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Prevent, treat and support: An EU election manifesto for stroke survivors
The Stroke Alliance for Europe (SAFE) and the European Stroke Organisation (ESO) today launch their joint EU MEP Election Manifesto 2024. For the elections in June we are asking MEP candidates to support improving health across the EU with a focus on improving prevention, care and support of those affected by stroke across Europe.
Every year, nearly 1.5 million people suffer a stroke in 32 European countries1. Stroke can be devastating – leading to death or life-long disability2, shattering the lives of victims and their loved ones. Those who survive will join the more than 9 million European stroke survivors who live with long term health, social, and financial impacts3.
The EU Non-Communicable Disease Initiative, Healthier Together, launched by the European Commission in 2022, provides opportunities for policy action that both EU-level and national policymakers should build on. We call upon all EU level policymakers, to prioritise stroke in health policies, to support member states to develop national stroke plans and lead research into the under-examined areas of stroke.
Following the principles of the Stroke Action Plan for Europe, SAFE and ESO are calling for the implementation of the following policy proposals:
- Prior to a stroke
- Primary prevention and risk factor control
- Implement legislation for public health interventions
- Implement risk factor screening and treatment programmes
- Amidst the stroke
- Quality of care and stroke management
- Ensure equal access to acute stroke care
- Establish a quality improvement system for stroke services
- Life after stroke
- Prevent further stroke and take care of those who had one
- Implement post-rehabilitation personal care plans that offer non-medical support
- Provide sufficient secondary prevention services
- Guarantee equitable access to rehabilitation prior and post discharge
- Develop a European framework of reference for stroke care quality
- Empower a dignified life after stroke
- Understanding stroke
- Provide sufficient research funding
- Improve stroke services with better data
- Encourage research into under-examined areas of stroke
Click here for the full manifesto:
References:
- At what cost: The economic impact of stroke in Europe. University of Oxford for the Stroke Alliance for Europe (SAFE).
- Sudharsanan, N., Deshmukh, M., & Kalkonde, Y. (2019). Direct estimates of disability-adjusted life years lost due to stroke : a cross-sectional observational study in a demographic surveillance site in rural Gadchiroli, India. BMJ open, 9(11), e028695.
https://doi.org/10.1136/bmjopen-2018-028695. - Wafa, H. A., Wolfe, C. D. A., Emmett, E., Roth, G. A., Johnson, C. O., & Wang, Y. (2020). Burden of Stroke in Europe: Thirty-Year Projections of Incidence, Prevalence, Deaths, and Disability-Adjusted Life Years. Stroke, 51(8), 2418–2427. https://doi.org/10.1161/STROKEAHA.120.029606.
The Czech Republic signs the Stroke Action Plan for Europe declaration
Congratulations!
We are very pleased to announce that the Czech Republic is the 13th country to endorse the Declaration for Action on Stroke and enact the Stroke Action Plan for Europe, bringing the country another step closer to guaranteeing the highest standard of care and support for stroke patients.
The document summarises the aims of the implementation of the Stroke Action Plan for Europe and by signing it, the governmental bodies in each country manifest their commitment to
- acknowledge that cerebrovascular diseases, including stroke, are among the major causes of premature death long term disability, and cognitive decline
in the adult population of Europe, and that many strokes are preventable and treatable with evidence-based and cost-effective strategies ; - support the Stroke Action Plan for Europe with the four overarching targets for 2030: (1) to reduce the absolute number of strokes in Europe by 10%, (2) to
treat 90% or more of all patients with stroke in Europe in a dedicated stroke unit as the first level of care, (3) to have national plans for stroke
encompassing the entire chain of care, (4) to fully implement national strategies for multisector public health interventions - align with the WHO Global Action Plan for Prevention and Control of Noncommunicable Diseases 2013-2020 that aims for a 25% relative reduction in
premature mortality from cardiovascular diseases, cancer, diabetes, or chronic respiratory diseases by 2025.
Fint out more about the Declaration on this page.
2023 SAP-E Annual Status Report
The 2023 Status Report emphasizing this year’s Stroke Action Plan-Europe achievements by the European Stroke Organisation (ESO) and Stroke Alliance for Europe (SAFE) is now available.
With the participation of 42 delegates representing 34 countries, the first on-site SAP-E National Coordinators’ meeting in Riga, Estonia in March has been one of the highlights of the year. The two-day programme included sharing experiences, workshops’ discussions and introduction of the new leadership structure, including regional spokespersons.
The SAP-E Steering Committee maintains its momentum by extending the successes attained in the present year:
- Establishment of elected regional spokespersons to support National Coordinators and optimise communication
- Presentation of the Stroke Service Tracker (SST) data and regional status update by regional spokespersons during ESOC 2023
- Relaunch of the SAP-E website in May and continuous updates throughout the year to facilitate visualisation of yearly stroke data
- Publication of the lay version of the Essentials of Stroke Care listing primordial evidence-based steps during pre-hospital, hospital stroke care and life after stroke
- Signature of the SAP-E Declaration by 12 countries
- Communication campaign and joint ESO-SAFE statement on 2023 European Stroke Awareness Day
The end of 2023 will be dedicated to strengthening our presence and advocacy activities at the EU level, starting the 2022 data collection for the SST and preparing the second on-site National Coordinators meeting in January 2024.
View the full status report here.
SAP-E Highlights 2022
As we begin 2023 with enthusiasm for the work accomplished and yet to come, we would like to take the opportunity to reflect on the journey we undertook last year.
The SAP-E Steering Committee is pleased to present this round-up of all the activities that took place for SAP-E in 2022.
Read the full newsletter here and sign up here to receive future SAP-E updates right in your inbox.
Stories of Stroke by Euan Haig
Having a Stroke
Saturday, 11th July 2015
A slightly late breakfast, my right hand suddenly refused to wrap its fingers round my coffee cup. Puzzled, I stood up to go into my kitchen and found my right foot did not seem to know what to do. Alarms rang. I used my iPad to see what came up for ‘weak right hand and foot’. Loads of entries about stroke. I rang NHS 24. Maybe a minute and a half into the conversation the chap on the other end said ‘You’re having a stroke. You are going into the Edinburgh RI. An ambulance is on its way and will be with you in less than 8 minutes.”
Not a lot to say except ‘thanks’. I thought I’d better use what time was left whilst I still had mobility so I made sure my front door was unlocked and rang my son. “I don’t wish to cause undue alarm but I am having a stroke. An ambulance is on the way.”
“I’ll come now.”
“No point coming here, I’ll be in the RI by the time you arrive.”
“I’ll go there.”
I picked up my mobile phone, its charger, and some change. The ambulance arrived. I was chaired into it and had a fast drive about four miles to the RI.
I was chaired straight into ‘treatment’. By then my right side was completely paralysed below my chin. I had no facial droop. In retrospect that might have caused clinicians to underestimate severity.
The admission process was very fast; a doctor gave me four Clopidogrel tablets as I sat and then I was put in bed. I later found I had the tablets 38 minutes after I phoned NHS 24.
Thought “I am in the best place now.” I had no fear of dying. My son arrived.
A good hour passed. The paralysis and I regained full mobility. I felt fine. I was examined again. The doctor said I had had a TIA. It had felt anything but transient but was nothing I could debate. Later judgement was that the doctor had made a good call that I had had an aeschemic stroke rather than haemorrhagic stroke in which case Clopidogrel might have worsened the bleed.
I was discharged. My son took me to meet friends that afternoon. The paralysis slowly returned. My long-suffering son took me home. I ‘phoned the hospital number I’d been given and once again an ambulance appeared. By around six pm I was back in a hospital bed.
This time I felt deeply tired. There had been no pain, no headache, no muscle stiffness or aches. Just complete immobility in my right side as before.
I fell asleep thinking again I was in the best place. I did not fear it would kill me; rather I thought “It hasn’t killed me so far, so it probably wouldn’t”.
And that was the end of the first day of the rest of my life.
If You wish to Get Moving, Get Moving!
Sunday, 12th July 2015
The hospital woke me the way hospitals usually do. I realised I wasn’t dead – I hadn’t expected anything else. My left half could move but doing it all on its own meant nothing was fast or easy. Somewhere after a difficult breakfast (and a long, heavy nap) the ward nurse told me the Consultant would see me on Monday morning and that would get the recovery organisation into action. What’s the difference between God and a Consultant? God doesn’t think he’s a Consultant! (Sorry Fergus – I’m sure you have heard it!). I had another long heavy nap, and a sort of wash in bed. One-armed, one-handed, and not very conscientious.
Then began a long day. Even turning over in bed was difficult. It seemed to take at least 5 minutes of great effort. Jamming my good foot into the fence at the side of the bed gave me something to lever with or lever against, and lots of shoving with good arm, elbow and hand did the rest. And once I was over I found I was better off where I’d been. I thought I’d better make a good job of recovery.
Several long heavy naps before and after lunch. The least effort required heavy rest after. I was too knackered to be bored, I just slept. I knew I had exactly the same musculature as 24 hours before and it was not they that had to recover, it was my brain. It needed major retraining but I needed to know how to do it. I was well aware of what I could not move. Right arm and leg were utterly immobile. I could feel things with them just as before but nothing moved, nothing responded.
I did not think where in my musculature was the dividing line between mobility and its absence? I was too concerned with the very obvious fact of paralysis of my arm and leg to think about it. If I had I would have realised the right half of my torso was just as paralysed as my arm and leg. That was why it was so hard to turn over in bed. The muscles that do all the arching of the back and all the bending of the body had lost interest, but it took fully a year to work it out. Try turning over without arching your back or bending your body. There are surprises there, I think, in the mechanics of the act.
The body needs all its bits to work for good overall motion. I didn’t have that and didn’t know it’s full extent or importance. Getting it all working is another story.
Open Call for Chief Operations Officer of SAP-E
To support SAP-E and ensure its success, we are looking for a motivated stroke care professional to take on the role of Chief Operations Officer (COO) within the SAP-E Steering Committee.
The COO will have a key role in the overall success of SAP-E by supporting and driving the implementation of SAP-E within Europe.
Interested candidates can download the call document for more information.
The application deadline is 14 November.
Annual Status Report reveals big strides for stroke in 2022
The European Stroke Organisation (ESO) and Stroke Alliance for Europe (SAFE) have published the 2022 status report highlighting progress made in the past year for the SAP-E.
One major achievement in the first half of 2022 has been the inclusion of stroke as a priority in the recent EU Non-Communicable Diseases Initiative – Healthier Together. SAFE and ESO worked closely with DG Sante, the EU Commission department responsible for their policies on health and food safety, in the co-creation process for the EU NCD initiative.
With this important collaboration, the SAP-E Steering Committee continues to build on its achievements from the current year:
• Establishment of a network of over 90 National Coordinators
• Translation of the Stroke Action Plan for Europe document in 12 languages
• Launch of the Declaration for Action on Stroke, with 8 countries currently signed
• Publication of the Essentials of Stroke Care guidelines
• Development of a National Stroke Plan Template
• Initiation of the yearly Stroke Service Tracker (SST) survey among 52 countries
Project plans for the second half of 2022 include further advocacy on the EU level, continued support in preparing actionable tools for National Coordinators, consolidation and publishing of the data from the 2020 SST, and awareness campaigns for stroke physicians, stroke survivors, and the general public.
View the full media statement here.
View the full status report here.
ESO and SAFE welcome the publication of the EU Healthier Together plan
The European Commission recently launched the EU Non-Communicable Diseases Initiative – Healthier Together to reduce the burden of non-communicable diseases (NCD), including stroke, and improve health and wellbeing.
From December 2021 to May 2022, the Stroke Alliance for Europe (SAFE) and the European Stroke Organisation (ESO) worked closely together with DG Sante, the EU Commission department responsible for their policies on health and food safety, in the co-creation process for the EU NCD initiative.
This has resulted in the publication of a toolkit to guide Member states and EU policymakers towards a holistic and coordinated approach for health promotion and disease prevention, treatment and care, for diseases including stroke.
The plan covers the period from 2022-2027 and prioritises four disease groups including diabetes, cardiovascular diseases, chronic respiratory diseases, mental health and neurological disorders and health determinants for all major NCDs. Recognising its significant health burden and opportunities for improvement, we are delighted to see that stroke is specifically drawn out as a priority area under mental health and neurological disorders.
The initiative underlines the vital importance of implementing a national stroke plan, increasing public awareness, and improving screening, encompassing the entire chain of care from primary prevention to life after stroke.
This builds on the Stroke Action Plan for Europe (SAP-E), prepared by ESO and SAFE for the years 2018 to 2030.
We look forward to working with DG Sante and the European Commission in implementing the initiative to improve stroke prevention, care and life after stroke for all affected by stroke in Europe.
Harriet Priois, SAFE President added:
“We welcome this response by the European Commission to the ongoing efforts of the health community to prioritise non-communicable diseases (NCDs) on the EU agenda. We worked together with the European Stroke Organisation on a joint response to the consultation which was based on the Stroke Action Plan for Europe and the Essentials of Stroke care guideline.
We are delighted that stroke is drawn out as a priority area and that the Stroke Action Plan must be implemented across Europe. This initiative gives us a strong opportunity to raise the profile of stroke within our countries and we hope it will contribute to reducing the stroke burden, and improve the quality of life of those living with stroke in Europe.”
Download the full report
SAP-E prompts ministry to act in Denmark
Following a communication from the Danish Stroke Association, the SAP-E Steering Committee was pleased learn that the Danish Minister of Health announced that a stroke action plan will be part of the government’s political agenda for the coming years.
To quote the Minister the overarching goal will be Furthermore, The minister underlined the government’s wish to strengthen stroke prevention, emergency-treatment and using data to optimize quality and research, and to to “minimize the number of strokes by 10% by 2030”, one of the 4 overarching targets for the SAP-E initiative
According to the Danish Stroke Association, a significant factor for the success of the Danish delegation was the preparatory work that was been carried out in the scope of SAP-E efforts.
Read the full letter from Director of the Danish Stroke Association, Birgitte Forchhammer
ESO and SAFE statements in support of Ukraine
SAP-E partners ESO (European Stroke Organisation) and SAFE (Stroke Alliance for Europe) both announced their support for the nation of Ukraine and its people, as well as for a peaceful resolution to the current conflict.
Both organisations outlined the negative impact on stroke services, care, and support, and called on the support of neighbouring allies to provide continuity in stroke care however possible.
Read the statement from the ESO Executive Committee
Read the statement from SAFE President Hariklia Proios