SUDEP Action

Making every epilepsy death count
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Heads Together - a landmark for mental health

Founded by Prince Harry and the Duke and Duchess of Cambridge, the Heads Together campaign aims to tackle the stigma around depression and other psychological problems.

The death of someone you love is devastating and when it is unexpected it can have a huge psychological impact, yet people often think that the lives of the bereaved soon return to normal.  However, we know only too well, that their lives will never be the same again, but with time they can learn to live a new normal.  Part of the process of a healthy recovery for the bereaved, is having the opportunity and the time to talk, to ask questions and to try and understand what is going on internally.

People often find that support from friends and relatives is really good in the beginning but as time moves on so do others, leaving the bereaved alone and with nowhere to turn. The bereaved often feel confused, not knowing whether to talk, or whether to do something, they can be unsure what they want and can feel very lost.

We know people grieve differently and because of that it is sometimes easier to speak to someone outside the immediate family. People can then express their feelings honestly without fear of upsetting those around them.  Another barrier to processing grief is the need to be brave or to soldier on.

Prince Harry was just 12 when his mother, Princess Diana died; In a recent media article he was quoted as saying that he had only started speaking about the loss of his mother 3 years ago, some 16 years after her death. 

Speaking openly he said: 'It's OK to suffer, as long as you talk about it. It's not a weakness. Weakness is having a problem and not recognising it and not solving that problem.'  During his interview he highlighted how important talking can be, and said that it is extremely important for him to know that people recognise the benefit of it. 

Although talking about the death of someone close is not for everyone, it is important that those who need and want to should have the opportunity to do so. And, it is important that the bereaved are aware of charities that provide this important service.

Grief can be described as a tension that needs to be released in some way, whether by talking about it and expressing thoughts and feelings or in a more cognitive, proactive way, by doing something. If left unexpressed grief can become toxic, and manifest itself in a different way, with some people going on to develop mental health issues if their needs are not addressed.

People also grieve at a different pace, which can be quite confusing to observe within a family unit and misunderstandings can follow. People might feel and think that they are on a different page, that their grief seems more intense; that others didn’t care as much as they did; there is something wrong with me, or there is something wrong with them.  

We all have different relationships, different experiences in life and the way we are brought up can shape our personalities; gender difference can also influence how we express our grief.  

There is no rule book about grieving, the time it takes, the pace, or the intensity and difference. Grief is a unique experience to each and every individual, which has many different complexities. Society can place a burden on the bereaved to behave and express their grief in a certain way and dictate the amount of time taken, which is not realistic and not helpful. The bereaved are already under a lot of pressure and don’t need these unrealistic expectations placed on them. 

While investigating the findings of the Epilepsy Deaths Register, we noted that consistently the bereaved highlighted the need to talk, to have counselling and to have information after a death. These findings endorse the Heads Together project. 

Epilepsy related deaths are nearly all unexpected and as such are high risk for the bereaved to develop complex mental health issues.  SUDEP Action provide services that are highlighted by the bereaved as helpful to them: one off support to help with understanding what may have happened; long term support to help them through the difficult days and telephone counselling if things become unmanageable and they have difficulty with their day-to-day living.

   Karen Osland MBACP                                                                    Tracy Cowdry MBACP

Karen and Tracy are generic counsellors who work for SUDEP Action in bereavement support they have over 20 years’ experience supporting people who have experienced an epilepsy related death; and in-depth knowledge of sudden death and its complexities.

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