AN ADVERTISING INSERT BY MEDIapLANET No.2/June ’10 EPILEPSY 4 STEPS UNDERSTAND THE REALITY Keeping it in the family: Funny man Russell Howard, whose younger brother Daniel has epilepsy, shares his family’s experiences on and off the stage. Another way Plain sailing See how diet Why the right could make a environment is difference essential ARPAD NaGY-BAGOLY NYCPE PHOTO: PETE DADDS 2 · JUNE 2010 AN ADVERTISING INSERT BY MEDIAPLANET CHALLENGES Epilepsy is commonplace but still too often misunderstood. Scientific research and development of treatment is key but so too is raised awareness and a lack of stigma - attitudes to WE RECOMMEND Not held back epilepsy must be based on fact not fiction. Russell, Daniel and Kerry Howard share their stories on dealing with epilepsy as a PaGE 14 family. Get the facts - know the truth “My brother’s managed to turn something that his week is National perform at their best. was really bad in my life Epilepsy Week. Around into something that is half a million people in A need for adaptation good and out there.” the UK have epilepsy. Epilepsy can affect anyone, of It is a complex, serious 3 any age and from any walk of neurological condition and chanc- life. Many people have epilepsy Tes are you will know someone who from childhood and we investigate has it. how families cope, as well as look- Despite this, awareness of epi- Sharon Wood General Secretary ing at a special diet that can treat lepsy among the public is low and it The Joint Epilepsy Council difficult-to-control epilepsy in chil- is not a priority for the health serv- dren. An aging population also ice. A 2007 report by the All-Party safely day-to-day. Comedian Rus- means that an increasing number We make our readers succeed! Parliamentary Group on Epilepsy sell Howard also gives a personal of older people are developing epi- concluded that poor health servic- account of growing up with his lepsy – we take a look at the unique EPILEPSY, 2ND EDITION, JUNE 2010 es lead to 400 avoidable deaths and brother, Dan, who has epilepsy. challenges this presents and how Country Manager: Willem De Geer Editorial Manager: Danielle Stagg £189m wasted, in England alone, the health service needs to adapt. Business Developer: Chris Emberson every year. A good quality of life We also look at what the future Half of all children with epi- holds for the next generation of Responsible for this issue A group effort 2 Project Manager: Hannah Butler lepsy underachieve at school. people with epilepsy, including the Phone: 0207 665 4414 1 The Joint Epilepsy Council of The results of a survey of teenagers, latest research and innovations in E-mail: [email protected] the UK and Ireland (JEC) rep- announced this week by Epilepsy diagnosis and treatment. Distributed with: The Guardian, resents 24 epilepsy charities. Mem- Action, reveal that while 72 per cent June 2010 bers of the JEC have contributed to believe their epilepsy affects their Print: Guardian Print Centre this supplement and we hope it will school work, only 39 per cent feel Mediaplanet contact information: Phone: 0207 665 4400 raise awareness of this often over- well supported at school. Fax: 0207 665 4419 looked condition. This supplement assesses the im- E-mail: [email protected] It gives an insight into living portance of education and life skills with epilepsy, including advice on for people with epilepsy, and how how best to manage the condition can they be helped to achieve and ‘Once in a while something happens to me Ways we can support you which really information scares other e-newsletter people’ forum A full life for helpline training everyone affected seizure management by epilepsy research expert care Concerned about epilepsy? For a free copy of our magazine Are you or someone close to , or to find out you experiencing seizures, Epilepsy Review more about any of the above, newly diagnosed or needing have a look at the website or call some support? We are here to help. our helpline, as below. www.epilepsysociety.org.uk Helpline: 01494 601 400 registered charity 206186 Mon-Fri 10am-4pm national call rate Discover ‘exemplary’ care at St. Elizabeth’s St Elizabeth’s Special School has this month behaviour and enriched self-esteem. been judged as “outstanding” by Ofsted following its recent inspection. The School One parent commented “I have nothing but near Bishops Stortford in Hertfordshire, is praise for the staff throughout the School. registered for up to 68 residential pupils and My child’s well-being and achievement is 12 day placements, (aged 5 - 19), for the 38 paramount and their positive support of us as term-time weeks of the year. School Principal a family is priceless”. Another parent reported Brian Sainsbury says “St Elizabeth’s provides “My son has only been at St Elizabeth’s since an excellent standard of care and support September and he is already like a different that helps young people in their educational, child, so much calmer and more fun to be personal, social and emotional development with”. and we are delighted at this validation of the quality of our services”. St Elizabeth’s Centre is part of a charity administered by the English Province of The School is part of St Elizabeth’s Centre, the Daughters of the Cross of Liège. Chief (which includes a specialist FE College Executive, James Connolly, adds “Ofsted and nearby adult Residential Care Home also graded the School as “outstanding” in with nursing), and has a long established the promotion of equality and diversity. We reputation for its expertise in epilepsy, but aspire to be a centre of excellence based staff learning and experience also equip the on Christian ethos of compassion, respect School to serve a wider range of complex and esteem for the unique value of each neurological conditions. individual, regardless of religion or race. The basic aim of all our services is to help enable The School is a regional and national centre especially vulnerable individuals to live life to of expertise in supporting and educating the full and achieve at their highest possible young people who have moderate or severe level. This excellent Ofsted report is great learning difficulties (MLD/SLD) or profound recognition for the efforts of our school staff and multiple learning difficulties (PMLD) or in working towards these objectives”. other neurological conditions which may have been caused or complicated by epilepsy, often with other associated disabilities. Pupils are often described with a range of difficulties including autistic spectrum conditions (ASC) and associated attention deficit hyperactivity disorder (ADHD) with language and communication needs or difficult to manage behaviours. Ofsted concluded that medical care is “outstanding”; pastoral care “exemplary”; arrangements for maintaining contact with families remains “excellent” and described boarding accommodation as “pleasant, comfortable and safe”. The extensive health For more information, or a brochure, please and therapy resources are a particular feature contact the School Admissions Ocer: of the service. Ofsted also praised the range Tel: 01279 844270 of activities enjoyed by young people and or email: [email protected] the motivation given towards improved or see our website at: www.stelizabeths.org.uk 4 · JUNE 2010 AN ADVERTISING INSERT BY MEDIAPLANET INSPIRATION Question: How can living with epilepsy be best managed to ensure a life enjoyed to the full? Answer: From making use of modern technology to keeping those around you informed, there is much that can be done to protect people with epilepsy from harm. How to live your best life including injury, Status Epilepticus and epilepsy, the risk of SUDEP will vary, says CHANGE Sudden Unexpected Death in Epilepsy Professor Brown: “This is why it is impor- ■■“Until recently few of us will have (SUDEP), points out Professor Stephen tant to understand your own type of epi- heard of anyone dying because of epi- Brown, consultant neuropsychiatrist, lepsy and how best to manage it.” lepsy - but national statistics reveal the Honorary Professor of Developmental There are many solutions – from main- shocking figure of more than 1000 people Neuropsychiatry at Peninsula Medical taining communication and decreasing per year in the UK dying because of epi- School and a Epilepsy Bereaved scientific stigma to employing the solutions such lepsy. Worse, good evidence suggests that advisor. as the iPhone epilepsy diary application 42 per cent of these deaths would be pre- “SUDEP is uncommon, but may affect ”Up to 70 to the new generation of sensitive alarms. vented by better medical care and treat- about 500 people with epilepsy in the UK per cent The most effective way of reducing risk ment,” says Professor Mark Richardson, each year – and current research suggests of people is to achieve complete control of seizures, Paul Getty III Chair of Professor of Epilep- that some may be more at risk than oth- diagnosed Prof Brown points out. “Up to 70 per cent sy, director of the Institute of Epileptolo- ers,” he says. “Risk factors include young of people diagnosed with epilepsy will gy, Institute of Psychiatry King’s College adults, generalised tonic-clonic seizures, with epilepsy not have seizures as long as medication London and scientific advisor to Epilepsy seizures at night / whilst sleeping; abrupt will not have is prescribed and taken correctly. Having Bereaved. and frequent changes in medication and seizures access to a specialist, receiving good care people whose epilepsy is not well control- as long as and support and having access to infor- Why understanding is key led.” medication mation to help informed decision-mak- “There have been major efforts to educate is prescribed ing are all important in achieving free- healthcare professionals about epilepsy Find the right management tech- dom from seizures”.