SAFE represented stroke patient voice at ESOC 2019

May 25, 2019

The 5th European Stroke Organisation Conference (ESOC), took place in Milan, Italy, from 22 to 24 May 2019.

ESOC 2019 was attended by more than 5,600 participants from all over the world. Stroke Alliance for Europe had a stand at this important event, providing information on the latest stroke advocacy activities.

One of the highlights of ESOC 2019 was the constitution of the Steering Committee for the “Stroke Action Plan for Europe 2018-2030” implementation, in which SAFE will take active participation, representing the voice of stroke patients from 33 European countries.
SAFE promoted the Stroke Action Plan on its stand, now available in additional seven European languages (French, Polish, Spanish, Portuguese, Russian, Ukrainian and Greek) with many more translations to come. The Stroke Action Plan’s translation will increase its reach throughout Europe and significantly help stroke support organisations in with their further advocacy work.

Two of the SAFE Board members, Anita Arsovska from North Macedonia and Hariklia Proios from Greece held important lectures as part of ESOC Scientific Programme. SAFE’s President, Jon Barrick, co-chaired a session on the last days of the congress, covering the topic of the burden of stroke in Europe and the Life After Stroke issues.

Apart from the Board members, other SAFE organisations’ members from Turkey, Italy, Croatia, Hungary, Portugal and many other countries took active part in the ESOC 2019 programme within their fields of expertise.

Video credits: Turkish Stroke Support Organisation BEYINDER.

Stroke Survivors’ needs in Croatia: The lack of logistical coordination within the system itself

May 24, 2019

“For stroke survivors  the real battle begins after they have been discharged from the hospital. The bio-psycho-social burden  on any society (family unit), if they are not properly prepared or organized, can very quickly become devastating” said Hrvoje Jurlina, M.D., stroke survivor from Croatian Stroke Society.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?

HJ: As in every country the healthcare system has its flaws. The root to a great percentage of these  imperfections  within the healthcare system lies in the lack of logistical coordination within the system itself.  For example: ”If a bus driver does not know his own bus root how can anyone on board the bus be expected to arrive successfully to their desired destination?” (The Bus symbolizes Stroke, the bus driver represents the healthcare system, the bus route substitute as ‘Life after Stroke’, the bus stops depict the specific levels of care, therapy, and rehabilitation the stroke survivor must go through, and the desired destination of the stroke survivor within that bus route represents  the desired level of recovery from the burden of stroke.) This is very much so the situation in many healthcare systems in regards to stroke patients. Once the stroke survivor is released from the hospital , the stroke survivor and their primary caregiver (”get on that bus”) are given very little if any information regarding post hospital recovery procedures and care options. The information given is most often very superficial and lacks a realistic picture of what awaits the stroke survivor and their primary caregiver in the immediate and distant future.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?

HJ: The need for some form of standardized criteria regarding recovery,  care options as well as an insight into patient rights for stroke survivors and their primary caregivers  is thoroughly needed. ‘ The bus route must be laid out, all of the bus stops must be clearly marked so that the stroke survivor as well as their primary caregiver may successfully navigate and reach their desired destination, which is the recovery from the burden of stroke. To achieve these goals a firm foundation must be put in place in which an alliance of all parties involved in the stroke survivors rehabilitation and recovery can come together in order to maximize a successful post stroke outcome. Without complete collaboration and cooperation (within all branches of health care, social services, patient advocate groups, and the stroke survivors primary caregiver) no true recovery from the burden of stroke can fully be achieved. This continuous burden not only inhibits all aspects of the stroke survivors life but directly influences the lives of their family  members and society as a whole.

SAFE: Please tell us more about your organisation.

HJ: Croatian Stroke Society (Hrvatsko društvo za prevenciju moždanog udara) was founded in 1997 with the aim to prevent stroke among persons at risk and stroke survivors, and to improve diagnostics, treatment and rehabilitation, based on the latest scientific knowledge. Raising the stroke awareness in Croatia, which will lead to the reduction of stroke by creating a healthier and more conscious society, is our vision. The Croatian Stroke Society is divided into two branches which are collaborating – stroke survivors section and professional/scientific section.  Our activities are focused at educating the population, stroke survivors, caregivers and the medical staff about stroke to improve diagnosis, treatment and rehabilitation. The stroke survivors section members are primarily involved on raising the stoke awareness among the population including stroke survivors and their family and caregivers organizing public campaigns, patient groups, lectures with stroke risk assessments, activities on social media channels, etc. The professional/scientific section members are primarily involved on raising the stroke awareness and education of health professionals as well as providing the medical scientific background to the public and stroke survivors.  Croatian Stroke Society is proud member of the Stroke Alliance for Europe, European Stroke Organization and Central and Eastern European Stroke Society.

Stroke survivors to look past their own countries and make stroke recognised by EU institutions

May 18, 2019

“Having attended the SAFE Regional Conference in Paris, I was struck by the need for us as stroke survivors to look past our own borders and countries and to focus on what can be done to ensure that the EU Institutions recognise the burden of stroke across Europe on survivors, their carers and families, and the need for stoke to be recognised as its own incredibly important entity, rather than diluting it in the wider classification of cardiovascular diseases” said Martin Quinn, stroke survivor from Ireland.

We at SAFE are thankful for Martin’s feedback and subsequent engagement after the SAFE Regional Conference in Paris. Sharing his views and actions in the blog post below, we hope to inspire other SAFE members from across Europe, just ahead of the upcoming EU elections, to be held between 23 and 26 May 2019.

“My thoughts after the Paris Conference were filled on what I could do as a stroke survivor to further this discussion and the recognition required on the burden of stroke across Europe. I felt that it was important that I should play my part as a stroke survivor from Tipperary in Ireland and that perhaps I could influence the process in some way and be a voice for those survivors that had no voice in the ongoing battle against stroke.

I am the type of person with the attitude of Benjamin Franklin who once said, “Don’t put off until tomorrow what you can do today”, so immediately on returning home from Paris I put pen to paper and wrote to my local media about my attendance at the Conference; on the implementation of the Stroke Action Plan for Europe, on the event held under the patronage of the Romanian Presidency of the Council of the European Union on the role of policy in tackling stroke which took place in Brussels, and on ongoing stroke support organisation activity across Europe.

The local media immediately picked up on the story and ran articles in the local newspapers and I was interviewed about the Conference on two local radio stations. There has been much positive reaction to this story and it has been widely shared amongst stroke survivors and their organisations.

With impending European Elections I wanted also to get this message out to outgoing Irish Members of the European Parliament and to candidates contesting the elections for the first time. So I again put pen to paper and wrote to every Irish MEP and to first time candidates that I could get contact details for. In my letter to them I informed them of my attendance at the Paris Conference and of SAFE’s goal to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation. I went on to refer to the Brussels event, which was held under the patronage of the Romanian Presidency of the Council of the European Union, and I attached the report from the event for their consideration. In my letter I said that for me as a stroke survivor it was very important to hear of patient representatives and clinical experts calling on the EU Institutions to recognise the burden of stroke as its own incredibly important entity, rather than diluting it in the wider classification of cardiovascular diseases, and on the request to the EU to facilitate discussions between its Member States on the implementation of the Stroke Action Plan for Europe. I concluded by saying that joining forces with EU policy-makers to address the burden of stroke that stroke survivors, their families and the overall society are currently facing is essential, as is the support of our MEP’s in the implementation of the Stroke Action Plan for Europe.

As luck would have it on the day of one of my interviews on my local radio station, who should I meet in the studio corridor only Deirdre Clune, Fine Gael MEP for Ireland South (Member of EPP Group in Parliament). I was previously acquainted with Ms. Clune so having exchanged pleasantries I then had a brief word with her about my correspondence to her on the Stroke Action Plan for Europe and I then headed into studio for my own interview. Later on however I had a further opportunity to meet Ms. Clune and to speak to her in more detail on the matter. She thanked me for my correspondence and for sending her a copy of the Brussels report and she committed if elected to following through on the proposals and objectives as outlined in the report to further the implementation of the Stroke Action Plan for Europe.

Further support for the implementation of the Stroke Action Plan for Europe has been forthcoming to me in response to my letter to candidates from Ireland South Fianna Fáil candidate Billy Kelleher (ALDE Group in Parliament), from Ireland South Labour candidate Sheila Nunan (PES Group in Parliament) and from Dublin Independent Socialist candidate Clare Daly.

Sheila Nunan submitted a detailed response stating that she would call for the full implementation of the UN Convention on the Rights of Persons with Disabilities, including stroke survivors at EU level and will work with disability organisations and organisations like SAFE & IHF to achieve this. She added that she will promote and support new measures to ensure that all stroke survivors have access to inclusive education, with personalised supports, and an inclusive workplace.

The Ireland South Green Party candidate, Grace O’Sullivan (Greens/EFA Group in Parliament), said that she would keep my letter and report attachment on file for review should she be successful in getting elected.

I eagerly await responses from the others!” concluded Mr. Quinn.

<Featured Photo: Martin Quinn meets Ms. Deirdre Clune; Credits: Martin Quinn>

Stroke Survivors’ needs in the Netherlands: Only 1 out of 10 stroke survivors eligible for medical specialized rehabilitation

May 17, 2019

“It is wonderful that more and more people survive a stroke, but that only about 10 percent of those survivors end up in medical specialist rehabilitation is at least worrying. And this low number applies to the entire group with brain injury, so also, for example, to people with injuries due to an accident” says Monique Lindhout, SAFE Board Secretary and Director of the Hersenletsel.nl.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?

ML: The extent to which a stroke survivor can participate in society is largely dependent on the degree to which they are rehabilitated. In The Netherlands only 1 out of 10 stroke survivors is eligible for medical specialized rehabilitation.

It is good that a diagnosis is made quickly in hospital and treatment is started quickly. In addition, there is pressure from insurers to keep the treatment as short as possible. In practice, this means that triage also takes place quickly – often too quickly. The triage determines what the rehabilitation process will look like. Can a patient handle the intensive treatment in a rehabilitation institution, is geriatric rehabilitation in a nursing home appropriate? Or can someone go home immediately?

Far too often, people, young and old, are sent home under the motto “too light, no need for rehabilitation.” And there is another group: the people who are sent to the nursing home under the motto “damage done too serious, non-recoverable.” This too is still too common.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?

ML: We truly believe that ‘a life saved needs also to be lived’ and that it is us, as a society, as a patient organisation, as healthcare professionals, as friends and relatives of stroke survivors, that will have to make this possible for all stroke survivors. We therefore focus on 4 different aspects:

– Involving family in the recovery process

Involving family gives a win-win-win situation:

• The patient wins: greater chance of recovery and of maintaining a network in the chronic phase

• The loved ones win: they help, grow with and grow towards good “dealing with” in the chronic phase. An active network prevents overloading of one of the primary caregivers.

• The professionals win: better results in less time

• Society wins: less burden of care and costs in the chronic phase.

– Training stroke survivors to become ‘ambassadors’ We developed a course ‘Ambassador’ in which stroke suvivors learn to use their own story ànd their own strength to support others. Over 200 stroke survivors are now successfully active in this field in a position that fits their interest, passion, competencies, available time and energy.

– Developing technical tools (apps, e-health) to enable people to work on their own rehabilitation at home

– Use an extensive media campaign on this subject

SAFE: Please tell us more about your organisation.

ML: Hersenletsel.nl is a patient association for people with non-congenital brain injury and their loved ones and focuses on the lifelong consequences of (non-congenital) brain injury. It stands for promoting self-reliance and social participation in a way that does justice to both the possibilities and limitations of people with brain injuries. The pillars of the association are contact with fellow sufferers, information provision and advocacy. Hersenletsel.nl is the leading patient association for people with non-congenital brain injury and their loved ones in the Netherlands. The association wants to achieve adequate care, guidance, facilities and support structures for both people with a non-congenital brain injury and their loved ones. The association offers added value for its individual members through suitable and usable products and services.

The association can be found in every region in the Netherlands as an active patient association for people with brain injuries and those close to them. The association is the designated discussion partner for stakeholders at international, national, provincial, regional and local level. The association is also the initiator and participant in NAH centers and aphasia centers and has an active role in monitoring the quality of these centers from a patient perspective. The association is the designated participant in the development of care standards and quality criteria from a patient perspective for the care of those affected with brain injury.