Berlin eyes ‘stroke guides’ for holistic post-stroke support

The German government is eyeing the introduction of “stroke guides” into public healthcare systems, which patients’ representatives say would help make post-stroke care more holistic and support patients beyond purely medical services.

Almost 270,000 people in Germany suffer from stroke each year, according to insurers’ data, and is the largest single cause of acquired disability, with 60% of survivors still reliant on therapy, assistive devices, or care.

But despite this prevalence, the support on offer for stroke survivors is too narrowly focused on healthcare services, according to Michael Brinkmeier, chairman of the German Stroke Support Foundation.

“It is not just about the healthcare system,” he explained in an interview with Euractiv. “It is also about the social rupture one faces.”

According to Brinkmeier, patients in Germany are relatively well cared for in medical terms in the days and weeks after a stroke, including the treatment in hospital and, following that, in a rehabilitation clinic.

But once a patient is dismissed and sent back home, they are often left to navigate their, often complex, post-stroke journey on their own, the expert warned.

“At this point, you can count yourself lucky if your GP has even been informed that one of their patients suffered a stroke,” he said.

Social, psychological challenges

In practice, this not only means that patients have to navigate different specialists to work on symptoms like spasticity or speech impairments, but also that they have no support in dealing with the social and psychological impact of such a life-changing event.

For example, by not being able to partake in many social activities, survivors “lose social contacts”, Brinkmeier said.

And without proper psychological support, he added, many fall back into those harmful habits that propagated the stroke in the first place, such as smoking. This, in turn, increases the risk of a second stroke and creates additional costs to the health system.

Asked by Euractiv about what support is on offer for stroke survivors, a health ministry spokesperson focused on patients’ right to appropriate medical treatment and cures, including in the long term, if need be. They also stressed that the government has, “for many years”, supported data collection on strokes and stroke recovery.

Beyond that, no specific programmes for life after stroke exist from the government’s side.

But in the view of Brinkmeier, the key to improving the situation is to bridge the gap between the health system, the social system, and other support mechanisms.

Establishing “stroke guides”

To this end, the foundation has been promoting the concept of “stroke guides” – experts paired with stroke survivors to accompany them from their hospital stay onwards and throughout their post-stroke journey.

Stroke guides “look after the survivor according to their individual and specific needs,” explained Brinkmeier. “For example, if someone smokes, they help them find a smoking cessation programme, and check in on how that is going.”

Those working as guides should also be regionally rooted, he added, so that they know which local doctors and other institutions are best sought out.

Currently, the stroke guides are already being rolled out in many regions of Germany through pilot projects or private initiatives, including on the part of the Stroke Support Foundation, but are not part of public healthcare.

Government plans

According to the ministry spokesperson, the government is currently funding pilot projects on stroke, including ones that look into “alternative forms of care”, such as guides.

“The project results are systematically analysed by the responsible innovation committee, which makes a recommendation on the transfer or utilisation of the results to improve care,” she added.

The concept of patient guides also features in the current government’s coalition agreement, which states that “for successful pilot projects, such as the patient guides, we will define a pathway as to how these can be transferred to standard care”.

For Brinkmeier, establishing stroke guides as part of standard health care would be the most effective step to take towards better and more holistic support for stroke survivors.

At the same time, he stressed the importance of stroke prevention: “After all, the best stroke is the one that does not happen in the first place.”

[Edited by Nathalie Weatherald]

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