1. Reducing Epilepsy Related Deaths
All Party Parliamentary Group for Epilepsy
28th November 2018
#Prevent21Summit
SUDEP Action, registered charity (England & Wales), SC (Scotland).
Epilepsy Bereaved (founded 1995) is part of SUDEP Action.
sudep.org

2. Professor Mike Kerr SUDEP Action’s Prevent 21 Summit
Professor of Learning Disability Psychiatry Cardiff University & Swansea University
SUDEP Action’s Prevent 21 Summit
On Tackling Epilepsy Deaths:
What can we do?
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

3. Collaboration workshop: What can be done to help prevent future deaths?
Following the presentations a collaboration workshop was held
In groups attendees focused on what could be done to tackle key themes which came out of the presentations & discussion around them: 1
VOLUNTARY SECTOR COLLABORATION ON EPILEPSY-RELATED DEATHS 2
ADVOCACY ON EPILEPSY-RELATED DEATHS 3
COMMUNICATING, REVIEWING & MANAGING EPILEPSY RISKS 4
ADOPTION OF BEREAVED FAMILY RECOMMENDATIONS ACROSS THE EPILEPSY COMMUNITY 5
SUPPORTING CLINICIANS TO CHANGE BEHAVIOURS 6
CONSISTENCY OF ACCESS TO SERVICES, AND MANAGING PEOPLE WITH EPILEPSY IN DEPRIVATION 7
MAKING MORE OF RESEARCH DATA
Following the day of presentations where attendees shared their views, evidence & questions about what is & can be done to tackle deaths, a collaboration workshop was held
Key themes from the previous day’s event were drawn out and in groups (with a range of stakeholders in each) these themes were discussed to look at what ACTIONS & OUTCOMES were achievable to be able to tackle epilepsy deaths. Each group looked at 2 of the topics – 1st giving their initial thoughts, 2nd critiquing & refining another groups ideas.
The point of these discussions were to move past what SHOULD be done, to what CAN be done – whether these were:
long-term or short-term goals
Individual projects or actions
National changes
Collaborative / cross team efforts
The aim was to really define the actual steps we could achieve by working together as any epilepsy community to stop deaths, use existing resources wisely, improve services/systems/processes & avoid unnecessary reinvention of the wheel and wastage of time, effort and resource.
Following this group work, each key theme then had a recommendation (of Actions/Outcomes to help tackle epilepsy deaths).
These were then ranked by each group to show the ease of implementing them (how easy would it be to make this recommendation happen?) and what the impact this recommendation would have of stopping future deaths (once we are able to achieve it).
This gave us as a group a list of recommendations which where ranked (most impactful & easy to implement at the top) – showing us clear areas to focus and work together on which could make a significant difference to people living with epilepsy, and potentially save many lives.
For each theme, the ACTIONS and OUTCOMES were then prioritised by ranking ‘EASE OF IMPLEMENTATION’ and ‘IMPACT’:
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

4. Prevent21 Summit Recommendations
VOLUNTARY SECTOR COLLABORATION ON EPILEPSY- RELATED DEATHS
SUDEP Action will lead on collaboration between epilepsy charities to tackle pathways and spread good practice that will avoid future epilepsy-related deaths; safeguarding bereaved families & people of all ages with epilepsy, and their families.
Using existing data, technology and resources at national and local levels, to drive innovation, improve access to services and influence practice to avoid deaths. Helping to provide a lever to improve quality of life for those living with the condition. 2
ADVOCACY ON EPILEPSY- RELATED DEATHS
SUDEP Action will bring collaborating organisations together and as part of this collaboration’s policy work, will lead on a standing item to the All Party Parliamentary Group for Epilepsy (APPGE) on Epilepsy-related deaths.
On behalf of the collaboration, they will feed information on epilepsy- related deaths into policy work, working with organisations in England, Scotland, Wales & Ireland to have a broad and inclusive movement.
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

5. COMMUNICATING, REVIEWING & MANAGING EPILEPSY RISKS
Prevent21 Summit Recommendations 3
COMMUNICATING, REVIEWING & MANAGING EPILEPSY RISKS
The Community supporting people with epilepsy will ensure an epilepsy review is undertaken at least annually, with the SUDEP & Seizure Safety Checklist informing this practice. This will:
help communicate information in a person centred and holistic manner
be done with all people with epilepsy to provide advice of changes needed to reduce risks
support future working and risk communication across clinical settings, enabling effective risk flagging and patient referral to appropriate services 4
ADOPTION OF BEREAVED FAMILY RECOMMEND- ATIONS ACROSS THE EPILEPSY COMMUNITY
The Epilepsy Community support the development & implementation of:
a national protocol to standardise the reporting of all epilepsy deaths
an educational training programme based around existing safety tools and SUDEP Action e-learning materials on risk
a consistent bereavement pathway, supported by best practice guidelines after an epilepsy-related death
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

6. SUPPORTING CLINICIANS TO CHANGE BEHAVIOURS
Prevent21 Summit Recommendations 5
SUPPORTING CLINICIANS TO CHANGE BEHAVIOURS
The Epilepsy Community will work together to:
highlight the inequality of epilepsy service provision both geographically & in comparison to other long-term conditions
lobby Government & Policy-makers across the UK to:
promote Epilepsy best practice regarding tackling epilepsy deaths via available channels (eg: via Local transformation hubs, e-learning & membership organisations)
support clinicians to review patients (including risk/SUDEP) at least annually; identifying potential to embed an alert for GP/epilepsy specialist when review is required
identify systems & process which alert clinicians when a patient dies from their epilepsy, so lessons can be learnt, and bereaved families can be supported
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

7. Prevent21 Summit Recommendations6
CONSISTENCY OF ACCESS TO SERVICES, AND MANAGING PEOPLE WITH EPILEPSY IN DEPRIVATION
The Epilepsy Community will work towards:
ensuring community outreach and into A&E services so people not traditionally engaged in epilepsy services are also managed & supported, especially regarding risk reduction eg: Those in the prison system; living in remote areas; who need professional interpreters; with comorbidities such as mental health conditions; who don't attend appointments, and those in transition (children to adult services).
flagging and referring urgently those living with epilepsy who are potentially vulnerable & requiring additional support to manage their condition eg: training, medications advice & support with risk reduction strategies.
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

8. MAKING MORE OF RESEARCH DATA
Prevent21 Summit Recommendations 7
MAKING MORE OF RESEARCH DATA
The Epilepsy Community will strive to integrate a nationwide system for capturing epilepsy and comorbidity data (this is a long-term goal).
In the meantime, it will strive to:
embed new NICE/SIGN guidance & Quality Standards so that an epilepsy death without prior documented safety checklist/discussion should not happen
re-establish an epilepsy Quality Outcome Framework (QoF) in General Practice (or equivalent review process) and ensure it includes a risk checklist
support non-specialist clinicians with robust practical e-learning tools
raise the profile of SUDEP/Epilepsy deaths research with grant giving bodies; ensuring this is recognised as priority by encouraging themed calls (eg: to support ‘on the ground’, innovative or clinic-based research) AND collaboration with other funders.
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

9. Questions?
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

10. Next steps: What is already happening as a result of the Summit to tackle epilepsy deaths?
Prevent21 Summit Recommendations Being shared with supportive organisations & policy makers
Epilepsy & Behaviour Journal Supplement Can MPs & supportive organisations help circulate?
Letter to Health Select Committee asking for an inquiry into epilepsy-related deaths
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

11. Next steps: What is already happening as a result of the Summit to tackle epilepsy deaths?
A series of Parliamentary Questions to be tabled EG: Who is the Minister responsible for Epilepsy? Will Neurology / Epilepsy be prioritised in the upcoming NHS 10-year plan?
APPGE to seek/push for a meeting with Secretary of State for Health and Social Care To highlight the Summit recommendations & the need for Gov. to meet with the bereaved community and support those tackling epilepsy deaths.
Epilepsy-related deaths to become a standing APPGE Agenda Item With SUDEP Action updating the APPGE on work relating to Epilepsy-related deaths at future APPGE meetings – coordinating with other Epilepsy organisations, supportive MPs and APPGE Chair in-between meetings to progress actions and achieve outcomes
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

12. Next steps:
How can the epilepsy community work together to save lives?
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

13. Thank You
For more information or if you’d like to support this work moving forward, contact Sammy Ashby:
#Prevent21Summit
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org