SUDEP Action

Making every epilepsy death count
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Urgent action needed to investigate avoidable deaths, support bereaved families & learn lessons to improve future care; CQC report reveals

A report published by the Care Quality Commission, the independent regulator of health and social care in England, has urged the Government to make urgent and significant changes to the way avoidable deaths are investigated by NHS Trusts. This follows a string of high profile cases, which prompted a review of this process of investigating deaths across England. 

The CQC has placed bereaved families firmly at the front of their report after hearing from families and carers across the country, stating that following their loved one’s death they are ‘not consistently treated as equals with kindness, respect and honesty, even though many trusts state that they value family involvement’. 

The CQC summarises: ‘this report sets out the problems found, the challenges and barriers that exist across healthcare and how – in some areas – families and organisations that support them are trying to overcome these.’ Something SUDEP Action,  the only UK charity specialised in supporting those bereaved by epilepsy have experienced over the past 20 years. By working with bereaved families and NHS Trusts, together we have driven change in the devastating wake of an epilepsy death, but we recognise there is much more to be done; in the hope that future lives can be saved. 

As 42% of epilepsy deaths are known to be potentially preventable (National Audit, 2002), we have first-hand experience of how there are chances for lessons to be learnt following an epilepsy death. Our work with The Epilepsy Deaths Register has also shown how some of our bereaved families are treated inconsistently and not always positively following the death; something which we know can impact on their grief for many years to come. 

Jane Hanna, SUDEP Action Chief Executive commented:
We know only too well the struggles that families have after a death. The report highlights that resources are needed to free up and train staff to learn lessons from deaths and we hope that the government and the NHS leadership will support health professionals on the ground and make this happen”  

The report outlines the improvements needed to ensure avoidable deaths are accurately investigated, as ‘opportunities to improve care for future patients are being missed, because learning from deaths is not currently being given enough consideration in the NHS.’ The main points being:

1.    Learning from deaths needs much greater priority across the health and social care system. Without this, opportunities to improve care for future patients will continue to be missed.

2.    Bereaved relatives and carers must always be treated as equal partners and receive an honest and caring response from health and social care providers. Families and carers should be supported to the extent that they wish to be involved, with particular importance and priority given to the first discussion and explanation of the processes that will follow, offering a full and accurate explanation of the reasons the person died and a response to all concerns they have raised about care provided.

3.    Systems and processes need to be developed and implemented to ensure that all relevant providers are aware when a patient dies and that information from reviews and investigations is collected in a standardised way.

SUDEP Action wholeheartedly supports these recommendations made by the CQC and urges government, local NHS Trusts and families bereaved by epilepsy to make contact so we can work together to ensure lessons are learnt and improvements made where needed following some of the 1200 epilepsy deaths occurring each year across the UK. 

Click here to find out more about how our bereavement support service helps bereaved families following an epilepsy related death. 

To share your experiences following an epilepsy death to help inform future research and policy work, please report your experience to The Epilepsy Deaths Register