SUDEP Action

Making every epilepsy death count
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Vital signposting for bereaved families now possible via 70% of GP surgeries in England

3rd Nov 2021
Ardens


Continuing SUDEP Action’s ongoing collaboration with Ardens, a letter to contact bereaved next-of-kin with details of support services after a death has now been integrated into over 70% of GP surgeries across England.

Ardens, who provide templates and resources for EMIS and SystmOne patient record systems, have how added extra options in their systems to enable clinicians to contact the next-of-kin when an epilepsy-related death has happened, along with guidance on where they can turn to in order to:

  • Arrange a funeral
  • Register a death
  • Get answers to their questions about death and what has happened
  • Understand the investigations after a death
  • Understand the inquest procedure
  • Access specialist support and counselling

For health professionals using EMIS patient record systems, there is also an alert available which will prompt clinicians to access the signposting letter, if appropriate.

Research involving people bereaved by epilepsy-related death has shown that all-too-often, bereaved people are not contacted after the death of a family member and many don’t know who they can turn to for help. This alert will help to ensure that the next-of-kin will be contacted after a death, and signposted to SUDEP Action as well as other useful services who can provide support and advice.

Why is this important?

Early signposting means bereaved families can access our tailored bereavement service, led by a qualified counsellor with over 10 years’ experience in epilepsy bereavement. Our specialist support is integrated with a casework service – we provide guidance and advocacy through investigations and inquests and help those bereaved get answers to their questions.

“This support was invaluable and helped enormously. The SUDEP Action support team did a fantastic job and I can't thank them enough for their dedication and commitment to helping me find answers and achieve some closure on the tragic event and complicated processes and challenges following on from this.” (Quote by a bereaved partner who was supported by our Bereavement Support Team)


Ardens templates are used by over 4,500 general practices across England. They also work with Clinical Commissioning Groups (CCGs), Sustainability & Transformation Partnerships (STPs) and Primary Care Networks (PCNs). This alert means that at a national level, ongoing support is offered to those who really need it.

Tracy Cowdry, Bereavement Support Services Manager from SUDEP Action, said: “Early help and support for people who have experienced an epilepsy related death is vital. They are often left with many questions, minimal support, as well as having to navigate unfamiliar and sometimes confusing death investigations. Not knowing where to turn for support can be the painful reality. This addition into many GP record systems is a huge step forward, enabling the bereaved to get to the right place, at the right time, to receive the right help and support.”

Dr. Merlin Dunlop, Medical Director at Ardens commented: “We are always looking for ways to improve our tools to make them as effective and useful as possible for clinicians and patients. Following previous successful collaboration with SUDEP Action, we’re sure that putting these additional tools at the fingertips of over half of English GP surgeries will help to further improve care and support of bereaved families of patients with epilepsy.”

If you have lost someone to epilepsy or SUDEP, and would like to know how we can help, please contact us:
Support line: 01235 772852
Email: [email protected]
https://sudep.org/someone-has-died