Chris Macey, Head of Advocacy for the Irish Heart Foundation
“The rate of death and permanent severe disability from stroke in Ireland has been reduced by more than 20% in the last decade. But hundreds of people are still dying every year when their lives could be saved. And thousands more are not receiving basic services that would enable them to make the most of life after stroke” says Chris Macey, Head of Advocacy for the Irish Heart Foundation and a SAFE Treasurer.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
CM: Irish stroke services compare well internationally in the vital early period after stroke occurs. But as soon as a person’s life is saved they typically start to regress through poor access to basic therapies in hospital. In therapy terms, patients then effectively walk off a cliff after they pass through the hospital gates – for most physiotherapy, speech and language or psychological services are grossly inadequate or non-existent unless they can afford to pay themselves.
As a result, more people than ever before are surviving stroke only for many to have their recoveries squandered by the failure to deliver the therapy services either in hospital or the community that will help rebuild their lives.
These services require upfront investment, but we do not need to spend more money on stroke. We just have to spend what we have in a different way. For example, our research showed that out of a direct cost of stroke to the Irish State of €557 million a year, up to €414 million was spent on nursing home care and less than €7 million on the community rehabilitation that can keep people in their own homes.
In other words the system starves vital acute and rehabilitation services of funding only then to spend huge amounts of money after the time patients can be helped most.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
CM: We need to recalibrate expenditure on stroke services in Ireland, through upfront investment in acute services and a much greater priority for community rehabilitation services.
The average onset of stroke here is at age 73 and because we will have 50% more 73-year-olds here within the next decade it is vital that we futureproof acute services, first by improving the standard of our stroke units – just one out of 28 fully meets ESO guidelines at present. We need around 200 extra therapists to meet current needs. We also need to invest in thrombectomy services that Irish doctors helped pioneer and to expand Early Supported Discharge (ESD) services that get patients home quicker and improve outcomes.
The development of ESD will also start to address the chronic deficits in terms of therapists working in the community where there are few champions at present for better services. In addition, we have helped to spearhead the development of community rehabilitation teams – working across neurological conditions – to continue therapies after ESD treatment has been completed. Their development in pilot locations and then nationally has to be speeded up however to address the huge unmet need among stroke survivors in the community.
More resources must also be provided to support stroke survivors living at home – the vast majority of stroke support in our country is provided by the Irish Heart Foundation without State assistance outside Dublin and the north west of the country.
SAFE: Please tell us more about your organisation.
CM: The Irish Heart Foundation is Ireland’s national charity fighting heart disease and stroke. Our main activities include:
• Provides information on heart health to the public and media
• Supports patients in managing heart disease and stroke
• Provides heart health programmes in schools and workplaces
• Co-ordinates the training of medics and the public in emergency lifesaving skills (CPR)
• Supports research, education and development in the medical profession
• Advocates for better patient treatment and services and for public health measures that protect and enhance cardiovascular health
We have been particularly effective in developing progressive public health policy in Ireland. We secured improvements to stroke services that have reduced mortality by 20% and permanent severe disability by more than a quarter in the last ten years.
We were a leader of the coalition that ensured Ireland became the first country in the world to ban smoking in the workplace that has saved a life a day in Ireland for 15 years since and that has reduced the youth smoking rate from 41% to 12%.
We also secured Ireland’s sugar sweetened drinks tax, along with restrictions on junk food marketing to children on TV and radio. In addition, we ensured that defibrillators are present on all flights into and out of Ireland and we helped secure major changes to the law to reduce the harm done by alcohol.
Kyiv, October 10, 2019– On the eve of World Stroke Day, representatives of the Ukrainian Parliament’s Committee on National Health, Medical Assistance and Health Insurance, National Health Service of Ukraine (NHSU), professionals providing Stroke Care to patients, and members of the public discussed what should be done by the state to ensure the availability of high-quality Stroke Care in order to reduce the mortality and disability from cerebrovascular disease.
The new Cabinet of Ministers of Ukraine, which has pledged to continue reforming the health care system, recently promulgated a Program where it set an ambitious goal of reducing the mortality rate by 5%. It is impossible to achieve this goal without creating a system of high-quality medical care for patients with acute stroke, as stroke is one of the leading causes of premature mortality and acquired disability in Ukraine.
In 2018-2019, Ukraine has taken the first steps towards creating a National Stroke Strategy. The Working Group, established by the order of the Ministry of Health (MOH) of Ukraine, has drafted the Stroke Action Plan in Ukraine for 2020-2030 and the Provisions on the network of healthcare facilities assisting patients with acute stroke specifying the requirements the hospitals are to meet. As of 2020, these services will be covered at the higher rates by the NHSU under the Guaranteed Medical Services Program. In addition, the MOH, together with the experts of the Working Group, collected information about the departments admitting acute stroke patients throughout the country. The experts were unanimous in that for our country the price of inactivity in this area far exceeds any costs of the right measures, any delay is unacceptable and it is to go ahead with the work started.
Prof. Mykola POLISHCHUK
“There are about 150,000 strokes every year in Ukraine. Many stroke patients are now being treated in general neurological or even therapeutic wards. This is unacceptable, and we request the local departments of health and hospital authorities change this situation as soon as possible, allowing stroke patients to be admitted only to specialised stroke wards. Research and real-world evidence in many countries around the world have shown that care provided in Stroke Units and Stroke Centers significantly reduces stroke mortality and morbidity as well as disability after stroke. According to the preliminary results of our data analysis, out of more than 500 wards admitting stroke patients in Ukraine, less than half have the necessary equipment for the diagnosis and treatment of stroke.
They are unable to perform the necessary workup and to carry out the necessary interventions. Up to 30-40% of stroke patients in Ukraine die within 1 month from the onset and less than 20% ever return to their previous level of daily activities. Our aim is to make sure that most of them reintegrate to the society and continue to live their life, ”- said Prof. Mykola POLISHCHUK, Neurosurgeon, the President of the NGO “Ukrainian Anti-Stroke Association”.
Dr. Maxim PEREBIYNIS
Dr. Maxim PEREBIYNIS, Subcommittee Chair, Ukrainian Parliament’s Committee on National Health, Medical Assistance and Health Insurance, answered the questions about the next steps the state needs to take in order to control stroke: “At the level of the Government, the Parliament and The President’s Office we are working to develop a program aimed at setting up a network of specialized stroke centers in Ukraine, with the involvement of the World Bank.
There are hospitals that already have trained doctors and necessary facilities, but many more are needed. However, a lot of work has yet to be done to properly plan the network of stroke centers, which should be located so that patients are delivered to the hospital on time (transportation should take less than 60 minutes).
To start with, it is necessary to analyze the existing institutions, technical and human resources in order to properly plan the network of these centers. Luckily, we don’t have to “reinvent a wheel”, we just need to implement what works well around the world. ”
Prof. Serhiy MOSKOVKO
Professor Serhiy MOSKOVKO, Neurologist, scientific adviser to Stroke Unit at Vinnytsia Oblast Psychoneurological Hospital, member of the Working Group under the MOH of Ukraine: The Working Group has drafted requirements for health care facilities that provide medical assistance for acute stroke. Compliance with these requirements demonstrates the hospital’s ability to provide high-quality stroke care. Overall, these requirements are an based on the requirements by the European Stroke Organisation adopted in many European countries. With institutions that meet these requirements, the NHSU will sign appropriate contracts in 2020 and will pay for the treatment of patients with stroke at an increased rate under the Guaranteed Medical Services Program.
We very much look forward to understanding and cooperating with the new team at the MOH of Ukraine. Our common goal is to make sure that every stroke patient in Ukraine has access to high-quality care and that hospitals that can provide such effective care have adequate supply for all the essentials, including alteplase, the drug for thrombolytic therapy. We need to significantly increase the number of thrombolyses in the country, then this will affect public health and mortality rates. For example, there are over 25,000 thrombolitic treatments performed in Poland per year compared with only 400 in Ukraine.
Mrs. Oksana MOVCHAN
Deputy Head of the NHSU Mrs. Oksana MOVCHAN told how the NHSU will fund the delivery of medical care to patients with acute stroke starting in April 2020: “In 2020 the tariff is going to be UAH 19,500 (about €720) per case. The tariff covers the workup for verification of the diagnosis, necessary care, medications from the National Essential Medicines List, excluding drugs provided through the government or local programs (such as thrombolytics), and acute rehabilitation. This tariff is almost three times as high as was paid under the medical subvention. We plan to arrange emergency medical services to deliver stroke patients only to those hospitals where they can receive timely and quality care.”
Mrs. MOVCHAN also emphasized that only hospitals that meet the requirements for acute stroke care will be able to receive payments from the NHSU at an increased rate. They are supposed to have all the necessary equipment and specialists to timely diagnose and treat stroke, in particular the equipment for neuroimaging: CT and / or MRI. The NHSU will not only pay for the service, but also monitor whether or not the hospitals comply with the terms and conditions of the contract. “In particular, this care package is absolutely free of charge for the patient, and hospitals cannot charge patients or families for this service,” Mrs Movchan said.
Dr. Lyudmila LYPOVENKO, Head of the Neurological Department, the Second City Hospital in Bila Tserkva, shared her vision of the situation at the regional level: “As early as 2011, we began to perform systemic thrombolysis and have appreciated the difference between modern and old stroke care. In 2016, we set up a modern Stroke Unit with all the equipment and a multidisciplinary team. Now all stroke patients from Bila Tserkva and surrounding villages are referred to our hospital. A stroke patient who is a candidate for thrombolysis, bypasses the emergency department and goes directly to the CT scan, where the treatment is started immediately. We have done a lot to properly organise care pathways, however at times we are still facing a lack of thrombolytics provided by the state or local government. In 2019, we performed thrombolytic therapy in 55 patients, although according to the state program, we received the drug for only 10 cases. ”
• Every year, about 150,000 strokes occur in our Ukraine.
• Stroke and cerebrovascular disease are the second cause of death (more than 100,000 deaths per year or 13-15% of all deaths) and the leading cause of acquired disability in adults.
• Stroke mortality in Ukraine is several times higher than in Western Europe.
• High-qualitative stroke care is inaccessible, and 30-40% of stroke patients die within 1 month of onset.
• Stroke can strike at any age, and one third of stroke patients in Ukraine are people of working age.
• Ukraine has endorsed the European Stroke Action Plan for 2018-2030 and is moving towards a national stroke strategy aimed at reducing the burden of the disease.
Thus, taking into account the Ukrainian Government’s Action Plan goal to reduce the mortality rate along with the epidemiological situation in Ukraine, we emphasize the urgent need to create in Ukraine a network of healthcare facilities that provide assistance to patients with acute stroke (120-150 Acute Stroke-Ready Hospitals or Stroke Units and 40-45 Stroke Centers).
In order to provide high-quality care, timely imaging of the brain, its vessels and the heart as well as laboratory tests and evidence-based treatment, including IV thrombolytic therapy (if not contraindicated), should be guaranteed to all acute stroke patients.
This approach will reduce the burden of stroke for individuals, their families, local communities and the state as a whole.
Dr Marina GULIAIEVA, Ukrainian Anti-Stroke Association
Dr Dmytro LEBEDYNETS and Dr Mychilo Tonchev
Dr Yuriy FLOMIN, Ukrainian Anti-Stroke Association
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):
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.
Chantal Keller, President of Blëtz Asbl
“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.
A useful repository for reliable and easy to use information on 10 modifiable stroke risk factors translated to Polish, Spanish, Portuguese, Russian and French.
Brussels, 17/09/2019: A SAFE-owned website on stroke prevention and modifiable stroke risk factors goes live today at www.strokeprevention.info in five additional European languages: Polish, Spanish, Portuguese, Russian and French.
Increasing the number of languages on this website will allow greater accessibility of its content for millions of people who speak these languages, alongside the website’s original language, English.
Around 17 million strokes occur worldwide each year, despite compelling evidence that it is a largely preventable condition. Stroke shares risk factors with other cardiovascular diseases (CVDs) and with many other non-infectious, or non-communicable diseases (NCDs). Addressing stroke risk factors requires both individual and society level interventions – addressing lifestyle and medical issues. This knowledge motivated SAFE to create the website www.strokeprevention.info. The aim of this website is to inform and inspire people to take individual interventions, such as giving up smoking or taking better control over their blood pressure and take an active role in preventing stroke.
Based on the INTERSTROKE study’s findings, ten modifiable risk factors are responsible for 90% of strokes. This website collates all relevant information on the most common risk factors such as: hypertension, physical activity, diet, obesity, smoking, cholesterol, heart disease, alcohol, stress and diabetes. In addition to being written in a lay-friendly language, all website information is in a format appropriate for people with disabilities.
This website is developed and owned by Stroke Alliance for Europe (SAFE), which retains full editorial control over the content.
The original version of this website was originally launched in English in 2018 and was supported by an educational grant from Amgen. The translation into five European languages was enabled by Boehringer Ingelheim in 2019. SAFE is grateful to the generous supporters of its work, which enables important stroke prevention information to reach wider audiences.
The Stroke Alliance for Europe (SAFE) a non-profit-making organization formed in 2004. It is the voice of stroke patients in Europe, representing a range of patient groups from 30 European countries. SAFE’s goal is to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation.