The Epilepsy Society have developed a tailored self-management programme for patients with epilepsy, their families and carers.
The Department of Health is funding this three-year project to raise awareness about epilepsy amongst hard to reach groups in north and east London, where there often is stigma surrounding the condition as well as little understanding or take up of medical services, resulting in many cases in emergency hospital admissions.
The project (running from March 2012 to March 2015) has introduced workshops amongst community and health groups to raise awareness, reduce fear and stigma, and to encourage access to local services.
The Epilepsy Society has also created both a tailored self-management programme and a service user forum for people with epilepsy. Alongside these they run stakeholder meetings in each of the 6 boroughs that help ascertain what local needs are.
A major highlight of the project is the production of a new video/DVD ‘All about epilepsy’ – divided into two parts: the first of which explains the condition, with seizures played by actors; and the second showing interviews with people with epilepsy or family members about their experience of living with the condition. It has translations into 6 languages – Bengali, Cantonese, Hindi, Somali, Turkish and Urdu.
Throughout the project the Epilepsy Society have worked with clinicians, neurologists and health organisations such as the Clinical Commissioning Group and Healthwatch. The culmination of the project will be one national and three regional dissemination conferences, followed by a report to the Department of Health on local needs and recommendations for service improvements.
The Epilepsy Society are inviting people to come to their conference to hear more about how they developed the tailored self-management and how they are setting up patient forums, along with other project findings. The conference details are:
- Midland Hotel, Bradford
- Friday 4th July
- 9.30am until 2pm
- The conference is free to attend and includes refreshments and a buffet lunch
They are holding three further events in the autumn:
- 3 October – Birmingham
- 17 October – Slough
- 23 January 2015 – London
For more information or to reserve your place at any of these events please email: firstname.lastname@example.org
This project was the base of a presentation given by Dr Sharmin Shajahan of the Epilepsy Society, at the PiF event on 5 June which looked overcoming barriers to accessing health information. The slides from the presentation can be viewed here.