Epilepsy Action is regularly asked by researchers to help with recruitment for research projects via our membership magazine 'Epilepsy Today', branches, online community and website. Before agreeing to publicise such projects all requests are thoroughly assessed to ensure that the research is genuine and will ultimately benefit people with epilepsy.

• Voice of childhood epilepsy
• Adolescents’ perceptions of communicating an interacting with health professionals and their satisfaction with their experience
• Have you been refused vagus nerve stimulation?
• Do you have a family history of epilepsy?
• Meeting the needs of family members who give care and support to an adult with a long-term neurological condition
• Vagus nerve stimulation (VNS) therapy study
• The role of illness representations and the experience of poor memory of people with epilepsy

The voice of childhood epilepsy

Are you a parent or carer of a child with epilepsy? If so, would your child be interested in sharing their experience of living with epilepsy?

The National Centre for Young People with Epilepsy is looking for contributions from children to be included in their new booklet, ‘’The voice of childhood epilepsy’’. Your child can write their own piece or have the help of a parent or carers. You should email your child’s story to info@ncype.org.uk or post to:

The Information and Education Service
The NCYPE
St Piers Lane,
Lingfield
Surrey
RH7 6PW

Or, if you would like more information, please contact Gill Gallagher on 01342 831338 or email ggallagher@ncype.org.uk

Adolescents’ perceptions of communicating an interacting with health professionals and their satisfaction with their experience

Sarah Todd, a postgraduate student at the University of Derby, is carrying out research into adolescents’ experiences of diagnosis and treatment of their epilepsy.

Sarah tells us that effective communication between the patient and a doctor can make a huge difference to the way a young person feels about their epilepsy.

As part of her research, Sarah would like to talk to young people with epilepsy, between 14 and 18. Sarah’s research has been given ethical approval by her university and the interviews will take place in your home, with a parent or carer present.

If you are a young person with epilepsy, or a parent or carer, and would like to find out more about taking part in this research, please contact Sarah on 07846 139778 or email S.A.Todd1@student.derby.ac.uk

Have you been refused vagus nerve stimulation?

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, campaigns and policy officer, on 0113 2108877 or email mmiller@epilepsy.org.uk.

Do you have a family history of epilepsy?

If the answer is yes and you would be interested in helping find a genetic cause for familial epilepsy, then at the Wales Epilepsy Research Network would like to hear from you. The research is based in Wales, but families across the UK can take part.

The purpose of the study is to find new genes that cause epilepsy. Senior Clinical Fellow, Dr Ann Johnson, tells us that it is hoped that the findings of the study will eventually benefit not only families with a history of epilepsy, but also individuals with epilepsy more generally.

To take part families must have four or more affected members, or have siblings who have epilepsy.

If you would like more information please contact Ann Johnson on 01792 295070, email j.a.johnston@swansea.ac.uk  or Carrie Hammond on 01792 602310, email c.l.hammond@swansea.ac.uk

Meeting the needs of family members who give care and support to an adult with a long-term neurological condition

As part of the National Service Framework for Long-term (Neurological) Conditions, the Department of Health have commissioned King’s College London to carry out research into the needs of carers.

Dr Diana Jackson is leading the study and would like to hear from people caring for an adult who has developed epilepsy following a brain injury. If you would like to take part, you will be asked to complete a postal questionnaire.

• More details

Vagus nerve stimulation (VNS) therapy study

Professor Richard Robinson, Emeritus Professor of Paediatric Neurology at Guy’s and St Thomas’ Medical School, is leading a study into the place of VNS in the treatment of children with epilepsy.

Professor Robinson tells us that if a child has not responded to the first two or three appropriate anti-epileptic drugs (AEDs), then the chances of the child responding to another AED is low. At this stage, other treatment options may be considered. These can include surgery, a ketogenic diet or VNS.

VNS is now an established treatment and studies have demonstrated that approximately 40 percent of people who have had this surgery have a worthwhile reduction in seizures. Recently the National Institute for Health and Clinical Excellence (NICE) has approved the use of VNS for children, but has emphasised that it should be carried out as part of a well audited service. This study is designed to evaluate the relative benefits of VNS therapy compared to further trials of anti-epileptic medication.

The study will be taking place at a number of hospitals in England and Scotland. If you feel that your child may be eligible to take part in the study, you may wish to discuss this with the person who treats your child’s epilepsy. Alternatively, you can contact Professor Robinson at the address below:

Professor R Robinson

Evelina Children’s Hospital

6th Floor, Sky

Paediatric Neurology

Lambeth Palace Road

London SE1 7EH

email: rrobinson60@hotmail.com

The role of illness representations and the experience of poor memory of people with epilepsy

In a new research partnership, Epilepsy Action and the University of Sheffield are investigating how people’s beliefs about their epilepsy influences the way they cope with any memory problems they may have. Katharyn Hall, a PhD research student at Sheffield, will be carrying out this research. We hope that the study will tell us more about the ways people adapt to living with epilepsy.

Katharyn would like to contact people with epilepsy (whether or not they have memory problems) to take part in a memory test. Participants should also have a relative, without epilepsy, who would be willing to take part in the study. The research will take place mainly in the Leeds/Sheffield area, but if you live outside this area you may still be able to take part.

If you would like to find out more about taking part in this important study please contact Katharyn on 0114 222 6507 or email pcp05keh@sheffield.ac.uk

Epilepsy Action is always pleased to support genuine research aimed at improving the daily lives of people living with epilepsy. If you are a researcher and feel that we may be able to assist you by helping with recruitment of participants, or in any other way, please contact Margaret Rawnsley research@epilepsy.org.uk or ring 0113 210 8800 (UK) or (+44) 113 210 8800 (International)

• Past invitations to take part in research