Report: EFNA’S Stronger Connected Workshop

REPORT: EFNA’S STRONGER CONNECTED WORKSHOP

NOVEMBER 29TH 2023

Download the presentations here

The neurology advocacy community is in a favourable position with the adoption of the WHO’s 10-year intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP). However, the advocacy community does not yet have the capacity to utilise this significant policy tool as an advocacy tool at the local, regional, and national levels. 

On November 29th, 2023, EFNA launched the first Stronger Connected Workshop in Dublin, Ireland. This was held in response to several requests made to EFNA to provide guidance and support so that the IGAP could be better understood and opportunities for the community are not missed. The workshop aimed to showcase by example the benefits of collaborative action when addressing policymakers on major issues such as neurology and to improve understanding of the IGAP as an intersectoral advocacy tool for neurology. 

Dr Orla Galvin, Executive Director, EFNA, opened the workshop by giving an overview of what a Global Action Plan is and outlined the objective of the day ahead: To learn how WHO’s IGAP can be used as a tool to advocate for action and take a deeper dive into its strategic objectives and targets to highlight opportunities for national advocacy for neurology. 

In the first session of the day, ‘Making Neurology A Priority at National Level’ we learned about national Brain Health plans already launched in Switzerland and Finland. We first heard from the EAN Past President, Prof. Dr. Claudio Bassetti, Inselspital, University of Bern, who presented the Swiss Brain Health Plan 2023-2033: One Vision, One Plan, One Voice. Claudio highlighted the five strategic objectives of the Swiss Brain Health Plan to (1) raise awareness of brain health, (2) advance interprofessional training, (3) research on Brain Health determinants, (4) promotion of Brain Health and prevention of Brain Health disorders and (5) the empowerment of patients and caregivers.

Mika Pyykko (Finnish Brain Association) presented the Finnish Brain Health Plan. Mika highlighted the three coordination partners representing children and young people, the working-age population, and older people. Essential to any national plan, the Finnish Brain Health Programme includes a funding strategy based on impact investing.

We then heard of successful national-level neurology patient advocacy campaigns in Ireland and England.

Magdalen Rogers, Executive Director, Neurological Alliance of Ireland (NAI), explained that the NAI approach strategically focuses on manageable aspects of the IGAP. The content of the IGAP is vast, and broadly, the neurology community is at the initial stages of implementation. Mags related that common issues become clear when working with different patient organisations. It can be challenging to find a theme for an advocacy campaign that all NAI’s member organisations can support but the group settled on a common ask: the need for specialist nurses across neurology services. The NAI ran a dedicated campaign called Patients Deserve Better, highlighting the shortfall in specialist nurses across neurology sites. This successful campaign saw over 30 additional specialist nurses hired due to a single one-year campaign. View Mags’ presentation here.

Georgina Carr, Executive Director, The Neurological Alliance (England): presented the #BackThe1in6 campaign, which launched in the British Parliament with more than 20 Members of Parliament speaking in support. In addition, Georgina highlighted The Neurological Alliance’s strategic approach in addressing the government with respect to the IGAP implementation. She indicated how the NAI are collaborating on this approach with Australia and New Zealand.

In the second session, reports on the progress and implementation of the WHO’s IGAP, among specific themes in neurology, were shared. 

Donna Walsh, CEO, International Bureau for Epilepsy (IBE), presented epilepsy as an entry point to the WHO’s IGAP. 

The Global Epilepsy Needs Survey (GENS) was developed with an advisory board representing all perspectives: IBE Teams, IBE Community Council, ILAE, IBE Corporate Council, and external stakeholders. At the time of the workshop the survey had over 2500 responses. Donna highlighted the vital approach of harmonising the global and national IGAP targets with regionally coordinated domestication, supported by regional situational analysis and reporting, citing the efforts of WHO-AFRO. 

Another example, this time from the national level, is the multi-stakeholder EpiAlliance of Spain, which has focused on IGAP Strategic Objective 1: to ‘increase policy prioritisation and strengthen governance.’

An often-forgotten consideration is the children affected by neurological conditions. We were delighted to be joined by Dr Kathleen Gorman, representing the European Paediatric Neurology Society (EPNS) and Children’s Health Ireland at Temple Street Hospital. Dr Gorman highlighted how the WHO’s IGAP is relevant at all levels of the EPNS, from the board to committees to day-to-day operations. Importantly, IGAP includes a focus on all areas of paediatric neurology, including rare neurological conditions.

Dr Paul Carroll, Neurorehabilitation Centre of IrelandClinical Lead for the National Clinical Program in Rehabilitation Medicine, Health Services Executive, Ireland, presented on Rehabilitation in Ireland: an evolving landscape. Rehabilitation is an overarching theme across neurology. Dr Carroll highlighted global policy frameworks such as the WHO’s Constitution, the UN Conventions on the Rights of Persons with Disabilities, and the Strategy for the Rights of Persons With Disabilities 2021-2030. Dr Carroll stated that “the paradigm of healthcare needs to change to take a more holistic approach: The person, the disease, the social context, the built environment”.

Following the presentations, participants were invited to work through a workbook based on the potential IGAP opportunities (please find the workbook slides here).

An overwhelming response from participants was the need to digest the information received and the request for an additional workshop. 

We are delighted to announce EFNA’s second Stronger Connected Workshop will take place on April 5th in the London Heathrow Marriot Hotel 09:30am-4pm. An invitation to EFNA’s members will be extended in the coming weeks.

The multi-stakeholder Rare Neurology Charter was presented, and participants were invited to an online discussion on how we can progress the Charter by developing a Call to Action ahead of the EU elections. More information is available here.

Following presentation of the Rare Neurology Charter, Astri Arnesen, President, EFNA, reflected on the opportune moment in time that the rare neurology community has. With the WHO’s IGAP, Rare 2030 and enhanced investment to support the European Reference Networks, the time to call for action and take action is now.

If you would like to learn more about the WHO’s Intersectoral Global Action on Epilepsy and Other Neurological Disorders (IGAP) and the opportunities it presents for the neurology community, visit EFNA’s e-learning platform, which includes a series of modules dedicated to the subject.

Participants at EFNA’s Stronger Connected Workshop, November 2023