Welcome to the latest Campaign Supporters’ Group newsletter. In the newsletter you will find updates on all of our campaigns as well as information about ways you can become involved.
It’s that time of year again when we use National Epilepsy Week to highlight important issues that affect people with epilepsy and campaign for change. Full details on the planned activities and how you can take part follow in the newsletter. There is also an update on Epilepsy Action’s most recent campaigns and details of how you can take part. Don’t forget to contact me if you would like further information about any of the campaigns mentioned.
Don’t forget to contact me if you would like further information about any of the campaigns mentioned.
If you would like any further information about any of the campaigns mentioned in this newsletter, please contact Michaela Miller on +44 (0)113 210 8877 or email mmiller@epilepsy.org.uk.
Focus on epilepsy awareness - National Epilepsy Week
This year’s National Epilepsy Week (NEW) will be taking place between 18 and 25 May. Epilepsy Action has decided to use NEW to highlight the lack of awareness about epilepsy that exists in our society.
During NEW we will be encouraging all of our supporters to help us educate more people about epilepsy to reach as many people as possible. We will be doing this through a number of activities, which we hope you can take part in. On Monday 19 May we released some surprising results of a recent survey of MPs about epilepsy.
We are asking as many people as possible to write to their local Member of the UK Parliament (MP) to request a meeting at their local constituency office during the Friday or Saturday of National Epilepsy Week or as soon as possible afterwards.We would be grateful if people living in England,Wales, Scotland, and Northern Ireland could write to their local member of the UK Parliament.
Template letters are available for you to send to your local MP to request a meeting. These can be accessed on Epilepsy Action’s website at www.epilepsy.org.uk/nationalepilepsyweek or through the contact details at the end of this newsletter. You can find the name of your local MP at http://www.theyworkforyou.com/ or at your local library.
Top tip for campaigning
When writing a letter to your local Member of Parliament (MP) try to keep the letter short, ideally no more than one side of A4. It also helps to write in your own words and make your letter personal.
Other NEW activities include:
- We are looking for nominations for the first ever MP “Epilepsy Action Award for Excellence.” This is an award that will be presented to MPs that you feel have gone the extra mile in helping you access better epilepsy services.
- Why not send us your views about your experiences of living with epilepsy in the UK and how you have been affected by a lack of awareness about epilepsy? A selection of views will be displayed on our website to help raise awareness of people about epilepsy and how it impacts on those with the condition.
- Tell your story: we are also looking for people who would be willing to tell their story to journalists. If you would be interested in taking part in interviews for National Epilepsy Week please go to www.epilepsy.org.uk/press/media-volunteers and complete the form with as much information possible or contact the Epilepsy Action press office on 0113 2108800.
Campaigns roundup
New guide to support role of epilepsy specialist nurses
A ground-breaking guide aimed at promoting the benefits of specialist nurses for the care of people with long term neurological conditions was launched on 1 May. The important document results from a unique partnership between Epilepsy Action, the MS Society, and the Parkinson’s Disease Society, with the Department of Health, Royal College of Nursing and NHS National Workforce Projects.
The document is aimed at commissioners and service providers for people with long term neurological conditions to help them offer the right service, delivered by an appropriate workforce, to meet patients’ needs. It outlines why services for neurological conditions are important, demonstrates the value of multidisciplinary teams and clarifies the contribution of specialist nurses.
The guide is being launched exactly one year on from a specialist nursing summit held on 1 May 2007 with Ivan Lewis, Minister for Care Services, which highlighted the vital role of specialist nurses in helping people with epilepsy, multiple sclerosis (MS), and Parkinson’s disease.
The guide, Long Term Neurological Conditions – A good practice guide to the development of the multidisciplinary team and the value of the specialist nurse, can be accessed at www.healthcareworkforce.nhs/neurology
Concessionary fares
Epilepsy Action is keen to find out whether people with epilepsy eligible for a free concessionary bus pass have been refused a pass or have had to wait a lengthy period to receive one.
Since 1 April 2006, all residents of England who are aged 60 and over and eligible disabled people have been guaranteed free off-peak local bus travel within the local authority area in which they live. From 1 April 2008, people over the age of 60 and disabled people in England are eligible for a free bus pass that entitles them to free bus travel on all local buses anywhere in England (rather than just within their local authority area of residence).
There are seven categories of disability under which a person can be entitled to concessionary bus travel.To get a free pass, people with epilepsy are classed as disabled if they would be refused a driving licence should they apply for one.
However, Epilepsy Action has received reports that a number of people with epilepsy have been refused a free concessionary bus pass, even though they are entitled to it. Others are having to wait lengthy periods of time for approval to receive a pass.
We are asking people to get in touch if they have been refused a pass or have experienced a lengthy delay before their application for a pass has been approved.We are also looking for people who would be willing to be interviewed by the media about these issues.
If you would like to contact us with your experiences please contact Michaela Miller, using the contact details at the end of this newsletter.
Vagus nerve stimulation (VNS)
Epilepsy Action has received reports that an increasing number of people in the UK are being refused vagus nerve stimulation (VNS) by their local primary care trust (PCT) because of the cost, even though they have been referred for the treatment by their consultant.
Vagus nerve stimulation is a treatment for epilepsy where a small generator is implanted under the skin below the left collar bone. This is connected to a lead with three coils at one end. These coils are wrapped around the vagus nerve in the left side of the neck in a small operation.The VNS stimulates the vagus nerve at intervals to reduce the frequency and intensity of seizures.
Epilepsy Action would like to find out how big a problem this is and how many people have been refused VNS treatment because of the cost.We would like to hear from you if you have been refused VNS treatment by your local PCT after being referred for the treatment by your consultant.
If this applies to you please contact Michaela Miller using the contact details at the end of this newsletter.
Impact report
Epilepsy Action has recently launched its first ever Impact Report. The Impact Report gives an overview of the work that Epilepsy Action carried out in 2007 and the impact of this work on the lives of people with epilepsy. If you would like to see the report please visit Epilepsy Action’s website at www.epilepsy.org.uk/impact or contact Liz Champion on 0113 2108800.
If you would like any further information about any of the campaigns mentioned in this newsletter, please contact Michaela Miller on +44 (0)113 210 8877 or email mmiller@epilepsy.org.uk.
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