Newly Launched Epilepsy App Shortlisted for Two Prestigious Health Service Journal Awards 2015

Press Release • Sep 17, 2015

Wantage, Oxfordshire, September 17, 2015 (Newswire.com) - The world’s first, Epilepsy Self-Monitoring app EpSMon, recently launched by epilepsy Charity SUDEP Action, has been shortlisted from over 1,600 entries in two categories of the prestigious Health Service Journal (HSJ) Awards.

The awards are the largest celebration of excellence in UK healthcare, highlighting the most innovative and successful people and projects in the sector.

The app, which supports adults with epilepsy, was developed by a team including clinicians, patients and health information experts at SUDEP Action, Cornwall Partnership NHS Foundation Trust, Plymouth University and Royal Cornwall Hospitals Trust.

EpSMon has been shortlisted in the categories of ‘patient safety’ and ‘improving efficiency with technology’. The app brings life-saving information to the fingertips of people with epilepsy who experience seizures, by allowing them to assess their risk every three months.

The use of the app has been likened to a person with hypertension monitoring their condition with a domestic blood pressure device. EpSMon allows someone with epilepsy to check they have a planned review of their condition in the future, or schedule an earlier check-up if they are reporting increased risk factors.

EpSMon was developed from the SUDEP and Seizure Safety Checklist, a clinical tool designed to help health professionals monitor and discuss their patients’ epilepsy risks and well-being.

Jane Hanna OBE from SUDEP Action commented:  “EpSMon being shortlisted for this national award is not only exciting but is vital in helping us get the message out to people with epilepsy that they can use technology to analyse their health, self-monitor, and engage with doctors when they need to ”. 

Dr Rohit Shankar, Consultant in Adult Neuropsychiatry at Cornwall Partnership NHS Foundation Trust is one of the clinicians involved in the development of the app. He said;

“I am delighted to see EpSMon shortlisted in the Health Service Journal Awards just two months after its launch. The idea of the app was originally explored to help people with a learning difficulties and epilepsy to manage the risks, but with our partners, we have been able to make it available to help everyone with the condition. I hope the judges will see the potential of the app to save hundreds of lives across the UK each year.”

Approximately 1,200 lives are claimed by epilepsy each year in the UK, and research indicates that 42% of these deaths could be preventable.

EpSMon helps people to reduce their risk by asking questions which formed part of an axed GP monitoring service, including their last appointment about their epilepsy, information about their seizures and wellbeing. The app analyses the information provided and creates advice which ranges from ‘all clear, no further action required’ to ‘make an appointment with your doctor now’. The app’s analysis can be shown to a GP to help them decide the best treatment regime for their patient and encourages person-centred communication of the key risk issues.

Earlier this month it was announced that the app had been included as part of an epilepsy toolkit to be used across the UK by Clinical Commissioning Groups (CCGs) in the NHS.

The winners of the awards will be announced on 18 November in London.

NOTES TO EDITORS

HSJ Awards

The awards were created in 1981 to recognise, on a national platform, the projects and initiatives that deliver healthcare excellence and innovation. By shining a spotlight on cutting-edge innovations and best practice, the awards give impetus to improving the quality of health care in the UK.

Background notes

 

·         Epilepsy Bereaved now SUDEP Action was founded in 1995 to get recognition of SUDEP and other epilepsy-related deaths and to work towards prevention strategies. Epilepsy is one of the top-ten causes of early death.  Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions. At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:

•    To prevent deaths

•    To be supported

•    To be involved

We have won national and international honours for our achievements to date, but we recognise there is much more work to do.  There are five key strands to our work:

•    Providing information on SUDEP and risk in epilepsy

•    Offering support when someone has died

•    Involving people to help effect change

•    Sponsoring research and education to prevent future deaths

•    Capturing data across the UK through the Epilepsy Deaths Register

·         What is SUDEP? – About 600 of 1200 seizure-related deaths each year in the UK are SUDEP deaths which are sudden and unexpected. They differ in cause from seizure-related accidents such as drowning or status when a person has prolonged seizures. They have been compared with cot deaths because they usually happen out of the blue; at night during sleep; and the cause is not fully understood. In many deaths, the person is young and healthy and their family, friends and community as well as the doctors are left traumatised by the shock.

·         What does the research evidence show about who is at risk?  There is strong scientific evidence now that SUDEP deaths are seizure-related. Seizures which involve a total loss of consciousness are most associated.  Other risk factors include having nocturnal seizures.

·         What does the research evidence show about potential for prevention? Anti-epileptic medication will fully control seizures in 70% of people and surgery can help around 3% of those whose seizures are drug resistant.

·         What are the barriers to bringing the death rate down? Research has identified that clinicians are often reluctant to discuss risks of SUDEP with people with epilepsy and their families and unlike Cot Death, the public remains largely unaware of SUDEP. Epilepsy remains underrepresented in terms of research funding and vital work is needed in this area.

·         What is epilepsy? There are over 40 different types of epilepsy, but grouped together the epilepsies are the most common serious neurological condition, affecting around half a million people in the UK alone.

·         What should someone do if someone is having a seizure? After the seizure, lay the person on their side in the recovery position. Stay until they have recovered.  Once their breathing and colour is normal it is good to let them sleep until fully recovered. Only call an ambulance if one of the following circumstances applies: 

  • The person is injured.
  • The seizure does not stop after a few minutes.
  • A seizure follows closely after another. 
  • The person has trouble breathing.


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Terminology to avoid

  • Illness: epilepsy is a condition, not an illness.
  • Fit: although the term ‘seizure' or ‘epileptic seizure' is preferred by many people, some people with epilepsy choose to use the word ‘fit’.
  • An epileptic: it is important to look at the person before the medical condition, therefore it is more appropriate to say ‘a person with epilepsy'.
  • A victim, sufferer: this implies someone is helpless.
  • Grand Mal or Petit Mal: terms previously used to describe types of seizure. There are many types of seizures so these terms are too general and are now considered outdated.

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