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>
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.
May 15, 2019
Parliamentary elections took place in Finland in April, and the new government programme is currently being drawn up. The Finnish Brain Association urges Finland’s new decision-makers to remedy the flagrant inequality in stroke rehabilitation. In Finland, access to rehabilitation is arbitrary and depends on both the affected person’s domicile and age.
In the country’s hospital districts, at best more than 40 per cent of stroke victims are admitted to multiprofessional rehabilitation. This is in line with national recommendations. In some hospital districts, however, multiprofessional 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 victims are referred to multiprofessional 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.
The Finnish Brain Association reminds the new decision-makers that follow-up care for stroke victims 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.
The Finnish Brain Association demands an end to this kind of age discrimination and reminds us of studies that indicate that the rehabilitation of elderly stroke patients in particular is worthwhile. The association points 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.
Inadequate or inefficient rehabilitation leads to a weaker state of health and impaired functional ability and quality of life for the patients, while also increasing their need for assistance and services. Stroke is the most costly arterial disease. Each year, EUR 450 million is spent on direct costs and more than EUR 800 million on indirect costs. This expenditure could be lowered by tens and even hundreds of millions of euros, if rehabilitation were targeted correctly.
Insufficient support measures for those affected by aphasia
In Finland, there are approximately 20,000 people who suffer from aphasia following a stroke. They are also in a difficult position, as language disorders are not recognised according to the Finnish Brain Association, and the availability of support measures, such as interpretation services for people with a speech impairment, is insufficient.
Therefore, the Finnish Brain Association demands that people with a speech impairment also be provided with immediate, appropriate therapy and the possibility to express themselves. Society and public service providers have not sufficiently taken into account the possibilities of people with a speech impairment to participate in decisions that concern them. People with impaired speech are not able to act as active citizens, nor do they have the possibility to communicate in an emergency situation (112), for example.
The Finnish Brain Association bases its demands on, among other things, the Nordic Aphasia Association’s principles of aphasia rehabilitation, which, according to the Finnish Brain Association, are a prerequisite for achieving fairness and equality in communication.
May 14, 2019
The European Stroke Awareness Day is this year being marked on May 14, the second Tuesday in May, and SAFE’s main campaigning theme in 2019 is ‘Life After Stroke’. However, many of the SAFE stroke support organisations organised events in a way that made May a stroke awareness month.
The issues facing stroke survivors in the long term have historically been generally ignored. The voices of stroke survivors, as individuals and, vitally, through their support organisations are required to improve life after stroke care provision.
Our member organisations from across Europe organised a number of activities for raising awareness of stroke and these photos below are just a small fraction of a tremendous work they have done.
Around a third of stroke survivors are disabled, have poor post-stroke cognitive ability and poor mental health. Surveys show that communication, social relationships, loneliness, incontinence, fatigue and finance needs especially are unmet, and social integration is missing. There is a strong need for personal care plans after rehabilitation ends, and for coordinated support.
We invite you to join our campaign, follow us on social media (Facebook and Twitter) and support stroke survivors and their carers by raising awareness of their needs.
May 13, 2019
Stroke Alliance for Europe (SAFE) – Director/General Manager
Homebased with travel throughout Europe – circa £50,000
This role will be delivered under contract to a self-employed individual with a contract for 24 months, subject to review at 6 months and 18 months
Stroke Alliance for Europe (SAFE)
Stroke Alliance for Europe is a coalition of 34 stroke patient organisations from 30 European countries, fighting together against stroke in Europe. SAFE’s vision is to work towards greatly decreasing the number of strokes in Europe and that all who are touched by stroke get the help and support they need.
SAFE therefore engages in activities such as campaigning, education, encouraging research, and growing stroke support organisations which contribute to the advancement of stroke prevention and the improvement of the quality of life of stroke survivors, their families and carers.
The Role
SAFE has made excellent progress over the last 12 years establishing a network of Stroke Support Organisations across Europe each operating at a local country level.
They are now looking for a Director/General Manager to oversee the work of SAFE and to support and enable a new and growing cohort of stroke support organisations, patient and carer advocates across Europe.
SAFE also has close relations with the European professional medics body, the European Stroke Organisation and is promoting the Stroke Action Plan for Europe to the EU and European countries. They are also members of EFNA and the EPF and this role will be involved in diplomacy with these and other pan European groups.
SAFE receives sponsorship from commercial organisations which needs effective planning and diplomacy to achieve, and effective management to deliver outcomes.
The development of new projects and promotion and marketing of existing projects are part of the overall role..
This role is the most senior of the paid roles in SAFE and as such is responsible for the effective management of SAFE and its workforce, and for the delivery of objectives determined with the Board.
Key tasks of role:
-Work closely with the President of the Board, with regard to offering leadership and support to the Board, staff and SAFE member organisations.
-To manage staff, contracted suppliers, and SAFE resources to ensure achievement of SAFE’s goals and sustainability.
-Work with external contacts throughout Europe and beyond to enable growth of SAFE and of Stroke Support Organisations in Europe
-Research and scope out requirements of proposed projects
-Report to and deliver the requirements of the SAFE Board, writing strategy, reports and other board material as required.
-Oversee the SSOFT tool, and manage all agencies/people ensuring the ongoing functionality of each module, ensuring co-ordination of different strands of activity to achieve a high quality, sustainable, usable product.
-Have overall responsibility for managing the budget, legal contracts and other financial elements of SAFE.
-Ensure all relevant strategic communication activity is delivered, and that digital platforms are utilised.
-Have overall responsibility to the Board for the delivery and expansion of income generation, and management of persons or agencies involved in these processes.
-Ensure Secretariat activity is supported and all meetings and business is delivered in timely and effective ways.
-Liaise with all relevant stakeholders , particularly the SAFE Board, throughout the year to ensure effective and timely communication
-Take primary responsibility with the Board secretary and secretariat for the creation and establishment of agendas for meetings, conferences and policy activity.
-Work closely with the Communications and Advocacy Manager to ensure maximum press and publicity
You can access the full description on the link provided below.
We encourage all suitable candidates to apply.
https://eurobrussels.com/job_display/162740/Director_General_Manager_SAFE_Stroke_Alliance_for_Europe_Homebased_Europe_Multiple_Countries
