Meeting Report: MEP Interest Group on Brain Health and Neurological Conditions

‘Invisible Issues: Bridging the gap between the perception of neurological conditions and their true impact’

November 12, 2024 | European Parliament, Brussels

On November 12, 2024, the first post-election meeting of the MEP Interest Group on Brain Health and Neurological Conditions took place, hosted by Co-Chair MEP Romana Jerković ( S&D, Croatia) at the European Parliament, Brussels.

Entitled ‘Invisible Issues: Bridging the gap between the perception of neurological conditions and their true impact’, the event’s main objective was to discuss the challenges of living with a neurological condition, the impact this has on the individuals and families affected, the impact on education and employment and to highlight where we need to do better in policy development and implementation. The event was attended by EU policymakers, healthcare professionals, representatives of patient organisations, researchers, patients and caregivers. From the weight of stigma and discrimination to the significant socioeconomic burdens, this meeting was dedicated to understanding and addressing these issues.

MEP Romana Jerković opened the meeting by outlining the severity of what Europe is facing. In particular, the fact that 1 in 3 people are affected by a neurological condition throughout their life course, noting this ratio is fast approaching 1 in 2. She stated we need to address neurology in a meaningful way, particularly given that only 1 in 5 people living with a neurological condition have access to a therapeutic intervention that satisfactorily manages their neurological conditions. It is therefore essential for EU institutions and national governments to understand the true severity of this reality.

The EU has taken recent strides to support the neurology community, including:

The European Commission launched the Healthier together – EU non-communicable diseases (NCD) initiative in December 2021 to support EU countries in identifying and implementing effective policies and actions to reduce the burden of major NCDs and improve citizens’ health and well-being. The initiative covers the 2022-2027 period and includes 5 strands on of which is focused on Mental Health and Neurological Disorders.
The European Commission funded a 24 month project which began in November 2023- the Coordination and Support Action (CSA) BrainHealth, which is the preparatory phase for a European Partnership on Brain Health. The CSA BrainHealth addresses the biomedical, economic and societal challenges of diseases and decreased mental health in Europe, aiming for collaborative solutions in prevention, diagnosis and therapies. The overarching goal is to foster and promote global brain health and enhance the well-being of individuals with mental disorders or neurological diseases.
The EU Health Policy Platform (EUHPP) Thematic Network: “Towards an EU Coordination Plan for the Brain.”
All EU countries supported the adoption of the WHO’s (World Health Organisation’s) 10-year Intersectoral Global Action Plan on Epilepsy and Other Neurological Conditions in 2022. This Action Plan outlines 5 strategic objectives with clear targets to improve the quality of life of people impacted by neurological conditions and to reduce the risk of developing neurological conditions.

Astri Arnesen, (President, EFNA) welcomed those attending, particularly the speakers who were generous to give their time to shared their lived experience. Speaking from experience Astri mentioned that the true impact of being a part of a family living with a neurological condition is so much more than that which is noted in healthcare systems.

Dr. Orla Galvin (Executive Director, EFNA) presented the results of a recent EFNA survey which generated almost 4,700 responses.
Some highlights from this presentation were:

The invisible physical issues that people living with neurological conditions deal with most often are fatigue and pain, affecting more than 50%, and sleep and cognitive issues affecting around 40%.
The respondents stated that in many cases (85%) their health care provider does not believe the extent or severity of the symptoms and consequently they don’t receive adequate treatment (83%). Initially misdiagnosis are very common (67%)
For the majority, the diseases cause challenges related to education, work and social interaction. Patients face challenges and lack of understanding from their employer and only around 1/3 reported that of employers accommodated adaptations to facilitate work performance.
Being affected by a neurological condition also has huge financial implications in relation to health related costs, negative influence on income and access to mortgage and insurance. The same applies for carers.
Stigma remains a major issue – 41% indicated they experience stigma a little, while 43% indicated they experience it a lot. Collectively this indicates 84% of people experience stigma as a result of their neurological condition. This is down from the 92% previously reported by EFNA but there is a lot of room for continued improvement.

In terms of what MEPs can do to support improvements in this space, Orla called for MEPs to join the neurology patient voice by becoming a member of the MEP Interest Group on Brain Health and Neurological Conditions; to support the development of the intergroup on Brain Health Research; and to sign the Call to Action for Rare Neurology – an area which is often neglected.

In the first panel discussion, we heard from:

Dr. Anna Jansen, Chair of the European Paediatric Neurology Society (EPNS) Advocacy and Collaboration Committee, who spoke about the healthcare workforce shortages across Europe for Paediatric Neurology. Two major causative reasons were the need for training in this speciality and improved financial support. Anna spoke about how the EPNS is working to promote excellence in patient care and toward the implementation of the 10-year Intersectoral Global Action Plan on Epilepsy and other Neurological Conditions. Anna indicated 10%-20% of children worldwide are affected by neurological or developmental disorder. Often asked if the number of cases are on the increase Anna reported this reflection may be due to an increase in known genetic causes, environmental and socioeconomic factors and improvements in diagnostics, and increased survival rates in premature babies. However there is a need for improved awareness, diagnostic criteria and tools support timely diagnoses.

John Gerbild, Association Supervisor, Ataxia-Europe spoke about life as part of a family with an inherited rare neurological condition. John was a caregiver for many years to his wife who lived with Ataxia, a condition which causes poor muscle control affecting balance, movement, speech, eye coordination among other symptoms. His daughter also has this condition and John spoke about how this impacts her life decisions, doing what she can while she can, and opting to avoid parenthood.

Elvira Vacas Montero, President, Federatión Espanola de Epilepsia (FEDE) who is also a parent to a son with epilepsy, spoke about the difficulties children face in the education system when living with epilepsy. Stigma and discrimination are major issues and calls for all people with epilepsy particularly children with epilepsy to be treated equally and as their right, to have access to an education.

Chantel Fouche, Member at Large, ADHD-Europe spoke to us about her long term misdiagnosis prior to her final diagnosis with ADHD, and the impact that ADHD has had on her sons. Chantel spoke about how the quality of care in countries varies as reflected by the countries in which her children were raised, the value of multidisciplinary care, and the drive and ambition her children have. With the right care and support systems they can have the opportunity to reach their full potential. In contrast, when misdiagnosed and without care, understanding and support systems, life is much more difficult.

In the second panel discussion, we heard from

Gracemarie Bricalli, President, European Myalgic Encephalomyelitis Alliance (EMEA), who spoke to us about ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome). Gracemarie highlighted how the name is misleading and contributes to the stigma that people with ME are lazy, liars, that the condition does not really exist or that it is psychosomatic. These myths are not aided by the fact that to date no biomarkers are known. Yet ME has been recognised by the WHO since 1969. In Europe the EU Commission reported that there are 2 million known cases, however, this estimated to be only 10% of the total number of actual cases.

People living with ME can often be intolerant to light, sound, smell and human touch, can be affected by weakness and brain fog. In more severe cases, people with ME cannot talk and must be tube fed. Through not taking this condition seriously people living with ME have their human rights violated, the universal health coverage package is not meaningful and their disabilities are not recognised. With stigma, discrimination, isolation, the unpredictability of the condition and the absence of treatment options, many consider suicide. The EMEA call for the implementation of the 2020 EU resolution on ME.

Elisabeth Kasilingam, CEO, European Multiple Sclerosis Platform (EMSP) raised the issue of disparities in treatment and support across the EU for people living with MS. Barriers to treatment include access, availability, lack of public funding for research, social exclusion and workforce discrimination. The EMSP discovered that at least 7 countries in the EU do not protect people with MS in the workplace, and that only 48% of people with MS were employed. In agreement with previous speakers and with the EFNA survey data, pain and fatigue were major causes of disability for those with MS. Unfortunately disability criteria/status is assessed on physical abilities and as such are often insufficient to gauge the full extent of social support people with MS require.

Ángela Cano Palomares, Advocacy and Projects Manager, European Pain Federation (EFIC) spoke about the difficulties in measuring pain and EFIC recommends that multiple measures including patient reported outcome measures (PROMs) are used to more accurately report pain levels. Those affected by pain disorders or who have conditions with pain as a major symptom often experience stigma, and example of migraine was given. There is a lot that could be done to reduce stigma in the workplace with reasonable flexible working conditions, and support for reintegration back to work once pain is managed. Health literacy was again mentioned as a hot topic with the need for clear communication in plain language being key to support the conversations between patients and healthcare professionals about pain.

Julian Spinks, Vice-President, European Alliance for Restless Legs Syndrome (EARLS) spoke to us about the most common condition you never heard of- Restless Legs Syndrome (RLS). It’s estimated that 5%-10% of the European population are affected by RLS, with incidence affecting 21% of pregnant women. 2%-3% of the population are affected so severely they require treatment- for Europe that is ~8,980,000 people! A major challenge with diagnosis is that for many the severe symptoms present at night time. 93% of people with RLS report a negative impact on sleep, and unsurprisingly for those sleeping with a partner or spouse this impacts their sleep too. 75% report a negative impact on their quality of life, with 40% indicating they were less productive at work. Devastatingly over 14% considered suicide or self-harm.

Reflecting on this data, coupled with real life testimonies, the MEPs in attendance MEP Romana Jerković ( S&D, Croatia); MEP Nina Carberry (EPP, Ireland); MEP Ana Miranda Paz (Greens/EFA, Spain); MEP Tomislav Sokol (EPP, Croatia); MEP Margarita Pisa Carrión (PfE, Spain); MEP Ondřej Dostál (Non-attached member, Czech Republic) shared some of their personal experiences with neurological conditions and the impact on families. MEP Cynthia Ní Mhurchú (Renew, Ireland) also contributed through a video message of support.

From Eastern to Western Europe; patients, caregivers, clinicians, patient organisations and MEPs from across parties concluded the meeting with statements of support for those affected by neurological conditions, and with a renewed drive to improve health and quality of life for the people off Europe!

In full acknowledgement that neurological conditions can impact people throughout their life-course, the take home messages which resonated with invited speakers and MEPs alike were that:

For children and young people (CYP), health, education and community sectors must collaborate to support the social, emotional, physical and academic well-being of (CYP) so they can reach their full potential.
People living with neurological conditions and the general public must be supported in their health literacy so they can understand what is happening to them physically and emotionally.
Healthcare professionals must be trained to recognise the invisible effects of neurological conditions and to use plain language in their communication with patients and carers.
Health policy and research must take a multidisciplinary approach which includes the voice and expertise of people with lived experience.
Policy makers can drive change to foster brain health communities and interventions to help prevent incidences of neurological conditions in the future.