Among those campaigning for change is the SUDEP Action charity which aims to prevent epilepsy related deaths and support bereaved families.
Sudden Unexpected Death in Epilepsy is where someone with the condition dies without warning, and no other cause of death is found.
Studies suggest one SUDEP death occurs for every 1,000 people with epilepsy every year, and accounts for half of all epilepsy deaths.
SUDEP action says the severity of an individual's epilepsy is the greatest risk factor, with those suffering tonic-clonic seizures more likely to be impacted.
The risk also increases with the number of seizures seen in a year, while other factors can include night seizures, a poor adherence to treatment, and earlier age of onset.
A younger adult age is seen as a risk factor, as is being male.
Prevention and awareness
National guidelines are that the risk can be minimised by optimising control and of being aware of the potential consequences of night seizures.
It is recommended that people with epilepsy speak with their health professionals about their individual risk levels. As half of all epilepsy deaths are not SUDEP related, people should be aware of all risks related to epilepsy which may cause injury or fatality.
Research has shown that around 42 per cent of all epilepsy deaths are potentially avoidable, so it is vital people with the condition know how to reduce their risks.
SUDEP Action has created two tools to support safety and enable discussions about risk.
The SUDEP & Seizure Safety Checklist is for clinicians to use with patients to support discussions and monitor epilepsy risks. Over 750 clinicians use it across the UK, and it has shown to improve the communication of SUDEP from around 10-20 per cent to over 80 per cent in Cornwall.
There is also a free digital app, EpSMon, enabling people with epilepsy to self-manage their condition, and is the patient version of the Checklist.
The Peter Doody Foundation
The Peter Doody Foundation has been set up to help and support young adults with epilepsy between the ages of 17 and 30, as well as their careers and families.
This can be practical support as well as emotional, and founders Joanne and Andrew Doody are keen to hear from individuals about how the charity can help them.
The goal is to normalise epilepsy and ease the stigma surrounding it.
Peter Doody, who died in May at the age of 21, had been known to friends as the boy who once playfully hacked the computers at Brighouse High School.His parents, in his legacy, use the #PetersHackingEpilepsy
To find out more, visit peterdoodyfoundation.org