The Epilepsy Action Excellence Collective

An innovative new project to create change and connect the epilepsy community, called the Epilepsy Action Excellence Collective was launched in February.

The Excellence Collective will drive change and improvement in all aspects of epilepsy care by bringing together people with epilepsy, health and social care professionals, researchers and policy makers.

The Excellence Collective will create and facilitate improvements through a variety of diverse mechanisms.

These include funding and supporting quality improvement projects within health and social care organisations, creating an information repository, mapping epilepsy services and support across the UK, bridging the gap between research and practice, and supporting other organisations to improve their services for people with epilepsy.

The Excellence Collective brings together everyone with an interest in epilepsy.

As with all of our work, this starts with people affected by epilepsy. These are our members, supporters, volunteers and followers.

We will gather information from them through our services, helpline, social media, surveys and consultations, and this will set the direction for the work we do.

This will show us their priority topics, the problems they face and whether there are differences in priorities across the regions of the UK.

We can communicate their needs to the other stakeholders within the collective, ensuring that research and care reflects the desires of people with epilepsy.

We will also use the information we collect from the other stakeholders in the Collective to create resources that people affected by epilepsy can use. For example, we will map epilepsy services across the UK, provide conversation guides for appointments, deliver up-to-date information on treatments and investigations, and inform them of the latest research.

We will also work very closely with health and social care professionals.

This includes any and all professionals who may come into contact with people with epilepsy, from neurologists and epilepsy specialist nurses, to paramedics, occupational therapists, social workers, professional carers and everyone in between.

We will have a constant open dialogue with these professionals to find out what is happening in practise, what their priorities are, what support they need, what problems they face and what they hear from their patients.

We will share examples of best practice, toolkits and guidance  that can enhance care and bring people together to share ideas and solutions. The information we collect will also inform the quality improvement projects that we fund and support, and our campaigns and lobbying with policy makers within the NHS and government.

Epilepsy researchers are a key part of the Collective.

There is a disconnect between what is found in research and what is done in practise when it comes to epilepsy care.

We want to bridge that gap and ensure that all aspects of care are based on the most up to date and relevant information. We will create communication channels between researchers and healthcare professionals to allow new discoveries to be shared quickly and easily.

We will also develop tools to assist with putting research findings into practice. Alongside disseminating information about current findings, we will work closely with research institutions and funders to highlight knowledge gaps  and prioritise these areas for research attention.

To support this future research, we will lobby decision makers to ensure that research funding, resources and attention are available from both funders and the NHS, as well as other organisations, to support research in priority areas.

Policy makers within the NHS, local and national governments have an important role to play within the Excellence Collective.

They will make us aware of the priorities and constraints within their organisations, which can help us to target our campaigns.

We will make sure the needs and wants of the other stakeholders are communicated to policy and decision makers, and lobby for change on our key priorities.

We will also use the information gathered from policy makers to provide support for people wanting to create change, for example by providing business cases, support with commissioning, information on key priorities and targets within the NHS/local ICB and guides on speaking to politicians.

The purpose of the Excellence Collective is to create improvements for people with epilepsy.

There are no limits on what this improvement should involve. It is improvement across the board, for every person affected by epilepsy and for every aspect of life with epilepsy.

People with epilepsy deserve to live normal lives without restrictions or barriers to good quality of life and the Excellence Collective will bring together the whole epilepsy community to break down the barriers they face.

This improvement will be created in a variety of different ways.

Our priorities will be based on everything we hear from our stakeholders, and will evolve over time and as our work progresses. We will encourage information sharing between stakeholders and develop tools to encourage and facilitate change.

The following priorities have been chosen for our first year of operation:

Funding and Supporting Quality Improvement Projects

The collective will fund and support quality improvement projects within the NHS, social care and other organisations that support people with epilepsy.

We will use the input from all of our stakeholders to identify key priority areas for improvement, which may be around a particular topic (e.g. transition to adult services, learning disability and epilepsy, epilepsy and sport, etc), a geographical area or both. We will then ask for project proposals to tackle those priorities and use stakeholder representatives to decide which projects receive funding.

We will also provide non-financial support to projects. This will include access to our volunteers and PPI representatives, helping to run focus groups, creating and disseminating surveys, and sharing information with other stakeholders.

In 2024 we are supporting two projects, one of which we are funding entirely and the other we are part-funding and project managing.

The first of these projects will map care for pregnant people with epilepsy and create a toolkit to ensure care is safe, holistic and effective. The second project will create self-management training for people with epilepsy and a learning disability.

We have chosen these projects based on the feedback we have received both from people with epilepsy and from healthcare professionals, who highlighted serious gaps in care for both pregnant people and people with learning disabilities. The outcomes of these projects will help to fill those gaps and improve patient safety.

Information repository and Epilepsy Map

We will create an information repository, combining information from all of the stakeholders. This will include examples of best practise from our healthcare professionals, new research findings, available services, commissioning resources, prevalence statistics and much more. Where applicable, this will be broken down by region.

We will also host an epilepsy map on our website. This will include all the information relevant to someone affected by epilepsy, broken down by region. It will list the prevalence and incidence, regional tertiary centres, epilepsy workforce numbers (see p?), our support services (such as local talk and support groups), other support resources and useful links.

Translating research into practice

There is a wide gap between what research suggests would be helpful for people with epilepsy and what is done in practise. It can be very difficult for healthcare professionals to keep up to date with current findings alongside their clinical roles, and even when they do find new ideas, policies may prevent them from making changes.

We want to help bridge that gap, by sharing information between researchers and health and social care professionals, and influencing policy makers to update policies in line with the latest research.

We will create open lines of communication between these groups and allow them to share findings, barriers to change and ways to overcome those barriers. We will create resources to support the implementation of findings and tools that can be used to make the case for change.

If you’re interested in being part of the collective, you can sign up for free.

We are interested in hearing from everyone with an interest in epilepsy, whether you’re a healthcare professional, researcher, policy maker, carer or some affected by epilepsy.

If you have any ideas you would like to share with us, you can contact Tom Shillito by emailing tshillito@epilepsy.org.uk