OneNeurology prioritises community mobilisation at its first Global Advocacy Workshop

05 Aug 2021 Stroke awareness Stroke prevention

The OneNeurology Initiative convened its first Global Advocacy Workshop in June 2021 to capture views on the Global Action Plan on epilepsy and other neurological disorders developed by the WHO Brain Health Unit.

Background

The OneNeurology Initiative aims to unite and strengthen neurology-related groups to stimulate collaborative advocacy, action and accountability for the prevention, treatment and management of neurological disorders worldwide.

Policy momentum is building with the development by the WHO Brain Health Unit of the Global Action Plan on epilepsy and other neurological disorders [GAP], to be adopted by the World Health Assembly in May 2022. The GAP represents a unique opportunity worldwide to build, with all relevant stakeholders, an integrated response to neurology across the life course and within healthcare systems to improve lives of people living with neurological disorders. Mobilising the community is essential to ensure that the plan serves the needs of all those living with neurological disorders across the globe.

The Global Advocacy Workshop took place virtually on 29^th June 2021, and attracted approximately 60 advocates, with the majority from Europe, but there were participants from Australia, USA, Cuba, Malawi and India.

Setting the scene

Almost 60% of participants felt policy makers in their country did not fully understand the burden of neurological disorders and the need to act now.
In only one country represented at the meeting (Scotland) is there a standalone policy framework for neurology. In most countries, there were some disease specific plans/strategies but no overarching framework. In many countries, neurology is not on the public health agenda at all.
Participants felt that the GAP was an opportunity to call for disease-specific plans/strategies to come together under one national framework.
Most participants felt a wider strategy on brain health was the optimal outcome, although this was closely followed by standalone strategies on neurology. In terms of what was realistic within 10 years, most felt a brain health plan was achievable. However, many also thought disease specific entry point and/or integration in NCD plans was more likely in their regions.

Initial comments on the Global Action Plan

In the main, the plan was well received – although it was felt that regional/national prioritisation would be needed to address specific needs in different parts of the world.
There were calls for more emphasis to be given to specific population groups e.g. carers, young people, refugees and asylum seekers.
The role of nurses in the text is not sufficiently addressed.
Palliative care and neuro-rehabilitation are mentioned – but it was felt they were not given sufficient attention.
It was felt that the focus on raising awareness of brain health could be better linked to raising awareness of neurological disorders.
Ensuring access to early, accurate diagnosis needs to be better emphasised – as well as adherence to treatment.
Important to enshrine the added value of the meaningful involvement of those living with neurological disorders in shaping, implementing and monitoring the plan – but also ensuring they are resourced to do so, particularly in LMIC settings.
Finance was raised – how will this be resourced?
Covid and Long-Covid discussed as areas to be leveraged by neurology.

Most important actions for key actors

Participants ranked the most important actions for key actors:

WHO International

Set and monitor targets: those listed need to be strengthened, there should also be intermediate targets and indicators developed to map progress.
Conduct global research, facilitate global data sharing and coordinate global access initiatives.

WHO Regional Offices

Monitor and guide implementation by member states
Map the burden of neurological disorders regionally (and prioritise actions)

Member States

Ensuring equitable access to diagnosis, treatment and care
Collecting national data
Supporting research

Civil Society

Advocate for involvement
Raise awareness of neurological disorders

The support identified as needed by civil society included: advocacy and policy training and support to build alliances.

Next steps

Member States hold the key. OneNeurology must build up its regional structures – this could include identifying advocates, organising training/capacity building activities and supporting the creation of alliances. A mapping will take place with OneNeurology Partners but also other international civil society groups.
Need to prioritise 2-3 cross-cutting topics and themes to engage disease specific groups and advocates.
Participants were encouraged to sign up as OneNeurology partners (if they meet criteria), endorsers or subscribers.
OneNeurology outreach to member states in advance of regional hearings in July.
Participants will be sent a template letter which they can personalise and send to their national governments and/or missions to the WHO.
Autumn workshops will take place based on the second draft of the GAP, with a focus on supporting advocacy at member state level.
EU OneNeurology Summit will take place in December 2021.

Find out more at: www.oneneurology.net

Twitter: @OneNeurology_

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