SUDEP Action

Making every epilepsy death count
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SUDEP Action supports proposal by NHS England to develop a five year strategy for mental health

While bereavement is seen as a natural part of life, 10% to 20% of people may require further help especially if the death was sudden and unexpected.

SUDEP Action supports the proposal by NHS England to develop a five year strategy for mental health.  National bodies will work together until 2021 to help people to have good mental health and access to evidence-based treatment. A survey highlighted that people wished for timelier access to talking therapies.

At SUDEP Action we recognise the benefit of talking, often with those outside the immediate family.  We often find it difficult to speak to others due to the differences in grieving and reactions to the death. Or, we may be trying to protect others, by shielding them from the way we are truly thinking and feeling.

We are aware that particularly with epilepsy deaths which can be sudden and at an untimely age, there is a high risk of the bereaved developing PTSD or traumatic grief.  It is therefore essential that people supporting those bereaved suddenly have experience of recognising more complicated symptoms and identify when to refer on to other services.

It is noted that some bereaved people may need to be seen by a mental health team and it is important that there is further specialised help is available.  Generally 1 in 4 people in the UK will suffer a mental health problem at some time and bereavement can exacerbate feelings that may have long been hidden.

The Mental Health Task Force Report highlighted three main themes which are prevention, access and quality. The top five areas people prioritised were early intervention; psychological therapies; home treatment; Information to manage mental health and mental health awareness among the public.

At SUDEP Action we recognise these themes and priority areas and already provide support services that fit with this thinking. We will be watching these reports very closely to ensure that our services are the best that we can provide for those who have experienced an epilepsy related death.

At SUDEP Action, we provide:

  • A service available to all who have been affected by an epilepsy related death
  • A first class service, developed over 20 years, with the bereaved, for the bereaved
  • Support immediately after a death and information about the death investigation process
  • Answers to questions about what may have happened and why
  • Telephone Counselling; allowing people access to therapy from their own homes
  • Information about epilepsy deaths and opportunities to meet others similarly bereaved

SUDEP Action also raises awareness of the needs of people with epilepsy and the bereaved.

You can contact the support team via: [email protected] or:  01235 772852

For further information on the Mental Health Task Force see: