


Stroke Survivors’ Needs in Latvia: Rehabilitation without waiting lists and medicines’ availability

Stroke Survivors’ Needs in Latvia: Rehabilitation without waiting lists and medicines’ availability

This week, Inese Maurina from Latvian organisation, offered SAFE team an insight into the needs of the Stroke Survivors and #LifeAfterStroke issues in her country.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
IM: I would like to stress two things:

1) Rehabilitation – there are long waiting lists to get the rehabilitation services after stroke. Patients and their relatives are also confused because of lack of sufficient information on where to go, what to do next, where to look for help, where to get rehabilitation services, etc.

Due to these reasons lot of patients receive rehabilitation too late or not as much as needed.

2) Availability of medicines and patient adherence

Increasingly effective medications are available for the prevention and treatment of stroke risk factors, but often patients cannot afford to pay for them, so they stop taking them or even do not start to use medicines. This leads to very serious consequences – illness, disability or death. Similarly, many patients do not qualify for medication reimbursement due to very strict requirements.

According to data of Stroke Units, there are many patients who return to the hospital and one of the reasons is discontinuation of medication. This is due to both – the financial capacity of the patients and also the lack of understanding of the need for medication and poor cooperation with their physicians and specialists.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
IM: Not only stroke has serious health consequences, but it also has a very heavy social and financial burden on patients, their families and society as a whole. According to estimates of the Latvian Health Economics Association, patients and their relatives bear almost one third of the total cost of stroke treatment in Latvia, which is over 70 million euros per year. According to health economists, such a “co-payment” for stroke patients is too high given the high rates of disease mortality and disability. The burden of the disease on the social security budget could be substantially reduced by ensuring timely stroke prevention, treatment and quality rehabilitation.

It would be important to increase the healthcare budget spent on the post-stroke rehabilitation services in order to make this service available to all patients and without long waiting lists. There is also a need for specialists and innovative technologies to improve the rehabilitation services in Latvia. It would be also important to develop clear patient pathways information materials to be disseminated to both stroke units and GPs.

The health budget for stroke prevention needs to be increased, as it will reduce the number of sudden strokes and thus require lower treatment, rehabilitation and disability costs.  There is a need to increase also budget for innovative and effective medical medicines and to improve the collaboration of patients and doctors in order to increase the patient adherence.

SAFE: Please tell us more about your organisation.
IM: is non-governmental organization founded in 2011, bringing together various heart and cardiovascular disease patients and their relatives. Our mission: to reduce the impact of heart and cardiovascular diseases by promotion of healthy living, educating society regarding the risks of diseases, ensuring the access to health care information and advocacy of patients.

Our aims are:

Protecting the rights of cardiovascular patients to access quality medical care (medicines, devices and services);

Identify and reduce factors that prevent patients with cardiovascular disease from receiving quality healthcare;

Improve the quality of life of people with cardiovascular diseases through active involvement in the development of national cardiovascular policy, in cooperation with state and municipal institutions;

Facilitate the exchange of information between patients, medical professionals and the public with the aim of helping patients with cardiovascular disease to successfully organize their daily lives, integrate into public life, and achieve professional success;

Carry out educational work to raise awareness among cardiovascular patients and the general public about cardiovascular disease, its prevalence, risk factors and treatment;

Promote a healthy lifestyle;

Develop projects to improve the quality of life of patients with cardiovascular disease.

Since 2013 patient organization is an associated member of the international organization SAFE (Stroke Alliance for Europe).



An international survey about spasticity

An international survey about spasticity

Do you or someone you know have experience with spasticity and Botulinum Toxin Type A injections?

SAFE invites you to participate in an international survey, conducted by Carenity, an online patient community, and biopharma Ipsen to help advance medical research and improve the lives of other patients.

Both patients and caregivers of patients with spasticity due to stroke (as well as traumatic brain injury or spinal cord injury) who are currently receiving Botulinum Toxin Type A injections or who have stopped receiving these injections less than a year ago can participate.

Botulinum toxin effect usually peaks around 4 to 6 weeks after injection, then it slowly decreases. This decrease is called the waning of botulinum toxin effect. The aim of this survey is to better understand patients’ experience with botulinum toxin type A injections, in particular:

– to better understand how patients experience the waning of botulinum toxin type A effects
– to identify the impact of the waning of botulinum toxin type A effects on the patient’s quality of life
– to describe patient populations profile
– to assess the reasons for stopping botulinum toxin type A injections

This survey will be the subject of communications during scientific congresses or scientific publications that will be redacted in collaboration with an international team of medical experts.

A synthesis of the results will be made available after the publications.

This international survey is conducted in Europe (France, Germany, Italy and the UK) and in the US until September 13th.

It is available in 4 languages:





Thank you very much for your participation!

Participation in this survey is unpaid.
To find out more about how your data will be processed and how to exercise your rights, read the survey information page, accessible when you click on the link provided above in this text.







18 Ways to Improve Cognitive Problems After Stroke

18 Ways to Improve Cognitive Problems After Stroke

First published on ARNI Institute for Stroke Rehabilitation website

A change in cognitive ability is common after a stroke. Did you know that as many as two-thirds of stroke survivors may experience cognitive impairment as a result of their stroke.? If this is you, or you know someone who seems possibly to be going through such difficulties, here’s 18 steps you can take to try and improve cognition difficulties after stroke:

First, what is cognition?

Put simply, cognition is thinking; it is the processing, organising and storing of information – an umbrella term for all of the mental processes used by your brain to carry you through the day, including perception, knowledge, problem-solving, judgement, language, and memory. The brain’s fantastic complexity means that it can collect vast amounts of information from your senses (sights, sounds, touch, etc) and combine it with stored information from your memory to create thoughts, guide physical actions, complete tasks and understand the world around you.

A stroke can affect the way your brain understands, organises and stores information. This brain injury can result in damage to the areas of the brain that are responsible for perception, memory, association, planning, concentration, etc. The severity and localisation of the stroke will effect the type and level of difficulties experienced by an individual, and will vary from person to person.

It can be difficult to plan and organise daily tasks. The brain is constantly working in the background, allowing us to complete a task based on prior knowledge, experience, and learned behaviour.

You don’t have to consciously think how to boil the kettle, change TV channels or put on your socks before your shoes: you just do it. But damage to the brain can result in problems with these planning and execution mechanisms.

You might not be able to think how to do a simple task, or you may get the sequence wrong (for example, shoes before socks). You might have trouble with orientation, which could include not knowing the date, day of the week, or even who you are with. Problem-solving too can become difficult. Making decisions, solving problems, understanding numbers and managing money can be a challenge.

Good cognitive function also relies on memory. The brain uses 2 types of memory to hold information, the long and short term memory. Short-term memory is the temporary store for small amounts of information. This information is kept readily available and can be recalled quickly. For example, a phone number can be remembered long enough for you to dial it. Long-term memory is where you keep your experiences, thoughts and feelings from the past and things stored here can be stored indefinitely. Memory problems could result in difficulty storing or recalling information. This could include problems remembering appointments, important dates or in the case of short term memory, what you were about to do, or what somebody just said to you.

Problems with concentration are common. Concentration is required for effective cognitive function, as many of your thinking process require concentration. Concentration requires our brain to filter out much of the information coming in from your conscious thinking, so you are not distracted by it.

Stroke can impact on this ability because of damage to the areas of the brain responsible for this, and also because tiredness, pain and emotional problems have an effect of the ability to stay focused and concentrate. This could result in difficulties when trying to follow a television programme, or conduct a conversation with a friend. Multi-tasking too is difficult.

18 Things to try

  1. Cognitive problems are confusing and frustrating. But, there are some things you can to do help. Most improvements occur in the first 3 months after a stroke, after which they slow down, but the brain will keep creating new neural pathways after this time.
  2. To help with memory and perception problems, try using a diary, day planner, calendar or notepad. Writing down appointments and creating to-do-lists can help you to remember them.
  3. Photos and pictures can help to ‘trigger’ your memory.
  4. Check your calendar, newspaper or diary to help you remember the day and date.
  5. Make notes of important conversations.
  6. Use notes, lists and labels around the house and help prompt you to remember. Mobile phones are a great resource. Set alarms, reminders and memos to remind you throughout the day.
  7. It is important not to overload yourself, finish one task before you start another. Plan your day and prioritise tasks.
  8. Try slowing the activity down, working through a step at a time.
  9. Keep instructions clear and short, no more than 5 or 6 words to a sentence, and only 1 or 2 instructions at a time.

Please read the full list here.


Stroke Survivors’ needs in Cyprus: Patients and their families seem to be underinformed

Stroke Survivors’ needs in Cyprus: Patients and their families seem to be underinformed

Eva Pettemeridou, PhD, Clinical Psychology

Eva Pettemeridou from the Cyprus Stroke Association spoke this week with SAFE team about Stroke Survivors’ needs and #LifeAfterStroke in her country. She pointed out the lack of information and services after stroke as one of the most important issues.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
EP: One of the issues pertaining to life after stroke in our country is the lack of information and services following the initial stroke treatment and prognosis. Initially, patients and their families seem to be underinformed, if at all, on the effects of stroke for each individual case, and as an effect the importance of receiving in or out –patient rehabilitation. As a result, the individual returns home without receiving individually tailored treatment that will help in improving post-stroke deficits. Therefore, these individuals and their families return home with little awareness of what is to be expected from the patient cognitively, physically, and psycho-socially, and potential changes necessary for the individual to function independently.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
EP: The Ministry of Health can hire staff that can provide information on the importance of receiving rehabilitation based on the needs of each individual, and potential services provided in Cyprus. However, for this to be feasible the Cyprus Stroke Association (CSA) should focus its efforts in influencing all relevant authorities and stakeholders. This may be addressed via directly contacting politicians, writing newspaper articles, and using of social media to bring greater awareness. In addition, by establishing collaborations with different national and international organizations (incl. universities) and companies (e.g. rehabilitation centers, pharmaceutical companies), CSA may be able to further influence relevant authorities in providing maximum support to stroke survivors.

SAFE: Please tell us more about your organisation.
EP: The Cyprus Stroke Association (CSA) was founded on February 10, 2009 (Registration number 3419) and is a Non-Governmental Organisation acting within the Cypriot and European legislation. The vision of the CSA is to work towards the prevention of cardiovascular incidents in Cyprus and to offer maximum help and support to individuals who have suffered a stroke, their families and kin environment.  The mission of the CSA is to prevent strokes, and reduce symptoms through information and education. The aim of the CSA is to identify high-risk individuals and inform them appropriately, access people with stroke and help them receive appropriate treatment and care and improve the quality of life of people with stroke and their families. We also aim to formulate existing legislations for people with stroke, provide information about their rights and the sponsorship offered by the state apparatus.




Spasticity after stroke: Will my hand get better?

Spasticity after stroke: Will my hand get better?

This article first appeared on 
Written by Tom Balchin

Upper limb spasticity is suffered by a full 70% of the stroke population, By three months post stroke 19% of people will experience spasticity and this figure increases to 38% of people after 12 months.

Did you know that it’s one of the biggest things that survivors tell consultants, GPs, family, carers and friends that they wish they could positively alter?

Spasticity can develops months or even a year after stroke — and often may become more noticeable as recovery moves on and can have a very significant bearing on your quality of life. Let’s look at what spasticity is:

Muscle stiffness;
Upper extremity hypertonia (excessive muscle activity);
Loss of fine motor control (for example small hand movements);
Soft tissue contracture;
Muscle overactivity leading to the reduced ability to relax;
Muscle spasms;
Changes in limb posture; and
Muscle fatigue.

Let’s see if you can grab some tips here to help you beat its limitations.

Spasticity is caused by miscommunication between your brain and your muscles. It has neural and non-neural components to it. Let’s delve deeper: knowledge is power,

Normally your muscles are in constant communication with your brain about how much tension they’re feeling, and the brain has to constantly monitor this tension to prevent tearing. Your brain continuously sends out messages telling your muscles when to contract and relax.

You can read the full article here.

Stroke Survivors’ needs in Iceland: A lack of follow-up from the healthcare system

Stroke Survivors’ needs in Iceland: A lack of follow-up from the healthcare system

Caption:  On the International Stroke Day 2018 our members HEILAHEILL, patients, neurologists, etc.  to promote the disease and disseminate information to the public in KRINGLUNNI, Reykjavik’s largest shopping center, which attracted much attention. Chairman of HEILAHEILL Thorir Steingrimsson and the specialist in neurology (thrombectomy) Bjorn Logi Thorarinsson in National University Hospital of Iceland | LSH · Department of Neurology.

“According to circumstances in ICELAND we are unable to make significant survey on prevention, treatment and rehabilitation of the stroke or exploring the burden of the stroke because we have only 360.000 citizens.  Therefor it is difficult for the authorities to answer our queries about the incidence of stroke across the country. But however we are trying to follow Stroke Action Plan for Europe 2018-2030 by taking the guidance of professionals and health authorities” says the Chairman of HEILAHEILL, Icelandic stroke support organisation, Thorir Steingrimsson.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
TS: Being in SAFE gives us the opportunity to compare ourselves with other health systems in other European countries regarding the stroke.  Many things are similar to us and the other Nordic countries, but there are a number of factors that are similar to the burden of the stroke with other nations, for example there is a lack of follow-up from the healthcare system, when individuals are enrolled in the community. The main problem in our country is that the health authorities and ÖBÍ (The Organisation of Disabled in Iceland) which we accept money from, do not recognize aphasia after stroke as a special disability category in the healthcare system, but it is mixed with aphasia due to age or other trauma. The majority of those who have aphasia after stroke in our country do not experience themselves as ratifying the citizens of society. It is a great shame. Therefore, HEILAHEILL has worked with professional, speech therapists and other patient associations to raise the awareness of the health authorities and the public of this disability. We realize that this is starting to work, as the current government is beginning to recognize the problem i.a. support us financially specifically in equating education with this disability category

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
TS: We still have opportunity to do many things, which larger nations find difficult to do, for example make a plan for decision party about stroke treatments over the hole country.  In comparison, we can be likened to a little drill next to a big oil ship.

Healthcare professionals have done tremendous progress in thrombectomy, over the past two years in Landspítali in Reykjavík, which is the largest and leading factor in healthcare in the country and estimate it to be national 2020!  HEILAHEILL has decided to introduce this improvement among the public and in the country and use this opportunity to raise public awareness of the first signs of stroke and and urges the public to push the government to put more money into reducing the burden of a stroke!

SAFE: Please tell us more about your organisation.
TS: HEILAHEILL is a independent companionship for stroke survivors with individual membership for the whole country. The company have opportunity to meet the decision-makers by the authorities face-to-face, and they have supported us in our policy and it is also close relationship between people In HEILAHEILL and professionals over the country.

Therefore there is compelling evidence in ICELAND that stroke is highly preventable, treatable and manageable, and there is a potential to drastically decrease the burden of stroke, including substantially reducing its long-term consequences. This requires the joint actions of Ministries of Health and Social Care, other governmental bodies, scientific and stroke support organisations, healthcare professionals, clinical and preclinical researchers and industry and most of all, a good and powerful communication with patient organizations.

The benefits of tPA in patients with acute ischemic stroke are time-dependent, and guidelines recommend a door-to-needle time of 60 minutes or less. Professionals in Iceland say the average has dropped from 80 minutes to 25 minutes in the last three years!

HEILAHEILL has released an app in smartphones with information on the first signs of stroke. And when it is inserted in the beginning you place your social security number, it makes it your personal safety button to the emergency line and they positioning the device with precision. The smartphone tells who is calling for help, age, gender, wherever you are in the country!