Lack of basic data clouds action on post-stroke care

 Well of course, there is NOTHING ON STROKE PROTOCOLS FOR RECOVERY! And survivors don't want 'care'; they want recovery! Or are you that blitheringly stupid?

Lack of basic data clouds action on post-stroke care

European countries are miles away from comprehensive post-stroke care plans that look beyond healthcare and are failing to collect basic data on the lives of stroke patients, health stakeholders have warned.

More than 750,000 people in Europe suffer a stroke every year – a number that is projected to increase by 35% between 2017 and 2050.

A stroke happens when the blood supply to the brain is blocked, damaging brain tissue. This can have long-lasting effects on a person’s health and well-being, such as a disability due to brain damage. It also heightens the risk of a second stroke or another health emergency.

That leads to stroke having an enormous human and economic cost, particularly due to the complex situation stroke survivors find themselves in after leaving the hospital. Survivors are most often left to themselves as most European countries lack a proper plan for post-stroke care.

Ideally, such a plan would cover an extensive range of support, such as psychological support, occupational therapy, social care, housing, and getting back to work.

Even though some countries have taken steps, it is difficult to judge the quality of the plans that do exist, according to Hanne Christensen, professor of neurology at the University of Copenhagen and chair of the Stroke Action Plan for Europe.

The plan is an initiative launched in 2018 by the Stroke Alliance for Europe (SAFE) and the European Stroke Organisation (ESO), which aims to encourage all countries to have a fully comprehensive funded national stroke plan.

“I don’t think there is any country where stroke victims and their carers don’t say that the life after stroke is by far the biggest problem,” Christensen said.

While there is still much to be desired in terms of care plans for stroke, Christensen said one of the most important arguments for action is that it truly pays off to improve care to make sure stroke survivors get the best outcome, limit their level of disability, and remain as active as possible.

The benefit of good post-stroke care plans

Without holistic post-stroke care plans, stroke survivors are mostly left to navigate a complex system all by themselves.

In Germany, some steps are being taken in the right direction as authorities are looking into making holistic “stroke guides.” The goal is to move away from the narrow focus on healthcare in post-stroke care, which dominates in most countries and ignores the complexity of life after a stroke.

“It is not just about the healthcare system,” Michael Brinkmeier, chairman of the German Stroke Support Foundation, explained in an interview with Euractiv. “It is also about the social rupture one faces.”

These challenges vary greatly from person to person and “depend on their condition and how well they’ve been treated”, said Christensen.

In many cases, the survivors’ families have to look after them at home or the survivors, regardless of their age, are sent to a care home for elderly people, which lacks staff trained to care for stroke survivors.

Having to send their family members to care homes leaves families “outraged”, Françoise Benon, president of the patient organisation Fonds de dotation France AVC, told Euractiv.

However, when the care is administered at home, it has a big impact on the carer’s private and professional life. This work often ends up being the responsibility of women and leads to an added loss of contribution to society, Christensen said.

Poor data clouds importance of action

One big Europe-wide problem standing in the way of better stroke care is a lack of even the most basic data.

According to Christensen, some countries do not even have an accurate number of how many people suffer a stroke every year, their gender, or how many strokes are fatal.

When it comes to life after a stroke, it is a question of collecting “the best possible in the existing world” by asking whether countries have a post-stroke care programme, and if they do, what it includes and who has access to it, she explained.

“Even on that level, despite the complete lack of precision in those questions, only very few countries can answer. The truth is, there is no data,” Christensen added.

To turn this around, stroke needs to get more attention. This is slowly happening, as ESO and SAFE’s Stroke Action Plan for Europe are informing countries about how to shape national stroke plans.

On the EU-level, the EU Non-communicable Diseases (NCD) initiative, presented in 2021, included a goal to improve “integrated care and rehab pathways for stroke patients”, informed by the Stroke Action Plan for Europe.

Since then, a wide range of companies and organisations in health have been calling for a strategy on cardiovascular diseases similar to Europe’s Beating Cancer Plan, leading to hope that conditions for stroke patients could soon improve across the EU.

[Edited by Zoran Radosavljevic]