Photo: Pete dadds

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.

4StepS

epilepsy

Another way See how diet could make a difference

Plain sailing Why the right environment is essential

nycpeArpAd nAgy-BAgoly

No.2/June ’10An AdvertiSing inSert by mediAPlAnet

An Advertising insert by MediAplAnet2 · june 2010

Get the facts - know the truth

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 epilepsy must be based on fact not fiction.

This week is National Epilepsy Week. Around half a million people in the UK have epilepsy. It is a complex, serious

neurological condition and chanc-es are you will know someone who has it.

Despite this, awareness of epi-lepsy among the public is low and it is not a priority for the health serv-ice. A 2007 report by the All-Party Parliamentary Group on Epilepsy concluded that poor health servic-es lead to 400 avoidable deaths and £189m wasted, in England alone, every year.

A group effort

1 The Joint Epilepsy Council of the UK and Ireland (JEC) rep-

resents 24 epilepsy charities. Mem-bers of the JEC have contributed to this supplement and we hope it will raise awareness of this often over-looked condition.

It gives an insight into living with epilepsy, including advice on how best to manage the condition

safely day-to-day. Comedian Rus-sell Howard also gives a personal account of growing up with his brother, Dan, who has epilepsy.

A good quality of life

2 Half of all children with epi-lepsy underachieve at school.

The results of a survey of teenagers, announced this week by Epilepsy Action, reveal that while 72 per cent believe their epilepsy affects their school work, only 39 per cent feel well supported at school.

This supplement assesses the im-portance of education and life skills for people with epilepsy, and how can they be helped to achieve and

perform at their best.

A need for adaptation

3 Epilepsy can affect anyone, of any age and from any walk of

life. Many people have epilepsy from childhood and we investigate how families cope, as well as look-ing at a special diet that can treat difficult-to-control epilepsy in chil-dren. An aging population also means that an increasing number of older people are developing epi-lepsy – we take a look at the unique challenges this presents and how the health service needs to adapt.

We also look at what the future holds for the next generation of people with epilepsy, including the latest research and innovations in diagnosis and treatment.

Sharon Wood general secretarythe joint epilepsy Council

“My brother’s managed to turn something that was really bad in my life into something that is good and out there.”

Not held backrussell, daniel and Kerry Howard share their stories on dealing with epilepsy as a family.pAge 14

epilepsy, 2nd edition, june 2010

Country Manager: Willem de GeerEditorial Manager: danielle staggBusiness Developer: Chris emberson

Responsible for this issueProject Manager: Hannah ButlerPhone: 0207 665 4414E-mail: hannah.butler@mediaplanet.com

Distributed with: the Guardian, june 2010Print: Guardian print Centre

Mediaplanet contact information: Phone: 0207 665 4400Fax: 0207 665 4419E-mail: info.uk@mediaplanet.com

We make our readers succeed!

We ReCommend

ChallenGes

A full life for everyone affected by epilepsy Concerned about epilepsy? Are you or someone close to you experiencing seizures, newly diagnosed or needing some support? We are here to help.

Ways we can support you information e-newsletter forum helpline training seizure management research expert care

For a free copy of our magazine Epilepsy Review, or to find out more about any of the above, have a look at the website or call our helpline, as below.

registered charity 206186 www.epilepsysociety.org.uk Helpline: 01494 601 400

Mon-Fri 10am-4pm national call rate

‘Once in a while something

happens to me which reallyscares other

people’

For more information, or a brochure, please contact the School Admissions O�cer:

Tel: 01279 844270or email: schooladmissions@stelizabeths.org.ukor see our website at: www.stelizabeths.org.uk

St Elizabeth’s Special School has this month been judged as “outstanding” by Ofsted following its recent inspection. The School near Bishops Stortford in Hertfordshire, is registered for up to 68 residential pupils and 12 day placements, (aged 5 - 19), for the 38 term-time weeks of the year. School Principal Brian Sainsbury says “St Elizabeth’s provides an excellent standard of care and support that helps young people in their educational, personal, social and emotional development and we are delighted at this validation of the quality of our services”.

The School is part of St Elizabeth’s Centre, (which includes a specialist FE College and nearby adult Residential Care Home with nursing), and has a long established reputation for its expertise in epilepsy, but staff learning and experience also equip the School to serve a wider range of complex neurological conditions.

The School is a regional and national centre of expertise in supporting and educating young people who have moderate or severe learning difficulties (MLD/SLD) or profound and multiple learning difficulties (PMLD) or 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 and therapy resources are a particular feature of the service. Ofsted also praised the range of activities enjoyed by young people and the motivation given towards improved

behaviour and enriched self-esteem.

One parent commented “I have nothing but praise for the staff throughout the School. My child’s well-being and achievement is paramount and their positive support of us as a family is priceless”. Another parent reported “My son has only been at St Elizabeth’s since September and he is already like a different child, so much calmer and more fun to be with”.

St Elizabeth’s Centre is part of a charity administered by the English Province of the Daughters of the Cross of Liège. Chief Executive, James Connolly, adds “Ofsted also graded the School as “outstanding” in the promotion of equality and diversity. We aspire to be a centre of excellence based on Christian ethos of compassion, respect and esteem for the unique value of each individual, regardless of religion or race. The basic aim of all our services is to help enable especially vulnerable individuals to live life to the full and achieve at their highest possible level. This excellent Ofsted report is great recognition for the efforts of our school staff in working towards these objectives”.

Discover ‘exemplary’ care at St. Elizabeth’s

An Advertising insert by MediAplAnet4 · june 2010

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.

“Until recently few of us will have ■■heard of anyone dying because of epi-lepsy - but national statistics reveal the shocking figure of more than 1000 people per year in the UK dying because of epi-lepsy. Worse, good evidence suggests that 42 per cent of these deaths would be pre-vented by better medical care and treat-ment,” says Professor Mark Richardson, Paul Getty III Chair of Professor of Epilep-sy, director of the Institute of Epileptolo-gy, Institute of Psychiatry King’s College London and scientific advisor to Epilepsy Bereaved.

Why understanding is key“There have been major efforts to educate healthcare professionals about epilepsy and comprehensive treatment guidelines have been produced - but needless deaths continue,” says Prof Richardson.

People who continue to have seizures are more susceptible to potential risks

including injury, Status Epilepticus and Sudden Unexpected Death in Epilepsy (SUDEP), points out Professor Stephen Brown, consultant neuropsychiatrist, Honorary Professor of Developmental Neuropsychiatry at Peninsula Medical School and a Epilepsy Bereaved scientific advisor.

“SUDEP is uncommon, but may affect about 500 people with epilepsy in the UK each year – and current research suggests that some may be more at risk than oth-ers,” he says. “Risk factors include young adults, generalised tonic-clonic seizures, seizures at night / whilst sleeping; abrupt and frequent changes in medication and people whose epilepsy is not well control-led.”

Find the right management tech-nique for youGood management and full awareness is key – for the person with epilepsy and their friends and family to colleagues.

Just as there are many different types of

epilepsy, the risk of SUDEP will vary, says Professor Brown: “This is why it is impor-tant to understand your own type of epi-lepsy and how best to manage it.”

There are many solutions – from main-taining communication and decreasing stigma to employing the solutions such as the iPhone epilepsy diary application to the new generation of sensitive alarms.

The most effective way of reducing risk is to achieve complete control of seizures, Prof Brown points out. “Up to 70 per cent of people diagnosed with epilepsy will not have seizures as long as medication is prescribed and taken correctly. Having access to a specialist, receiving good care and support and having access to infor-mation to help informed decision-mak-ing are all important in achieving free-dom from seizures”.

How to live your best life

emily davies

info.uk@mediaplanet.com

change

”up to 70 per cent of people diagnosed with epilepsy will not have seizures as long as medication is prescribed and taken correctly.”Professor Stephen Brown

inspiration

A progressive, enabling, organisation dedicated to improving the life and experiences of people with complex needs.www.davidlewis.org.uk

Who do you want to be?While it may sound like a simple question, to the people we care for, it’s the start of an independent life; making the world we live in a more accessible place – whether its exploring and experiencing the fun of learning, or embracing the ambition to live and work within and as part of a community.

As the UK’s largest provider of care, education, assessment, treatment and life skill development for people aged 16 upwards with complex epilepsy, physical and learning disabilities and other neurological conditions, our specialist services are tailored to individual needs; ensuring each person has the chance to become exactly who they want to be.

Finding the right services, support and environment for your child or family member can be daunting. Which is why we encourage you to speak and meet with our dedicated liaison team. Contact us on 01565 640 002 or email: info@davidlewis.org.uk.

Progressive, enabling, and dedicated to improving the life and experiences of people with complex needs.

Registered Charity Number 1000392

An Advertising insert by MediAplAnet june 2010 · 5

little by littleGood condition management means epilepsy doesn’t have to stop young people living life to the full.Photo: NYCPE

inspiration

1 For many carers their first so-lution was to use a simple ba-

by alarm to listen for a tonic/clonic seizure. While many still do, there are now smarter, specialist devices.

2 Modern electronic epilepsy monitors sound an alarm if

movement happens too fast and for too long; some offer an integral ra-dio solution with a self-checking capability along with additional sensing for sound, breathing, uri-nation, vomit or collapsing

3 For sound, look for a system that responds to the sharp

sound bursts associated with a spasm while filtering out back-ground noise.

4 For urination note that plastic sensing sheets can cause false

alarms and are uncomfortable. Look for cotton sensing sheets which offer comfort, reliable detec-tion and can be used over pillows to detect vomit or excess saliva.

5 Consider systems that detect any changes in breathing.

6 A pressure mat sets an alarm if the user leaves the bed;

some only do so if the bed is vacant for too long.

7 Consider fall detectors which raise an alarm should the

wearer drop. SoURCE: DaviD GoDfREY, itS DE-

SiGNS

EXPERT TIPS ON TECNOLOGICAL ASSISTANCE

7

Are your clients with learning disabilities and epilepsy receiving the personalised treatment, care and support they need to achieve their full

potential?

Do you know what it feels like to have an epileptic seizure?

For in house epilepsy training courses and summer discounts quote MP1

Epilepsy Awareness Ltd : 01636 682888

: info@epilepsyawareness.co.ukwww.epilepsyawareness.co.uk

Registered Company No 7033444

Made in the UK

For further information, please call Alert-it care alarms on

0845 217 9952 or visitwww.alert-it.co.uk

Night-time and day-time assurance for carersA proven monitoring system with high integrity radio pagers, to detect bed movement, sounds, breathing problems, urination, vomitting or falling associated with epilepsy spasms

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An Advertising insert by MediAplAnet6 · june 2010

Twenty one-year-old Rohan is a qui-et, intelligent young man with a budding interest in photography.But when you talk to him about what life was like before he be-came a student at the National Cen-tre for Young People with Epilep-sy (NCYPE) it very quickly becomes clear that he’s come a very long way indeed.

“My old school wasn’t a good place for me,” Rohan explains. “I used to be kept away from the oth-er students and I had to spend break and lunch times near the staff be-cause of my epilepsy. I didn’t get to mix with anyone my own age and I had to stay in the medical room even after my seizures. I was the only one in my school with epilep-sy.”

Rohan wasn’t diagnosed with ep-ilepsy until he was about four years old. Since then, he’s been on 14 or

more different types of medication. As a result, he also has osteoporosis and is partially sighted in his right eye.

Despite being extremely isolated at his former school, Rohan was so keen to get his GCSEs that he stayed on there to study for them and sit the exams. He has the invaluable support of his parents, who have al-ways been very supportive, he says. “With their help, I even managed to get a B in photography.”

Rohan is a now a residential stu-dent at the NCYPE, which means that he lives in one of the on-site house during term time and re-turns home during the holidays. This enables him to both mix with people his own age and to take part in activities which he’s never had

the chance to do before.“I feel much more independent

here,” he says. “I’m included - I’m not different from anyone else.” “And being here has also helped me cope with my epilepsy better”, he points out: “I now do as much as I can for other students who have seizures. With the help of the staff here, I’m also learning to do my medication on my own - a really big step for me.”

Rohan’s confidence has grown so much that he’s currently attend-ing a mainstream college, alongside the courses he’s already doing at the Centre.

He’s already achieved a Level 1 Di-ploma in Digital Applications and is now undertaking a Level 1 Cer-tificate in Business Administration and IT. In addition, Rohan is also an-active member of the NYCPE’s Out-reach Group, a student-led initia-tive where young people from the college talk to the public about their experiences with epilepsy and what it’s like.

“I think that if you’re capable of being on a course, whatever your disability - you should be includ-ed and given suitable support to do what you want,” says Rohan. “That’s what I finally have achieved”.

Question:■■ How did one young person with epilepsy tri-umph over disability and isola-tion to achieve success and sat-isfaction?

Answer:■■ by persisting with his edication and pursuing the opportunities offered by a spe-cialist centre, rohan found re-ward and contentment.

emily davies

info.uk@mediaplanet.com

how i made it

The pursuit of happiness

bright young thinghaving the right support gave ronan the freedom to both explore and achieve.Photo: NcyPe

inspiraTion

Schools can go the extra MiLE for epilepsy:

monitor achievement and behaviour ■■

– epilepsy can cause changesinclude the child in activities and ■■

provide a ‘buddy’Liaise fully with parents and health ■■

professionalsensure staff are epilepsy-aware and ■■

trained to deal with a seizure ■■

Facts

! read more on the web:

www.ncype.org.uk

What are the main issues for ■■

people with epilepsy aiming for a fulfilled education and life skills?

! ”The lack of understanding about epilepsy in schools is

huge. Staff are insufficiently trained to support children, deal with seizures and deliver emer-gency medication.

Children are often exclud-ed from activities because the school feels it won’t cope if the child has a seizure. Peer groups can also isolate their classmates. Cognitively, children can suffer: epilepsy can cause memory prob-lems and the side effects of some medication can be severe.

Good communication is vital. Give the school as much informa-tion about seizures and medica-tion and epilepsy’s cognitive ef-fects as possible. Be pro-active to get support where necessary.

how can i ensure my child ■■

gets the most out of education and learning?

! ”Don’t overprotect. Encour-age the child and work with

the school to ensure they can do as much as possible. Keep absence due to hospital appointments to a minimum and provide an indi-vidual health plan to support your child if they have a seizure at school. Help them understand that an ambulance is not always needed. Often children just need a short rest and can then return to class.

What advice would you give in ■■

this area to those with epilepsy and their families?

! ”Be open about epilepsy. Learn about it and use your

knowledge to educate so that oth-ers understand as much as possi-ble. Remember that epilepsy is not who you are, it is only a small part of you.”

Question & answergill gallagherChildhood epilepsy information service Manager, nyCpe

find thE right EnvironMEnt

1StEp

The ketogenic diet is high in fat and low in protein and

carbohydrate and aims to sustain the state of ketosis, which occurs when the body principally burns fat instead of carbohydrate. Ke-tones (the residue left after the fat is burned) are concentrated in the blood and inhibit seizures - although exactly how is un-known.

When a child starts the diet the ratio of fat to protein and

carbohydrate combined are usu-ally set at 4:1.

The ketogenic diet has been around since the 1920s but

as anticonvulsants drifted onto the market in the ‘40s and ‘50s it fell into disuse.

The diet is usually started in hospital under the supervi-

sion of a neurologist, and devised individually by a trained dieti-cian.

sara garland, founder of the daisy garland’s best tips

an advertising insert by Mediaplanetan advertising insert by Mediaplanet june 2010 · 98 · june 2010

Epilepsy affects 1 in every 100 ■■children, according to the National Society for Epilepsy.

Most crucially, epilepsy is not a single condition - it is the ‘epi-lepsies’, for which there are many causes, points out Professor Helen Cross, the Prince of Wales’s Chair of Childhood Epilepsy at the UCL Institute of Child Health, Great Or-mond Street Hospital for Children and National Centre for Young Peo-ple with Epilepsy, and treatment must be on an individual basis.

Principal concerns in paediat-ric epilepsy are getting the treat-ment right and a child’s neurode-velopmental outcome, says Prof Cross. “Parents and children need to know that the aim of treatment is

seizure control,” she points out. “In the more difficult epilepsies it may be optimal seizure control. If we can diagnose the specific type of epilep-sy then we can give some indication of prognosis – for instance, will they come off drugs, what it means for learning, and so on.” First line treat-ment should always be medication, most of which have been found by accident to be anticonvulsants, she adds: “The problem is choosing the right drug for the type. 65 per cent

of children will respond to medi-cation or go into spontaneous re-mission - this leaves a third where seizures will continue, and it is in these children we need to look for alternatives.”

After a child has failed two drugs the chance of responding to a third is less than 10 per cent, says Prof Cross. Alternatives then include surgery, in a small number of chil-dren where seizures are coming from one area of the brain, and the ketogenic diet, a rigid, mathemat-ically calculated, doctor-super-vised high-fat diet which alters the body’s chemistry by simulating the metabolism of a fasting body. Ul-timately, a further option is vagal nerve stimulation, where a small

implant is placed. The ketogenic diet should be con-

sidered in all children who have failed to respond to the initial two anticonvulsants tried, says Prof Cross: “It can cause seizure freedom of more than 50 per cent in up to 40 per cent of children, and complete seizure freedom in 10 per cent. Fur-ther, medication may be weaned. There are certain metabolic condi-tions where fat cannot be utilised that need to be excluded first as the diet would be contraindicated; how-ever there are also metabolic con-ditions where the ketogenic diet would be the treatment of choice.”

emily davies

info.uk@mediaplanet.com

Question: Why is epilepsy in children such a particular concern?Answer: The facts of the condition itself and the potential effects means it’s often feared epilepsy can have on development and education.

Find the right solution For you

Prof Helen Crossgreat ormond street hospital

news

exPlore tHe AlternAtives

2steP

Photos: istock Photo

www.matthewsfriends.org

Matthew’s Friends,P.O. Box 191,

Oxted,Surrey. RH8 0WL

England, UK.

Telephone Helpline: 0788 4054811

THE specialists on Dietary

Treatments for Epilepsy

Focusing on ALL Dietary Treatments for Epilepsy for both children AND adults.

Providing Support, Education, Training and Research, ensuring provision ofcredible, up-to-date information for families AND healthcare professionals. Funding Ketogenic Dietitians within the NHS backed up by quality resourcesand professional support. The Matthew’s Friends specialist treatment andtraining centre opens in 2011. Working with leading medical specialists from the UK and around the globe—Edinburgh, October 9th 2010 provides a unique opportunity for families tomeet the experts, preceded by a 3-day professional symposium —see websitefor details.

√ Constantly Updated Website √ Busy on-line forum √ Medical Board of Top Experts √ 24 hour Helpline

“Matthew’s Friends provided our port in a terrible storm”

Lesley Coyne, Mum to Jonathon and Jennifer (pictured), both children have epilepsy.

An Advertising insert by MediAplAnet10 · june 2010

Why the future is bright

moving forwardTechnology such as mri scans are helping medical professionals understand how epilepsy affects the brain. Photo:Mark kostich

For epilepsy, groundbreaking new discoveries offer better opportuni-ties for management and greater quality of life than ever before.

Important new imaging tech-niques of epileptic activity with-in the brain continue to be a major focus at the National Society of Ep-ilepsy (NSE), alongside work in the field of genetics. The NSE’s genet-ics research team has made a recent breakthrough with the discovery of a new hidden cause for epilepsy – in a worldwide study doctors have found a genetic ‘hole’ which could explain why some people devel-op epilepsy when there is no other known cause such as a head injury.

“This loss of genes can be found in a broader range of types of epi-lepsy, not just the individual syn-dromes in which inheritance was

already thought to be particularly important”, says Professor Sanjay Sisodiya, head of the NSE’s genet-ics research team. ‘This is an im-portant finding which will lead us to a better understanding of epilep-sy and could point us in new direc-tions leading to much-needed new treatments.’

Important new imaging and mapping techniques to pin down the point where seizures occur in the brain also promise to open up new avenues in both adult and pae-diatric epilepsy.

“There are many areas moving forward fast, in particular that of finding an underlying cause - for instance, genetics research,” says Professor Helen Cross, the Prince of Wales’s Chair of Childhood Epi-lepsy at the UCL Institute of Child Health, Great Ormond Street Hospi-tal for Children and National Centre

for Young People with Epilepsy. “We hope this will lead to more targeted treatments, while advances in neu-roimaging may lead to increased numbers of children who may be suitable for surgery.”

The imaging of language with-in the brain using Magnetic Res-onance Imaging (MRI) has been translated to a clinical tool and is in regular use at the NSE’s Chalfont Centre, Buckinghamshire. This will help to predict the impact of sur-gery on the function of language and memory and enables the pa-tient to decide whether to under-go surgery; the next step will be to share this work with other centres.

The efficacy of treatments is an-other area in which it’s hoped inno-vation will make a difference. With the NSE’s use of Positron Emission Tomography imaging (PET), which visualises the entry of drugs into the brain from the blood, it’s hoped it may be determined why anti-epi-leptic drugs fail to control seizures in some individuals.

emily davies

info.uk@mediaplanet.com

ProfessorSanjay SisodiyaHead of genetic research, national society of epilepsy

neWs

keeP aSking queSTionS

3STeP

question:■■ What hope is there for new treatment and care in epilepsy?

answer:■■ From new tech-niques in diagnosis to the iden-tification of hidden causes, re-search and development are key to the future experience of epilepsy.

Two research projects led by ■■specialist nurses from the Na-tional Society for Epilepsy and the National Hospital for Neu-rology and Neurosurgery look set to promise to make a difference for people with epilepsy. A pilot project is looking at the benefits of a text messaging service to re-mind patients to take their medi-cations, while a second project is evaluating buccal midazolam as a rescue medication during pro-longed seizures.

In the US at the University of Minnesota Medical School, re-searchers have discovered that light from an ultraviolet diode (UV LED) reduced ‘seizure-like’ activity in a rat epilepsy model.

A mutation in a brain protein gene may trigger irregular heart-beat and sudden death in people with epilepsy, according to new research. Professor John Dun-can, NSE Medical Director: “This is an important finding, and may identify a subset of patients with epilepsy who are at high risk of a death from their heart stopping beating. Work at the NSE showed that some patients with refrac-tory epilepsy had occasions after seizures when their heart tempo-rarily stopped, and these patients were treated with insertion of a cardiac pacemaker. This new finding reinforces the suggestion that it would be important to look for occasional abnormalities of cardiac rhythm in those with re-fractory epilepsy, using implant-ed long term ECG recorders.”

News iN Brief

reseArcH

The future of epilepsy

The Meath is a specialist epilepsy provider and one of Godalming’s oldest charities, caring for over 60 adults who face complex epilepsy and other disabilities as part of their daily lives. We strive to support them in living life as fully as possible, in an environment as close to home as we can make it, with opportunities for the development of practical and creative skills. www.meath.org.uk

eagueInternational Dravet Syndrome Epilepsy Action

The voice for Dravet Syndrome

The IDEA League UK is the only charity in the UK dedicated to improving the lives of children and young adults affected by Dravet Syndrome. Dravet Syndrome is a rare neurological condition charac-terised by severe epilepsy that does not respond well to treatment. It begins in early infancy and can affect all areas of de-velopment, most noticeably speech and mobility. The course of Dravet Syndrome is highly variable from child to child and the seizures experienced are termed life-threatening due to their severity.

The IDEA League UK has 3 aims:1) To fund medical research into Dravet Syndrome and other related genetic sodium channel epilepsies

2) To raise awareness of Dravet Syndrome, and other related genetic sodium channel epilepsies

3) To support families affected by Dravet Syndrome, and other related genetic sodium channel epilepsies, emotionally, practically and financially

At this moment in time there is no cure for Dravet Syndrome and precious chil-dren are being lost to this catastrophic

condition. The IDEA League UK aims to work alongside other epilepsy charities and organisations to change that, while improving the lives of those affected along the way.

To Donate visit www.justgiving.com/idealeague or for more information visit our website www.idea-league.org.uk

The IDEA League UKThe Voice of Dravet SyndromeRegistered charity number: 1128289Email: marie.b@idea-league.orgTelephone: 07775 347234

An Advertising insert by MediAplAnet12 · june 2010

“We are seeing far more epilepsy in older people - principally because people are living longer than ever before, with brain damage that can ensue from strokes or degenerative disorders such as Alzheimer’s, caus-ing in some cases epilepsy,” says Dr John Duncan, Professor of Neu-rology in the Department of Clini-cal and Experimental Epilepsy at the UCL Institute of Neurology and medical director, National Society for Epilepsy.

Symptoms that often contribute to an epilepsy diagnosis, such as experiencing a blank spell or a fall to the ground could, in older peo-ple have a range of causes less like-ly in younger people, such as a heart problem, a side effect of medication, hypoglycaemia, or a simple fall or faint, points out Prof Duncan. The potential for misdiagnosis is com-plicated further by a lack of wit-nesses to an older person’s fall or blank spell if they live alone.

If diagnosis presents the initial

challenge, decisions on treatment must be made with close attention

to the individual, he says, with sim-plistic generic prescription of drugs

to be avoided at all costs. “It’s a big mistake to assume epilepsy and simply place an older person on drugs,” says Prof Duncan. “Firstly, because we might be missing some-thing else that is going on and sec-ondly, because anti-epileptic treat-ment can cause side-effects.” And with more than 20 anti-epileptic drugs to choose from, it’s now pos-sible to individualise treatment more than ever before, he adds – with fewer side effects on cognition and memory.

Considering the broad picture is key. Not only is an older person more likely to be already taking other drugs, to treat blood pressure, insomnia, arthritis and cholesterol for instance, but they can feel the side effects of epilepsy medication more acutely – and it’s therefore im-portant to not just prescribe careful-ly but to start with a very small dose, says Prof Duncan: “An 80 year old needs a smaller dose than a younger person and we always lean towards prescribing a more gentle drug for the elderly - it’s vital to consider the person in the round and according-ly tailor their treatment, from diag-nosis to medication”, he says.

Get the best results

bridging the generation gap.Statistics show a rise in the number of older people being diagnosed with epilepsy. Photo: absolut_100

emily davies

info.uk@mediaplanet.com

Epilepsy tends to be more common ■■

in older adults. More than 25% of peo-ple who develop epilepsy are over the age of 60.

The most common causes of sei-■■

zures starting over the age of 60 are cer-ebrovascular, which means changes or damage to the blood vessels around the brain.

Some people who have had a stroke ■■

may have one or more seizures.However this does not necessarily ■■

happen and in many cases seizures are not linked with strokes.

! Source:National Society for Epilepsy

FacTS

news

underStand the reality

4Step

Question:■■ What’s so im-portant to know about epilep-sy in older people?

answer:■■ epilepsy in old-er people is on the rise – and both diagnosis and treatment present particular challenges, with careful prescription need-ed.

Send this coupon Freepost to: Age Concern, FREEPOST EX2356, Ashburton, Devon, TQ13 7BR

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Personal Alarm ServiceYou never know when accidents might happen – so with Age Concern’s Personal Alarm Service, it is reassuring to know that friends and family are only a button press away.We offer a no obligation demonstration, and if you are happy with it, our professional installers can fit the unit there and then. Alternatively, if you buy online, your unit can be easily installed by a family member, a friend or yourself. Our Personal Alarm Service really does give peace of mind to both you and your family.Call now to book your no obligation demonstration* and quote the code below or buy online.

Freephone 0800 77 22 66 www.aidcall.co.uk/guardian

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All profitssupport our work with older people

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Quote code: AID0629

Supporting Epilepsy

GB.VPA.10.06.02

22024798_SA_Epilim Ad.indd 1 14/6/10 09:26:47

An Advertising insert by MediAplAnet14 · june 2010

“My brother’s man-aged to turn some-thing that was real-ly bad in my life in-to something that is good and out there,” says Daniel, grinning.

In performance Russell, a mainstay of BBC Two’s Mock The Week, might joke on stage about his little broth-er’s epilepsy - but away from the stage it’s a different story.

Two years older than Daniel, Rus-sell has been there from the onset of his brother’s epilepsy. As Daniel explains: ‘I started having fits as a result of a severe head injury when I was 10. Russell and I were cycling down a hill near our home when the lights came off Russ’s bike and got stuck in my front wheel. I went over the handlebars, over Russ and landed on my head.

“Of course that was more than 15 years ago and I wasn’t wearing a helmet - whenever I see some-one cycling without a helmet now, I shout at them to put one on. For a year after the crash I had really

piercing headaches and then the epilepsy started.”

Both Russell and Daniel’s twin sister, Kerry – another rising star from the remake of Reggie Perrin – have vivid recollections of find-ing their brother in the middle of his first seizure. “It was incredibly scary,” recalls Russell. Kerry agrees: “We had no idea what epilepsy was,” she says. “We all thought Daniel was going to die.”

“I have always felt a little guilty that the lights came off my bike,’ continues Russell, al-though he is quick to point out that his closeness to his brother has lit-tle to do with the impact of his con-dition. “Epilepsy is just a tiny facet of his personality,” he says. Kerry admits that Daniel’s seizures long ago turned her into an over-protec-tive sister - as children, her mission was often to protect Daniel from the physically exuberant Russell. “I would fret every time Russ and Dan had play fights,” she recalls. “I remember shouting at Russ, “Don’t

Why we keep smiling

It’s a funny thing, Daniel Howard’s epilepsy: in fact, it has people laughing across Britain. What makes Daniel’s epilepsy so hilarious? Daniel is the younger brother of the comedian Russell Howard - who Daniel trusts implicitly to share often intimate details of his seizures as part of his comedy act.

hit his head!”” Luckily, Daniel’s always been

tough - say his siblings. Kerry is convinced that had it been herself or Russell with epilepsy they would have been crushed by it. ‘We were a couple of big softies”, she says, ‘whereas Daniel was just so brave.”

‘I always consult Daniel before using any material about his epilep-sy in my gigs,’ says Russell - but em-phasises that any attempts to break down barriers and raise awareness of the condition are accidental. “I just do stuff that I find funny,” he says.

Russell also knows when the comedy must stop. During a re-cent gigs, a woman in the audience had a seizure. “I stopped perform-ing, came off stage and put the lady in the recovery position,’ explains Russell. ‘I put my coat underneath her head and made sure she was well looked after. Then after a break,

I was back on with the gig.”

“i always consult daniel before using any material about his epilepsy in my gigs”

sticking together

Russell, Daniel and Kerry ran the london marathon in April to raise money for the national society for epilepsy

Personal insight

The Joint Epilepsy Council of the UK and Ireland (JEC) is an umbrellaorganisation representing 24 epilepsy charities in England,Wales, Scotland,Northern Ireland and the Republic of Ireland. It provides the united voice of theepilepsy voluntary sector and campaigns for improved standards of, and accessto, integrated services for health, education and social care for people withepilepsy and their carers.

For more information about the JEC, including membership, visitwww.jointepilepsycouncil.org.uk or contact SharonWood,GeneralSecretary on 01943 871852, or email Sharon.jec@btconnect.com

JEC Member OrganisationsBrainwave – the Irish Epilepsy Association,The Daisy Garland, David Lewis Centre, Epilepsy Action,Epilepsy Bereaved, Epilepsy Connections, Epilepsy HERE,Epilepsy Outlook, Epilepsy Research UK, Epilepsy Scotland,Epilepsy Specialist Nurses Association (ESNA),EpilepsyWales, EpilepsyWest Lothian,Gravesend Epilepsy Network,International League Against Epilepsy (ILAE),Matthew’s Friends,The Meath EpilepsyTrust,Mersey Region Epilepsy Association (MREA),National Centre forYoung People with Epilepsy (NCYPE),National Society for Epilepsy (NSE), Quarriers,Scottish Epilepsy Initiative, St. Elizabeth’s Centre,Wales Epilepsy Research Network (WERN)

JEC AD FOR GUARDIAN SUPPLEMENT:Layout 1 8/6/10 13:43 Page 1

St Elizabeth’s Centre FREEPOST, Perry Green, Much Hadham, Hertfordshire SG10 6BR � 01279 844355 ■ Email: appeals@stelizabeths.org.uk

St Elizabeth’s Centre is administered by the English Province of the Daughters of the Cross of Liège. A registered charity 1068661 and a company limited by guarantee 3492921.

POSITIVE LIVING AND LEARNING FOR PEOPLE WITH EPILEPSY AND OTHER COMPLEX NEEDS

There is no government funding for such reinvestment and so our charity relies on the

generosity of its donors.

PLEASE HELP IF YOU CANwww.stelizabeths.org.uk

In September 2010 builders are expected to start work on St Elizabeth’s new and long-awaited Training Therapy and Vocational (TTV) building. Designed to replace a 70s-built Day Centre for adult residents and provide our young college learners with dedicated learning and vocational facilities all under one roof.

St Elizabeth’s has been leading the field for more than 100 years, offering children, young people and adults with profound epilepsy opportunities to enable them to live fulfilling lives.

Need the best care and support for adults with epilepsy?

Independence Homes has over ten years experience providing adults

with epilepsy and other neurologi-cal and physical challenges with 24

hour waking care and support. We support 100 service users in

community based supported living programmes and residential houses.

Our focus is on independence. We help each of our service users to ful-fil their potential and achieve their

ambitions. We focus on what people can do, not what they can’t do.

Our specialist staff includes highly trained support workers, a medical

team, and superb therapists. Contact our referrals team to discuss what we

can provide.

“�is has been a superb service for our daughter. She has developed both socially and intellectually... It has been excellent for her and for us”

We also offer three month medical assessments and respite

Call on 0845 390 1234 Visit our website at www. independencehomes.co.uk

A small change can make a big difference

I spent years seeking an effective treatment for my epilepsy. Together with my doctor we havebeen struggling to find the best combination of drugs. However, despite trying many differenttypes of medication, I always felt a sense of disappointment until my doctor introduced me toVNS Therapy.

Once the VNS Therapy device was implanted, I began to notice that my seizures were decreasingboth in terms of frequency and intensity. Now I feel more alert, more confident and moreindependent. Put simply, I can now go out and do things that I could only dream of doing beforeVNS Therapy.

The reality is that VNS Therapy has enabled me to enjoy those little things in life that most people take for granted. And this means that epilepsy no longer controls my life as it previouslydid – now I control my life.

Ask your doctor about VNS Therapy.It could be the first step towards a better life.This is the experience of one individual who tried VNS Therapy. Similar results cannot be guaranteed for other patients using this treatment.

Cyberonics Europe S.A./N.V., Belgicastraat 9, 1930 Zaventem, Belgium, Tel. +32 2 720 95 93, Fax +32 2 720 60 53, www.VNSTherapy.com

© 2009 Cyberonics, Inc. All rights reserved. Cyberonics® and VNS Therapy® are registered trademarks of Cyberonics, Inc.

EUROPEAN INDICATION FOR USE: The VNS Therapy System isindicated for use as an adjunctive therapy in reducing the frequency of

seizures in patients whose epileptic disorder is dominated by partialseizures (with or without secondary generalisation) or generalised

seizures, which are refractory to antiepileptic medications.

CONTRAINDICATIONS: The VNS Therapy System cannot be used inpatients after a bilateral or left cervical vagotomy. Do not use short-wavediathermy, microwave diathermy, or therapeutic ultrasound diathermy on

patients implanted with the VNS Therapy System. Diagnostic ultrasound isnot included in this contraindication.

WARNINGS: Physicians should inform patients about all potential risks and adverse events discussed in the VNS Therapy System Physician’s Manual

including information that VNS Therapy may not be a cure for epilepsy. Sinceseizures may occur unexpectedly, patients should consult with a physicianbefore engaging in unsupervised activities, such as driving, swimming andbathing, or in strenuous sports that could harm them or others. Patients

who have pre-existing swallowing, cardiac or respiratory difficulties(including, but not limited to, obstructive sleep apnea and chronic pulmonary

disease) should discuss with their physicians whether VNS Therapy isappropriate for them since there is the possibility that stimulation might

worsen their condition. The VNS Therapy System may affect other medical devices and other medical devices may affect the VNS Therapy System. MRI

can be safely performed; however, special equipment must be used.

ADVERSE EVENTS: The most common reported side effects fromstimulation include hoarseness, paresthesia (prickling feeling in the skin),

dyspnea (shortness of breath) and increased coughing. The most commonreported side effect from implant surgery is infection.

REFERENCES: Morris G.L. et al. Neurology 1999; 53(7):1731-1735 • Tatum W.O. et al. Neurology2001; 56(4):561-563 • VNS Therapy Patients Registry, April 25, 2003. Data on file, Cyberonics, Inc.

Houston, Tex. • Fromes G.A. et al. Epilepsia 2000; 41(7):117

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