The 2010 Campaign Supporters’ Group survey

Last year we asked Campaign Supporters’ Group members for feedback on campaigning topics and to tell us what was important to you. We asked you to rank nine campaigning areas in order of importance. These were:

• Healthcare
• Education
• Women's issues
• Young people
• Older people
• Social care
• Employment
• Disability rights
• Issues affecting black and minority ethnic communities

We then asked that if we were to campaign on a single issue what it should be. We are trying to establish whether the work we are doing reflects the priorities of this group. We also want to know what we should change, if anything, about our campaigning priorities in future.

Healthcare was ranked head and shoulders above anything else and also appeared most when we asked you which single issue we should campaign on. This makes sense since everyone affected by epilepsy will have some experience of the health service, whether good or bad. You will hopefully already be familiar with some of our healthcare campaigning. These include the Epilepsy in England: Time for change report and subsequent campaign to improve services. We are also campaigning to save epilepsy specialist nurses through our Save our Sapphires campaign. As the NHS goes through extensive change, we have been busy responding to the various consultations launched by the government. We want to make sure that people with epilepsy are represented. I think it’s safe to say that healthcare issues will continue to be a top priority for us for a long time to come!

Education and disability rights came closely behind, more or less neck and neck. Our work in education is growing all the time and last year we launched the Edwards. These are our awards for education establishments that go the extra mile to support pupils and students with epilepsy. This resulted in Routes to Success, a booklet that showcases our Edwards winners as examples of good practice. Some of our lobbying work in education is done through the Joint Epilepsy Council of the UK and Ireland (JEC). For example, last year we attended a JEC-led meeting with the new Education Minister Sarah Teather MP to outline the issues of support for people with epilepsy in education. In 2011, we will continue to lobby government to recognise epilepsy as a condition that may cause special educational needs. We will also be holding our second round of Edwards and will continue to support schools, colleges and universities with our Positive Action in Education, Epilepsy Policy for Schools and Routes to Success resources.

Disability rights is an area that we have always campaigned on in one way or another. Our work in the past helped epilepsy to be recognised under the Disability Discrimination Act (now largely replaced by the Equality Act). In more recent times we have campaigned to challenge discrimination in specific areas, such as employment and education. Clearly there is still work to be done and we will be identifying and examining key areas for campaigning in the coming months. Further feedback on areas will be very welcome from you and our other campaign supporters – please contact us!

Next up was employment. Our last major campaign on employment was during National Epilepsy Week in 2007. During this campaign we teamed up with the Disability Rights Commission to condemn employer discrimination against people with epilepsy. This campaign was supported by the Trade Union Congress and the union Amicus (now called Unite). In theory, people with epilepsy are protected from discrimination by The Equality and Disability Discrimination Acts, but we aren’t naive enough to believe that problems don’t exist. We are planning further activity around epilepsy and employment in a special campaign coming up this year.

Social care was the fifth most important area of campaigning for you. Better integration of health and social care under NHS reforms and cuts to local council budgets mean that social care provision is likely to change. We are monitoring the changes and working closely with our partners in the Neurological Alliance and the JEC. We feel it is too soon to know for sure what the impact will be. But we will continue to update you on the work we are doing and how to take action in future newsletters.

Perhaps not surprisingly, issues affecting specific groups of people – women, young people, older people and black and minority ethnic (BME) communities – featured lower down in the overall rankings. However, this does not mean they are not important to you.

Last year, young people was the focus of National Epilepsy Week and we held our first family conference for young people with epilepsy and their parents. We hope to secure funding to hold two more family conferences in 2011.

We are currently running a rather quieter campaign about older people with epilepsy, which hasn’t required any public campaigning. We have been given funding to produce a guideline for geriatricians, which will be sent to all geriatricians early this year. We are also updating our guide for people who develop epilepsy in later life, which will be promoted as soon as it is printed.

Women’s issues are an important area for our campaigning work and we have run a series of successful awareness-raising campaigns in the past. In particular we work to raise awareness of issues around pre-conception counselling, support during pregnancy and issues that affect women going through the menopause. Our work in this area is important not just to women with epilepsy but also to any children they may have. In 2011 we will be shifting our focus from awareness-raising to lobbying. There won’t be a high-profile campaign as in previous years. Instead we will be looking for opportunities to influence public policy, guidance given to health professionals and new NHS quality indicators.

Our campaign work regarding epilepsy, culture, religion and ethnic background is really only just beginning. We know that our members share many similar experiences no matter what their personal beliefs or ethnic background. However, research has shown that some religious beliefs and cultural norms can create barriers when trying to access healthcare and support. Some people may experience isolation if they live in a community where health conditions such as epilepsy are not openly discussed. In 2011 we will be looking for opportunities to better engage with our members from a diverse range of backgrounds. We can then make sure that we appropriately represent all of the UK’s population with epilepsy, when we campaign for health and social change.

In conclusion

Thank you, we were very pleased with the feedback you have given us. Thank you all for taking the time to respond. We are generally confident that many of our main areas of campaigning match your own priorities. We recognise however that we need to look at some areas of concern and identify what we need to be doing. Your feedback reflects a lot of what we learned from our National Policy Forum, a series of forums that we ran at our conferences as part of last year’s diamond jubilee activity.

Perhaps most interesting was the answer to the question about campaigning on a single issue. Many of you named particular topics such as consistency of supply of drugs or training for school staff about epilepsy. Some of you named topics we haven’t covered before, such as support for carers, which we have also taken on board and will be looking into. However, a large number of people wrote down things that could generally be brought together under the heading ‘raise awareness of epilepsy among the general public’. We received the same feedback in our National Policy Forum sessions – our members and people with epilepsy want us to tell the world what to do if someone has a seizure and to break down stigma. So that’s exactly what we are going to do!