July 2010
Epilepsy Action has launched its ‘Save our Sapphires’ campaign to protect and promote epilepsy specialist nurse (ESN) posts.
Since late 2009, we have been hearing that some specialist nurse posts are vulnerable. We have heard of some epilepsy specialist nurse posts that are not being refilled when a nurse leaves. Some nurses being asked to spend some of their shifts on general ward duties, instead of seeing patients with epilepsy.
What we need you to do
If you have a nurse, we need you to help us do everything we can to make sure their post is safe. If you don’t have a nurse, this is a great opportunity to campaign for one. There are various ways to get involved.
Our petition
In 2010, we also launched a petition for members of the public to show their support for epilepsy specialist nurses.
The petition was signed by over 2,000 people. It called on the governments of the UK to recognise that epilepsy specialist nurses are vital in the care and support of people with epilepsy. It asked for a strategic plan to increase the number of posts as well as a commitment to protect and support those nurses already in place
Epilepsy Action formally handed over the folder of signatures to Laura Sandys, Member of Parliament for Thanet South, and Chair of the All-Party Parliamentary Group on Epilepsy (APG), in July 2011.
Thank you to all those members and supporters who collected signatures and signed the petition. We do not know if the Department of Health will issue any formal response to the petition, but we hope they will do as the petition asks. This is make sure epilepsy specialist nursing is safe for the future, and is available for all those people who may benefit from it.
Shout about your nurse
We have launched a new section of our website, Nurses: have your say, for you to post messages of support for your nurse. If you don’t have access to a nurse, tell us why you would like to.
You can also write to your nurse to tell them why they are so important to you. They may find these letters useful if they ever find their post under threat. If you belong to a branch, you could invite your nurse to come down to your Epilepsy Action branch meeting and show them that you support the work they do.
Political support
In 2010, MPs supported our Save our Sapphires campaign by tabling an Early Day Motion in Westminster.
This was signed by 125 MPs. To see what the EDM said, and who signed up, please click here.
Write to your local NHS organisation
If you have a nurse, tell your local NHS organisation about our campaign and ask for reassurance that your nurse is safe. If you don’t have a nurse, ask them if they have plans to employ one. We have written a template letter which you can download and use if you wish. Word document PDF format
Keep us informed
Please copy us in to any letters or emails you send and send us copies of any replies you receive. It will help Epilepsy Action keep track of activity around the country and identify posts that are under threat and those that are safe. Send letters to Pete Scott, Campaigns and policy officer, Epilepsy Action, New Anstey House, Gate Way Drive, Yeadon LS19 7XY or email pscott@epilepsy.org.uk.
Help us raise awareness in the media
Is your nurse under threat? Has your nurse made a big difference to your life? You could volunteer to be an Epilepsy Action media case study, and work with us to raise awareness in your local media. To find out more about this, email Lucy Olafsson at lolafsson@epilepsy.org.uk or sign up online.
Be our eyes and ears
If you believe that a nurse post in your area of the UK is under threat, please let us know and we will do our best to investigate. You can email Sadaf Adnan at sadnan@epilepsy.org.uk, or call her on 0113 210 8800.
Why we need you to help
We are aware of a number of epilepsy specialist nurse posts where cuts have been made, jobs are under review or the working arrangements have been changed. We will be doing all that we can at a local level to prevent any loss of services.
However this campaign is about more than just protecting the nurse posts that currently exist. We want to celebrate the work that epilepsy specialist nurses do, and show why the health service should employ more nurses.
Epilepsy Action has invested £2 million in ESN posts through its Sapphire Nurse Scheme. Through our Save our Sapphires campaign we will be fighting to save all ESN posts, not just those we have funded, and for posts that we hope will be created in the future.
The role of specialist nurses
We believe that ESNs are vital to an epilepsy service and appointing an ESN is the simplest and most effective step a health organisation can take to improve its epilepsy service.
We believe this because you, our members and other people with epilepsy, tell us this.
There are around 250 ESNs in the UK. Around 1,100 nurses are needed to provide the right service to everyone in the UK who needs to see a nurse.
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. This is why we believe ESNs save money. They prevent problems from occurring in the future, such as hospital visits or unnecessary drug increases, which saves the National Health Service (NHS) money.
By dealing with many of the more common problems, ESNs free neurologists to concentrate their time on more complex cases. This creates a better service for everyone.
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.
The best care
In 2007, after the last time cuts threatened the ESN service, we asked Liverpool John Moores University to work on a piece of research to show their value. Epilepsy Action has now published a summary of this work to kick-off our campaign, a report called Best care: The value of epilepsy specialist nurses. Read the report [PDF].
We are sending this to all MPs, peers, and politicians in the devolved administrations of Scotland, Wales and Northern Ireland. We are also sending it to chief executives and commissioners at the NHS, neurologists and paediatricians working in epilepsy and, of course, epilepsy specialist nurses. Every Epilepsy Action branch is also being sent copies of the report. For your individual paper copy of the report, please email pscott@epilepsy.org.uk with your postal address.
This report is based on the research paper, Hopkins J and Irvine F, Identifying and monitoring the cost-effectiveness of the Epilepsy Specialist Nurse, 2010. Read the paper [PDF]
Your campaign
We hope our branches, members and supporters will join us in this campaign. It has a very simple message: to protect every epilepsy specialist nurse and show why there needs to be many more.
We have begun working with our branches in those areas of the UK where we know epilepsy specialist nurses have lost their job or feel they may do in the future.
We believe it is time that epilepsy specialist nurses were valued and appreciated as much by the NHS as they are by their patients.
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