SAFE’s call to action to EU policy makers
The inequalities in stroke risk and stroke provision across Europe revealed in this report should be of great concern to European policy makers, especially as we predict a 34% rise in the number of people having strokes by 2035. SAFE wants a Europe where everyone has the opportunity to prevent a stroke, and those who do have a stroke get treated as quickly as possible in a stroke unit; get the assessment and rehabilitation they need to maximise their recovery; and get the long term support they need to regain as much independence as possible. And we are concerned that the lack of unified data on stroke events and outcomes in Europe is a barrier to comparing stroke care both within and between different healthcare systems and, therefore, to improving stroke care.
SAFE believes that each EU member state should have a national stroke strategy actively supported and sponsored by Government that covers the whole stroke pathway to include awareness, prevention, diagnosis, treatment, transfer of care, specialist rehabilitation and reassessment, long-term care and support, social integration and participation in community life and end-of-life care. Representatives from the wide range of professionals who support people with stroke, people who have had a stroke, carers and voluntary associations should all be involved in creating such strategies.
Therefore, sAFe calls on EU policy-makers (Commission, Parliament, Council) to:
- Facilitate coordinated, Europe-wide data collection. In particular, the European Commission and the Joint Research Centre should support and promote the use of a robust Europe-wide stroke register including instruments to assess needs for prevention and care as well as the quality of care along the whole stroke pathway.
- Incorporate the stroke indicators used in this report (e.g. blood pressure management, door-to-needle time, coordinated discharge and post-discharge rehabilitation assessment) in the EU’s work on the evaluation of the performance of health systems, as they are good measures to assess the efficiency of care organisation and delivery in member states.
- Support, together with Member States, a Joint Action on stroke, in the framework of the EU Health Programme. The Joint Action should focus on addressing the following topics: 1) data collection, 2) prevention, 3) promotion and implementation of national stroke strategies, and 4) performance assessment. Stroke Support Organisations (SSOs) should be actively involved in the Joint Action, and their crucial role throughout the stroke pathway, and in policy formation, should be enshrined in the national stroke strategies.
- Support research into patient-reported experience, outcome measures and quality of life across Europe. This is linked to the need for more research on long-term management and support so that best practice and the effectiveness and cost-effectiveness of different models can be identified. SAFE believes strongly that patients and patient organisations/ SSOs should be actively involved in these studies as participants and co-researchers and that building the capacity for their participation is also vital.