Experts, associations urge ‘restoration of dignity’ for post-stroke patients

Both experts and patient associations in Spain praise the quality of treatments provided by the public health system but demand greater attention and resources put towards the difficulties posed by the multi-sectoral management required after discharge.

“Once you have a stroke, in Spain the public health system works quite well, with a well-implemented ‘stroke code’, although the post-stroke follow-up still poses challenges,” Ana Cabellos, president of the Spanish Brain Damage Federation (FEDACE), told Euractiv’s partner EFE in an interview.

Cerebrovascular Accident (CVA) or stroke is a serious medical condition that happens when blood flow to a part of the brain is interrupted or reduced, depriving the brain tissue of oxygen and essential nutrients, Clínica Universidad de Navarra, one of Spain’s pioneer centres, explains.

Although the public health system for stroke patients in Spain works well, “the problem comes when they are discharged. [Discharges] occur very soon, very shortly after the person is stabilised,” Cabellos explained.

Additionally, she pointed out that “at the time of discharge, patients shouldn’t be left alone in the process of searching public [or private] centres to start their rehabilitation process,” adding that there are few post-stroke rehabilitation centres in the country.

“The first year after a stroke is vital, and will define what type of [quality of] life that person will have,” the president of FEDACE recalled.

According to data from the Spanish Society of Neurology (SEN), in Spain, between 110,000 and 120,000 people per year suffer a stroke, of which 50% are either fatal or leave life-changing injuries.

Varying access to care

Post-stroke care differs also widely across the country, Cabellos said.

“The care of patients in the subacute phase [days to months after the stroke] is very different in the Autonomous Communities [regions],” she explained.

“In Navarra [north], for example, care is much more structured and there is a socio-health relationship from the moment you leave the hospital until you are in the chronic phase, but, unfortunately, in other places, it depends on where you were born; things can be very different in other regions such as Extremadura [centre-west] or Castilla la Mancha [centre-south], to name just a few,” Cabellos stressed.

“Every Autonomous Community has its own working programme and its action plan, and depending on where you were born you will receive more or less attention,” Cabello emphasised.

Restoration of dignity to “post-stroke” patients

Alongside initial treatment, “restoring dignity to people with disabilities [after a stroke]” is key, Cabello said.

Stroke is one of the causes of Acquired Brain Injury, a brain injury that can lead to life-long consequences. It is the first cause of disability in Spain, and the first cause of death among women, according to Cabellos.

“We work so that Acquired Brain Injury is understood as a unique disability – with its specific characteristics,” Cabellos said.

FEDACE, Cabellos explained, calls for “a national strategy for the care of brain damage that begins from the moment of the CVA when the patient is admitted to hospital, which activates all the action protocols that have to do with the care of these patients.”

The AIDA association, a model of good practices in Spain

Among the examples of good practice and excellence in the monitoring and care of stroke victims in Spain is the Ictus Association of Aragon (AIDA), whose president, Miguel Lierta, a stroke survivor, urged national and regional health authorities to implement multidisciplinary management to tackle the challenges.

AIDA has a large team of doctors, physiotherapists, speech therapists and psychologists, among other professionals who care for those who have suffered a stroke, have been discharged, and now want to “get back to life”, or at least normalise their lives as much as possible, Lierta told EuroEFE.

“We carry out a global assessment of the patient. Our social workers also analyse how their family environment is. For example, if it is a dysfunctional family, those affected take much longer to rehabilitate or, unfortunately, do not rehabilitate at all. They are then seen by the rehabilitation doctor, who examines the physical side. The person’s basic activities of daily living are examined for occupational therapy, and then they are analysed by a neuropsychologist to deal with the purely cognitive aspects,” Lierta says.

Once all this data has been compiled, the AIDA team establishes a rehabilitation plan adapted to the specific profile of each person.

“It is very important that, once the patient’s pace of life has been broken, they can recover – at least partially – the usual routines. For example, if before the stroke he/she used to practice sport and now cannot do it, we must try to create the conditions for him/her to have complementary alternatives,” he explained.

[Edited by Giedrė Peseckytė/Nathalie Weatherald]

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