Oct 20, 2019
Author: Anna Tsiakiri, PhD, Psychologist from the Greek stroke support organisation, Hellenic Alliance for Stroke
This weekend, the Hellenic Alliance for Stroke in cooperation with the Hellenic Neurological Society, Postgraduate Program “Stroke” of Democritus University of Thrace, Hellenic Society of Cerebrovascular Diseases, Department of Educational and Social Policy of Macedonia University co-organized a two-day scientific event on 19th & 20th October 2019.
The scientific part of the event consisted of lectures from distinguished speakers specialised in Stroke, both in terms of medical care and rehabilitation.
The informative event, that was addressed to general public, aimed to provide useful information about preventing Stroke- how to recognize stroke symptoms, how we should react. A special tribute was made to stroke survivors.
The theatrical group of students of Democritus University has prepared a performance in order to raise awareness of stroke prevention, while HOPA/FAST heroes presented their great work in different parts of Greece.
Hellenic Alliance for Stroke presented their activities and the role of SAFE.
Finally, the event was closed with a Latin performance.
Oct 18, 2019
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.
Oct 17, 2019
Leaders in atrial fibrillation and wearable technology to develop educational content around atrial fibrillation to help identify and support those at increased risk of stroke
Press Release | THURSDAY, OCTOBER 17, 2019
The Bristol-Myers Squibb-Pfizer Alliance and Fitbit today announced at the TIME 100 Health Summit in New York that they are working together to help drive timely diagnosis of atrial fibrillation (AFib) with the aim of improving earlier detection in individuals at increased risk of stroke. The BMS-Pfizer Alliance and Fitbit plan to collaborate on the development of educational content and guidance to support people at increased risk for AFib. Upon submission and U.S. Food and Drug Administration (FDA) clearance of the AFib detection software on Fitbit devices, the parties will aim to provide users with appropriate information to help encourage and inform discussions with their physicians.
“We’re in a new era of healthcare, where we’re not only focused on developing treatments but also looking at the potential of technology and data to help patients learn more about their health,” said Angela Hwang, Group President, Pfizer Biopharmaceuticals Group. “We are excited about wearables and how our work with BMS and Fitbit may potentially help patients and physicians detect and understand heart rhythm irregularities.”
AFib is the most common type of irregular heartbeat and is a significant risk factor for stroke.1,2 Approximately eight million people in the United States are projected to be affected by AFib in 2019.3 As the U.S. population ages, this number is expected to rise, as adults aged 65 and older are at an increased risk of developing the condition.3 Because AFib can be asymptomatic, it can often go undetected, and some studies suggest that more than 25 percent of people who have the condition find out after they have a stroke.(1,4)
“At Fitbit, we’re focused on making health more accessible and, through our efforts with the BMS-Pfizer Alliance, we have the potential to support earlier detection of atrial fibrillation, a potentially asymptomatic condition that affects millions of Americans,” said James Park, Co-founder and CEO of Fitbit. “With our continuous, 24/7 on-wrist health tracking capabilities, and our experience delivering personalized, engaging software and services, we believe we can develop content to help bridge the gaps that exist in atrial fibrillation detection, encouraging people to visit their doctor for a prompt diagnosis and potentially reduce their risk of stroke.”
Wearable technology has continued to become more integrated in the healthcare landscape(5) as people have recognized the value that 24/7 health tracking can have for people of any age or health status, including those at increased risk for specific conditions. Yet, those who use wearables to track their heart rhythm may lack the education or guidance on what to do with the data gathered from their device.6
“Too many people discover that they are suffering from atrial fibrillation only after experiencing a stroke. In fact, some studies suggest that this is true for more than 25 percent of people who have the condition,” said Joseph Eid, M.D., Head of Medical Affairs, Bristol-Myers Squibb. “These efforts with Fitbit exemplify not only our unwavering commitment to addressing the evolving needs of patients with atrial fibrillation, but also our dedication to advancing care by embracing technology as a part of routine clinical practice.”
Please continue reading here.
Image source: Fitbit.com
Oct 14, 2019
SAFE has joined DrugStars, a mobile application that enables you to make donations to your favorite charity just by taking your medicine as prescribed.
Drugstars ApS is a Danish company founded by Claus Møldrup, a former professor at the University of Copenhagen in modern medicine. He founded it together with Claes Rasmussen, former CEO at TWBA, Finn Overgaard, former CEO at RelationshusetGekko, Martin Plambek, former GM strategic marketing at Maersk Group, Jesper Kilbæk, former director of a bank, and Paul Clements, creative partner at Mensch.
Basically, DrugStars is an app that reminds you to take your medicine and awards you with stars that you can donate to health charities. But there is so much more in it: DrugStars hopes to become the largest patient movement in the world. A movement of patients who give to others just by taking their medicine as prescribed. And most importantly, a movement of patients who share their experiences and perspectives with regard to their medicines, so that this knowledge can be used to improve treatments. The ambition is to make you proud of taking your medicine the right way – to make you a real DrugStar.
It’s very simple to use DrugStars, and if you have any problems, don’t hesitate to ask by using contacts provided on their website.
How to start
First, you download the app and login with your Facebook account or create your very own DrugStars account.
Then, you register your medicine, vitamins etc.
You will receive reminders based on the information that you registered with your medication, and every time you receive a reminder, you will also be able to collect a ‘star’. You can also earn stars by reviewing your medicine or by referring other people to join DrugStars.
When you have earned 50 stars, you can donate them to one of the health charities in the app. DrugStars turns the ‘stars’ into real money and donates them to the health charities approx. every 6 months.
See some of the great memories in Donations.
If you wish, you can see a more detailed guide to the DrugStars app right here: Download The DrugStars Guide right here
Oct 11, 2019
Adam Siger, Fundacja Udaru Mózgu
“In Poland, we have access to all modern methods of treating stroke patients. We have a large network of stroke wards, where patients usually arrive quite quickly after the onset of a stroke. We are able to treat stroke in a modern way, but we have a problem all the time with proper care for the patient who usually leaves the stroke unit after 8 or 10 days” says Adam Siger, the President of the Polish stroke support organisation Fundacja Udaru Mózgu and former Board member of SAFE.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
AS: Access to specialist long-term rehabilitation is the biggest problem for people after a stroke, as well as their families and caregivers. we don’t have enough neurological rehabilitation departments. We don’t have enough caring and healing centers where we could accommodate the most difficult patients. We do not have a comprehensive support system for patients and their caregivers after leaving the hospital. Patients with aphasia as well as patients in the coma and in the persistent vegative state (PVS) are not usually admitted to neuro rehabilitation units. Similar problem applies to patients with swallowing disorders and nutrition by intranasal probes. Patients in such post-stroke problems will be left without proper support. A very big problem is access to complete rehabilitation after a stroke for the inhabitants of villages and small towns.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AS: Since the beginning of our activity, our foundation has been undertaking a number of activities to increase the availability of modern rehabilitation and support for carers. We already have some small successes in this area but there is still a lot to do. We need to create a stroke national program for prophylaxis, treatment and rehabilitation. We believe that it is possible to consolidate the activities of many medical environments to create such a program. Every year, around 80,000 in Poland suffer from stroke. Stroke is a serious health problem but also social and economic. We hope that in the near future we will be able to interest politicians and decision-makers to create a working group in parliament that will deal with all problems related to stroke. We would like to interest politicians and decision-makers at the central and local levels to improve the situation of people after stroke
SAFE: Please tell us more about your organisation.
AS: Fundacja Udaru Mózgu is a non-governmental organization whose main goal is to help stroke patients, their families and carers. Our mission is all activities in the prevention, diagnosis and treatment of stroke. The Foundation’s activities also include prevention. Our publications on stroke, its effects and prevention are a valuable source of knowledge for the general public. We create social campaigns aimed at realizing the threat that this disease carries, using modern mass media.
We provide direct material and immaterial help to patients after stroke, their family and people with other neurological diseases. We run the only helpline in Poland for stroke patients and their carers.
We publish the Stroke Magazine “1 in 6” in Poland which we distribute for free at neurological departments and neurological rehabilitation throughout the country for free. The magazine is available for free on the Internet too www.magazynudarowy.pl
Thanks to the constant contact with patients from all over Poland, we know how important support and assistance is for people after a stroke.
