Epilepsy Action is campaigning to improve the quality of life for people with epilepsy.
What is Take Control?
The Take Control campaign aims to help people with epilepsy seek the best possible treatment.
Imagine you are 31 years old. You have the rest of your life ahead of you, until one day when you experience your first seizure. Suddenly, you are diagnosed with epilepsy and you have lost your confidence. You are afraid to do the weekly supermarket shop, you can’t drive any more, you thought epilepsy was a childhood condition, you know nothing about the condition and you are thoroughly exhausted. Michele Wilks, from Leeds, felt like this for about three years. That is until six months ago.
If you are a person with epilepsy, and you are not achieving the best possible control of your seizures, you may be putting your health at risk. Statistics show that better treatment could mean fewer seizures, and fewer or no side effects for seven out of ten people with epilepsy.
How do I take part?
To obtain your seizure diary, please register by calling our Epilepsy Helpline, on freephone, 0808 800 50 50;
Who is Take Control for?
Epilepsy Action’s Take Control campaign applies to 70 per cent of people with epilepsy, and the charity especially wanted to reach a disengaged population of people with epilepsy. That includes,those who knew nothing of Epilepsy Action or those not yet diagnosed with the condition. Many people do not realise that there are around 20 different types of epilepsy medications and that certain medications are better for treating certain types of seizures.
History of Take Control
Take Control was initially launched in 2004 during National Epilepsy Week, and was directly aimed at people with epilepsy, encouraging them to keep a diary of their seizures and to seek treatment reviews with their doctor.
In summer 2005, the campaign was re-launched, but this time it was aimed at pharmacists in Yorkshire and Lancashire who were encouraged to stock the campaign materials. So, instead of targeting people directly, we aimed to reach them through pharmacies where they went for their medication. This was hugely successful. Pharmacists loved it and we had a 70 per cent take up rate. Our ultimate aim for Take Control is to roll out the campaign nationally. However, before we do that it had to be fully tested.
So, having already tested two different approaches – one through patients, the other through pharmacists, we drew on what we had learned. When we launched Take Control in the north-east we knew that we needed to target people from different angles.
This third pilot was aimed at GPs and pharmacists, as well as people living with epilepsy. It was at this time that we also introduced a website.
We set a five month time frame to allow patients to register, complete the diary for six weeks, make an appointment with their doctor and complete an evaluation form.
Following the success of the north-east, we decided to trial it in the east midlands, Yorkshire, south coast and London during 2007. Take Control launched in the east midlands in March 2007 and Yorkshire during May 2007. Take Control was launched in the south coast region in January 2008.
In each area, we conducted a quality of life survey among our members and clients. Of the 186 people surveyed in the north-east in spring 2006, only 31.4 per cent were seizure free. Of the 193 people surveyed in the east midlands in January 2007, only 43.4 per cent were seizure free and of the 301 people surveyed in Yorkshire in February 2007, only 29.6 per cent were seizure free. The surveys just proved how much work there is still to do.
We launched in each area with a heavyweight media campaign. We have managed to secure BBC television coverage in each region so far. We have used the feedback received from health professionals and people with epilepsy to ensure that Take Control evolves with people’s needs. For example, we have made improvements to the diary so there is more space. One of our continuing challenges is to motivate people to complete their diaries so we tried to help by emailing them a Take Control newsletter and sending text reminders. We even re-launched the campaign in the north-east to try and re-involve people.
We have had support from celebrities including Gary Lineker, Kevin Whateley, Su Pollard, Tom Smith, Jim Hooton and ITV’s Calendar presenters, Gaynor Barnes and Duncan Wood. We have also received support from over 20 MPs and health professionals.
The campaign has been a success so far. The north-east pilot was shortlisted for three public relations campaign awards – CIPR (Chartered Institute of Public Relations) Awards for Excellence, Golden World Awards and the SABRE (Superior Achievement in Branding and Reputation) Awards.
Take Control was recently awarded a Highly Commended certificate. The award was presented at the Ask About Medicines Award for Excellence at Portcullis House, Palace of Westminster, London on 28 June 2007. Take Control was entered into the 'Excellence in improving communications between healthcare professionals and patients or medicine users' - the most popular category for entries this year.
So, although Michele has been through hard times with her epilepsy diagnosis, several adjustments have now been made to her medication. A few months ago her dosage was changed again and she has been seizure free for around six months. Her quality of life has improved and she has regular appointments with her doctor every six months.