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“Speak up” campaign makes its mark in Westminster


8 April 2016

Last Month, Epilepsy Society launched a political campaign to end avoidable premature deaths in epilepsy. The campaign launch was a major success attracting high profile national media coverage, including Sky TV News, Channel Five and the Independent On Sunday. Our policy advisor Finn O'Dwyer explains why he feels encouraged by the response but still thinks more should be done by our Government.


We had a remarkable response from our supporters to our political campaign highlighting avoidable deaths in epilepsy, as close to 2,000 people across England emailed their local MP, asking them to lobby health secretary, Jeremy Hunt to commission a new National Clinical Audit on all epilepsy deaths. We want to thank all our supporters who took part in the campaign action - 512 MPs were emailed as a result of your letters.

We have seen replies sent to a number of our supporters, both from Government and opposition MPs, and it is clear there is concern within the House of Commons about the overall quality of care for people with epilepsy, and the highly variable outcomes uncovered by our campaign.

Awareness of the unacceptable rate of avoidable deaths has been helped by three MPs writing questions to the Secretary of State about plans to commission a new audit, and this was replicated by a group of seven members sponsoring an early day motion calling for Mr Hunt to take this action.

The Government’s response to the written parliamentary questions (WPQs), ultimately provided by minister for public health Jane Ellison, has mirrored the answer many received to their campaign emails. We are pleased that the department of health has recognised the importance of this campaign and has circulated a letter to Government MPs, which provides a full and detailed response to the campaign’s arguments. However, it must be said that this response fails to adequately address the central concerns raised by this campaign.

The department’s letter points to a few healthcare initiatives involving epilepsy patients, including the Epilepsy 12 audit and the National Mortality Case Record Review. The Epilepsy 12 audit has been an important piece of work in the field of paediatric epilepsy, as it has highlighted common trends over the past few years in epilepsy care for children and young people, with some positive and negative results.

The National Mortality Case Record Review is a broader piece of work that will look into case records of people with any condition or health issue who have died in acute hospital settings, and will eventually aim to create a nationally standardised process for these reviews, particularly in respect to problems in care that may have contributed to these deaths.

Both of these pieces of work are relevant to the overall understanding of how poor access and deficiencies in care in the NHS may be contributing to adverse outcomes for patients. However, none of the studies highlighted by the department of health have focused on uncovering the extent of avoidable epilepsy deaths since 2002, and the Government’s response has failed to explain why little has been done to address geographical disparities in outcomes and quality of care in recent years.

The response given to our supporters has not ruled out a full audit on epilepsy deaths taking place in the future, nor has it suggested that such a study is not needed. Indeed, The department’s answer suggests an acknowledgement that more information is necessary in order to improve the quality of services and the lives of people with epilepsy across the country. 

We have been encouraged by the Government’s willingness to listen to our supporters, and we are hopeful that further engagement with health ministers and other members of parliament will further our cause. We’re also grateful to those MPs who have taken the time to reply individually to those supporters who have offered their own personal stories. We will be pushing for a parliamentary debate on the issue of premature epilepsy deaths to continue our lobby for a full National Clinical Audit.

Our campaign has raised awareness of the 39 per cent of epilepsy deaths that could be avoided with better access to care, and of the large variation in outcomes for people with epilepsy across England. It is clear that these uncomfortable facts have struck a nerve in Westminster, so we must continue to seek the vital information that will help eliminate avoidable deaths and create an effective and efficient health service for people with epilepsy that is truly national.