This website is best viewed in Internet Explorer 8 or above. You are currently using an old version of Internet Explorer. Please click on this link to update your browser.

0808 800 2200

News archive

Control Transition Campaign

Our new campaign is pressing for services young people need as they move into adulthood.  More infomation on our new campaign can be found on this page.

European Written Declaration on Epilepsy Approved

A written Declaration on Epilepsy was passed in the European Parliament on 15 September 2011. This declaration was submitted by the European Advocates for Epilepsy Working Group in collaboration with Epilepsy Advocacy Europe, marking a significant step in the efforts of both groups to increase the quality of life of people with epilepsy. Check out the press release and Written Declaration.

Employment News

Read the speeches and listen to the speakers at our Scottish Parliament launch of the UK’s first Epilepsy and Occupational Health guide.

What's your Epilepsy IQ?

If you've a couple of minutes, why not try Epilepsy Scotland's quick online quiz? Who knows the interesting facts you may pick up doing this National Epilepsy Week activity. You can even make epilepsy a talking point in your work and home as you test your knowledge and tell others about it.

Being epilepsy aware makes life easier and safer for 40,000 people in Scotland with this common yet serious neurological condition. Go on, be our epilepsy champion for life, and not only for getting all the answers right. Details at www.epilepsyscotland.org.uk or call our Freephone helpline on 0808 800 2200.

Safe cracker wins precious iPad

If you want to join the growing number of devoted iPad fans and get one of your very own, join bidders at Epilepsy Scotland's Edinburgh Wags dinner in the Roxburghe Hotel, Charlotte Square on Thursday 10 March 2011 at 7pm.

One lucky person will buy a £10 safe key that opens the door to an iPad worth over £400.

Chief Executive Lesslie Young is delighted that Clicknetworks, an East Kilbride-based IT firm, has donated this prize to help raise funds for the charity.

She said: “It is going to be a fun-filled fundraising night for our 200 guests. I am grateful and encouraged by the generosity of people, even with the recession. Many fortunate winners will go home with fine prizes but only one can unlock a 'must-have' iPad."

Celebrities giving their time to take part in the Edinburgh Wags ‘Tears, Triumphs and Tiaras’ event include Radio Forth’s Grant Stott, Gordon Jackson QC, Jojo Sutherland, support act of Jenny Éclair and 4 Poofs & a Piano, professional snooker referee and Robert Burns enthusiast Hugh Brown and Tony Scott member of the Association of Speakers Clubs with 40 years experience of public speaking.

Unique workplace guide for epilepsy

From today, employers can use a free occupational health guide to help existing staff members or new recruits with epilepsy. This handy new resource covers legal responsibilities and how to handle the most common workplace issues.

Epilepsy Scotland Chief Executive Lesslie Young commented: “We devised this unique guide to make life easier both for those in HR/Personnel and employees who develop seizures. Our helpline callers repeatedly told us of organisations where working practices fell short of providing the best support possible. This prompted us to partner with occupational health experts in the public, private and voluntary sector and produce this practical tool for employers.

“This is the UK’s first occupational health guide to epilepsy. It showcases examples of good practice. The specific condition guide explains how a prompt and appropriate occupational health assessment, clear communications with an employee, and a customised risk assessment for their duties also benefits the organisation.

“Sixty years ago it was often difficult to find or keep a job if you had epilepsy or it was not well controlled. Epilepsy is no longer a reason to be excluded from the job market. We are delighted that the Society of Occupational Medicine sees this innovative guide as an enhancement to good practice. It is an honour to have the Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon as our guest speaker at tonight’s Scottish Parliament reception to highlight this guide.”

Teen guide to epilepsy

Many of us look back on our teen years and wonder how we got through it. Being a teenager today brings the wonders of IT plus the pressures of modern life. Now imagine the impact of being newly diagnosed with epilepsy at that age. Having this common, serious neurological condition may affect your self esteem, relationships, educational results and sense of wellbeing. Epilepsy Scotland cares about the hundreds of teenagers who develop epilepsy every year.

That's why we are launching our 'Guide to getting on with your life' on St Valentines Day 2011. It's been written by and for teenagers and has its own special micro website. Details at www.epilepsyscotland.org.uk or call our Freephone helpline on 0808 800 2200.

Let's have a celebrity laugh

Four well known and interesting faces will entertain Epilepsy Scotland guests at their annual Edinburgh Wags dinner on 10 March 2011 in the Roxburghe Hotel.

Hosted by award winning broadcaster Grant Stott 4 wannabe winning speakers include Gordon Jackson QC, Jojo Sutherland, Hugh Brown and Tony Scott. They hope to have the X factor that makes the audience pick them to lift the 8th Edinburgh Wags trophy.

Jojo Sutherland is a charismatic comedienne who regularly acts as support for high profile comics such as Jenny Eclair and 4 Poofs and a Piano.

Gordon Jackson has many a story to tell, having worked as a MSP and currently a QC.

Quick witted Hugh Brown is a professional snooker referee and Robert Burns enthusiast and a regular on the speaker circuit.

Tony Scott is a member of the Association of Speakers Clubs (ASC) and currently President of the Central District.

If you fancy a hilarious night out and do your bit for charity call 0141 427 4911 or visit www.epilepsyscotland.org.uk

Epilepsy rescue medication and your child

Epilepsy Scotland is hosting an anonymous survey about epilepsy rescue medication for children on behalf of Hayward Medical Communications. If you have a child who is prescribed emergency rescue medication for seizures (eg. buccal midazolam, rectal diazepam), please click here. The short survey takes about 10 minutes to complete and does not record any of your personal data.

* This survey has now closed.  Thank you to all who contributed.  We hope to have the data available in the near future and will announce this on the website. *

Learn Direct Scotland Learning Centre

Good news: Epilepsy Scotland has been recognised as an approved Learn Direct Scotland Learning Centre. This approval means that Epilepsy Scotland is now part of a national network of Learn Direct Scotland branded learning centres. Learners can be assured that the training courses that Epilepsy Scotland offers are in accordance with our Learn Direct Scotland “Pledge to Learners”.

Epilepsy Action First Aid Survey

Epilepsy Action is conducting a short survey before 12 August 2011 about the first aid experiences of people with epilepsy. Please visit www.epilepsy.org.uk/survey or you can ask for a survey form from the PR and campaigns team by calling 0113 210 8800.

Epilepsy Ambassador

Scotland international and Glasgow Warriors rugby player Graeme Morrison has a new role as our ambassador.

You can read the latest media coverage about our new ambassador Graeme Morrison here.

Epilepsy Scotland's Youth Worker wins again

We are delighted to announce that our youth worker, Zoe Reid has won a Silver Award for the sterling work she does with Epilepsy Scotland's youth groups. Zoe came second in the 'Youth Worker of the Year – Health Category' awarded by YouthLink Scotland. Last year, Zoe won the Barnardos and Marsh Trust Award for Outstanding Work with Children and Families.

Zoe stressed that the award was not just for herself: “I genuinely would not be getting awards if I did not feel inspired every day by the young people I work with and seeing them remain so positive”.

Ask the PM to support the Ten Minute Rule Bill on epilepsy

This Friday, 4 March 2011, is the second reading of MP Valerie Vaz's Bill. She is asking the UK Departments of Health and Education to meet the needs of children and adults with epilepsy. Specifically the Bill is calling for an epilepsy strategy.

You can email the Prime Minister this letter inviting him to make legislative time available so this Bill can become law. Remember to add your own reasons why this Bill should be supported by the Prime Minister at the very end of the letter. Then copy and paste it into the direct email for No 10 Downing Street: https://email.number10.gov.uk/ Read more about the Bill at www.publications.parliament.uk

A new Guide to Epilepsy and Occupational Health

Epilepsy Scotland has launched a new Guide to Epilepsy and Occupational Health, aimed at employers. The guide has been created by Occupational Health experts and makes life easier all round, for employees who develop epilepsy and for HR/Personnel.

The guide tells employers in practical terms what they need to know about epilepsy and the workplace and to help employers and employees get the most out of occupational health. It makes clear the legal responsibilities of employers and describes best practice measures to help employees with epilepsy have the best possible support.

Using our good practice guidelines towards people with epilepsy can help organisations to benefit most from their skills. Click to download/view the guide.

Are you ready for the Epilepsy Challenge?

This year's Scottish Parliament and local authority elections offer the chance to gain more support for epilepsy issues. We have prepared an Epilepsy Challenge. It asks four key things of decision makers: better care to help more people become seizure free, more epilepsy specialist nurses, joint council/NHS transition services for young people, and epilepsy awareness for all schools and the wider public. Read more about the Epilepsy Challenge and why not ask your local councillor or MSP to support it!

Calling all teenagers!

Epilepsy Scotland cares about the hundreds of teenagers who develop epilepsy every year. That's why we are launching our 'Guide to getting on with your life' this St Valentine's Day. It's been written by and for teenagers and will have its own special micro website. You can view the guide here or call our Freephone, confidential helpline on 0808 800 2200 to request your copy.

Scottish Parliament debates epilepsy awareness training

On 2 March 2011, Members of the Scottish Parliament debated epilepsy awareness training for student teachers. Epilepsy Scotland was pleased that epilepsy was brought to the attention of the parliament during this lunchtime debate. You can read the minutes here.

Epilepsy Scotland recognised by Quality Scotland

A Certificate of Membership of Quality Scotland has been awarded to Epilepsy Scotland, in recognition of our 'commitment to Business Excellence in Scotland'. We are currently working with Quality Scotland towards gaining 'Committed to Excellence' status in 2010.

This follows our recent recognition as Ambassador for Excellence 2008-2009 by Quality Scotland, for our 'continuous commitment and support in making Excellence a National Characteristic of Scotland'.

Committed to Excellence is a Europe-wide recognition scheme that was developed by the European Foundation for Quality Management (EFQM). Quality Scotland is the accredited body in Scotland for using and applying the EFQM Excellence Model.

Working for 'Committed to Excellence' status is evidence of our continued commitment at Epilepsy Scotland to our declared standard of 'striving to ensure effective working practices, through utilising externally accredited assessment of our standards and work practices'.


Journalist of the Year Award 2010

Our Journalist of the Year is Fiona Duffy. Her Scottish Daily Mirror feature highlighted a young woman's long journey to get a correct epilepsy diagnosis. It impressed the judges including our patron Baroness Veronica Linklater, TV and radio broadcaster Cathy MacDonald, Scottish National Union of Journalists Secretary Paul Holleran and BBC Scotland's Head of News and Current Affairs, Atholl Duncan. Runner-up Nan Spowart writing for the Herald was presented with her trophy by Chief Executive Lesslie Young. Read the winning article, watch the video of Fiona's acceptance speech.

Epilepsy in Later life: Guiding Good Practice

Throughout 2008 Epilepsy Scotland worked with a group of experts in producing a guideline for the diagnosis, referral and management of people in later life and epilepsy.

This guideline was reviewed by the delegates at a recent event that was specifically designed to gather feedback on this well needed document.

Epilepsy in Later Life A Good Practice Guide

Press release: Good Practice Guide - for Later Life Epilepsy Time Bomb

If you would like one or more copies of the guideline, please contact 0808 800 2200.


Pre-conceptual counselling for women with epilepsy

Pre-conceptual counselling could reduce potential health risks among babies of would-be mothers with epilepsy. Read our press release about a new study that suggests children born to women taking the anti-epileptic drug (AED) sodium valproate are more likely to have a lowered IQ at three years of age.

Developing an epilepsy-specific questionnaire

SallyAnn Wakeford, a PhD student at the University of Bath, would like to hear from adults with epilepsy who would be willing to complete a questionnaire. She wants to research how epilepsy affects the way we think and the way we behave.

New anti-epileptic drug

Pharma company Eisai have launched a new anti-epileptic drug, Zebinix (eslicarbazepine acetate). It is based on the drug carbamazepine, which has been widely used for many years. Zebinix is a once daily anti-epileptic drug, and can be prescribed for partial seizures as an add-on treatment for adults. If you want to find out more about this new drug, please click here.

Royal Society of Medicine Conference

Clinical Update: Epilepsy in childhood and adolescence

Being held on Thursday 26 February 2009 at the Royal College of Surgeons of Edinburgh, in association with The Muir Maxwell Trust. The conference aims to provide an update on some important issues of diagnosis and treatment for people with epilepsy. Some of the social and employment consequences of epilepsy will also be considered. The programme is intended particularly for all those working in epilepsy clinics, general physicians and general practitioners, and also for general neurologists and trainees. Book online at www.rsm.ac.uk

Childhood epilepsy drug now approved for NHS use

The Scottish Medicines Consortium have now agreed that Rufinamide (Inovelon) will be added to the list of acceptable drugs for childhood epilepsy. It is now available on NHS prescription.

Epilepsy Scotland submitted a patient group report to support this. Rufinamide is the first drug of its kind available on the NHS. It has been developed as, an add-on drug, for children with Lennox - Gastaut Syndrome (LGS) over the age of four.

Recent research has shown that it can greatly reduce the number of seizures that children with LGS experience daily.

Vagal Nerve Stimulation: from both sides of the border

13 February 2009 from 6.30-8.30pm Teacher Building, Glasgow

The aim of the seminar is to discuss VNS as a treatment option and investigate possible reasons for the difference between the number of people offered and fitted with VNS here in Scotland in comparison to England. A clinician from both sides of the border will present their experience of VNS. Richard Roberts a Consultant Neurologist from Ninewells Hospital in Dundee will discuss VNS in Scotland and Richard Selway a Consultant Neurosurgeon from Kings College Hospital in London will discuss VNS in England.

Interactive website for young people with epilepsy

Are you over 16 or in your 20s?
Would you like to share your story and experiences of epilepsy?

YouthHealthTalk.org (YHT) is an interactive website about young people's experiences of different health issues. The website has interviews with young people about their experiences of particular conditions, shown as video, audio and written clips. The website has also reliable information about the conditions, FAQ and links to other websites and resources.

www.youthhealthtalk.org

Ring chromosome 20 syndrome

Do you have ring chromosome 20 syndrome? Or do you know someone who does? If so, you may be interested in two different research projects that the Ring Chromosome 20 Foundation is funding.

Success - simpler steps for bus pass!

Thanks to campaigning by Epilepsy Scotland and specialist nurses Transport Scotland have changed the current system making it even simpler for people with epilepsy to get their free bus pass.

Form NCT003 (Certificate of Eligibility - Epilepsy) has now been amended so that GPs and Epilepsy Specialist Nurses can sign it as well as consultant neurologists. Previously, the form could only be signed by a neurologist. This caused problems for people who did not attend an epilepsy clinic.

We can send you both the application for a free bus pass form, as well as the newly amended NCT003 form.

Newsletter Archive

Here are back issues of Epilepsy News. If you want more information about anything from a back issue, please contact our helpline staff on 0808 800 2200 or email: enquiries@epilepsyscotland.org.uk

Newsletter issue 15Newsletter Issue 15

Features include details of innovative services developed by NHS Grampian Epilepsy Specialist Nurse Sheena Bevan. Dr Freddie Westbrook explains how Occupational Health assists people with epilepsy and employers. There is information by Professor Ian Bone about epilepsy and the law. The Scottish Sun Chief Features writer Matt Bendoris shares his family's story and why he ran a marathon for Epilepsy Scotland. You will find details of plans for pharmacists to dispense generic drugs in 2010 and our campaigning work to ensure people with epilepsy continue to receive the same medication.

Newsletter issue 14Newsletter Issue 14

Features include Paul Scott's personal story 'Keeping your wellbeing in mind' and an update on young Millie Mackenzie's progress after surgery. There is also information from Rod Duncan about epilepsy surgery and an Epilepsy in Later Life Good Practice Guide.

 



Newsletter issue 13Newsletter Issue 13

Features include five-year-old Millie's lifeline surgery in London. Her mother Kelly explains what led to this decision. Recently diagnosed Cathy Peattie MSP shares how living with epilepsy has impacted on her life. There is also information on the ketogenic diet and our campaign for more epilepsy specialist nurses.