We exist to improve the lives
of everyone affected by epilepsy


Save our Sapphires, protecting all epilepsy specialist nurse posts

Best Value report cover

Epilepsy Action launched ‘Save our Sapphires’ campaign to protect and promote epilepsy specialist nurse (ESN) post.

Launched July 2010 - Campaign now finished

Why we launched Save Our Sapphires

In late 2009, we heard that some epilepsy specialist nurse (ESN) jobs were under threat. We were told that some ESNs were asked to work some of their shifts on general ward duties - taking them away from their patients with epilepsy. We noticed that some trusts weren’t replacing ESNs who had left employment with a new ESN. Instead the old ESN job remained vacant, without any plans to recruit a replacement.

These developments gave us many concerns. After talking to adults and children with epilepsy and their families, we understand the positive impact they make on your lives. However there are only 250 ESNs employed in the UK. To provide the right service to everyone in the UK who needs to see a nurse, we need around 1,100 nurses that’s more than four times the number we have now.

We believe that ESNs are vital to an epilepsy service. Appointing an ESN is the simplest and most effective step a health organisation can take to improve its epilepsy service. This is proven in the report Best care: The value of epilepsy specialist nurses. This report was based upon a study by reserachers at Liverpool John Moores University on our behalf in 2010. 

The report shows that among their many duties, ESNs:

  • Review the control of seizures and adjust or change medication,
  • Provide essential advice and information,
  • Help patients understand the risks that come with epilepsy,
  • Provide a link, and first point of contact for a person trying to work their way through a complicated health system, and
  • Give time and support to help reduce the impact of this serious and often misunderstood condition.

We believe that without epilepsy specialist nurses, many of these things wouldn’t happen.

They look at many of a person’s problems early, and deal with them before they become much bigger. They also deal with many of the more common problems, freeing neurologists to concentrate their time on more complex cases. This creates a better service for everyone, and saves money. 

We appreciate that, at the moment, funds within the NHS are tight. We know that the NHS is looking to make savings. But we believe it is a ‘false economy’ – it will end up costing more money in the long term – to think that cutting specialist nurse services will save money.

How we campaigned together

With your help, we:

    • Identified all the epilepsy specialist nurses that needed our support. You contacted us to tell us when your ESN had left and not been replaced, or had their hours reduced, or had reason to believe that your ESN's role was under threat.
    • Sent letters to local NHS organisations, asking them to provide reassurance about the continued employment of ESNs. Many of you did this by dowloading, signing and sending our template letter.
    • Formally handed over a petition that was signed by over 2,000 people to Laura Sandys, Member of Parliament for Thanet South, and Chair of the All-Party Parliamentary Group on Epilepsy (APG), in July 2011. You publically showed your support for epilepsy specialist nurses, and backed our call on the governments of the UK to recognise that epilepsy specialist nurses are vital in the care and support of people with epilepsy.
    • Persuaded a group of MPs to support this campaign by tabling an Early Day Motion in Westminster (in 2010) which attracted the support and signatures of 125 MPs. 
    • Launched Best Care: The value of epilepsy specialist nurses. Based on a study by researchers at Liverpool John Moores University, the report was shared with all MPs, peers, and politicians in the devolved administrations of Scotland, Wales and Northern Ireland. It was also sent to chief executives and commissioners at the NHS, neurologists and paediatricians working in epilepsy and, of course, epilepsy specialist nurses. Every Epilepsy Action branch was also sent a copy of the report.  
    • Launched a media campaign - we told the public about the difference that ESNs make to your care. Some of you talked about your nurse to the press, while others attended our press launch in Leeds. 
    • Celebrated the work that epilepsy specialist nurses do with our Nurses: have your say page. Some of you used this as an opportunity to talk about why ESNs are important and the difference that they make to your life. 
    • Gathered evidence that we continue to use when showing the health service why they should employ more nurses and as part of our ongoing efforts to support the development of more ESN posts in the future. 
Thank you for sharing your time and giving your support to this campaign.  

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