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HELPLINE NUMBER Please note the Helpline number has changed to 0800 228 9016
SEVERN BRIDGE WALK
Epilepsy Wales Volunteer India Moon, accompanied by Somer and John, had a very
successful sponsored walk 'all the way to England'! They were walking to raise
funds for more Awareness Raising in the Brynmawr area and although the total is
not yet known as money is still coming in it looks to be a fantastic success.
DIOLCH YN FAWR IAWN India, Somer & John!
MATTHEW'S FRIENDS FAMILY CONFERENCE IN EDINBURGH Matthew’s Friends and the Charlie Foundation are together hosting a Family Conference on Dietary Treatments for Epilepsy and Glut 1DS, to be held on Saturday October 9th at The Sheraton Hotel, Edinburgh, Scotland. In the 3 days preceding this meeting Matthew’s Friends are the organisers of the 2nd Global Symposium for Dietary Treatments and other Neurological Disorders for all concerned health-care professionals. Because of this we have been able to utilise noted international speakers to provide a unique programme for families to find out more about all dietary treatments including the ketogenic diet, to treat complex, uncontrolled epilepsies. The Family Conference is also ideal for schools staff, respite workers and carers to attend. A crèche is available. Family Conference http://site.matthewsfriends.org/index.php?page=global-symposium-2010-2 Professional global symposium http://site.matthewsfriends.org/index.php?page=global-symposium-2010 If you have any queries regarding the conferences please contact julie@matthewsfriends.org or call her on 07748800438.
GREAT RESULT - EPILEPSY AWARE AT THE WELSH ASSEMBLY Nerys Evans AM, Chair of the Cross Party Working Group for Epilepsy, hosted another fantastic turn out at The Senedd on Wednesday, 16th June, for the Epilepsy Aware at the Assembly. This event provided the opportunity for over 150 members of the three charities, Epilepsy Wales, Epilepsy Bereaved and Epilepsy Action, to meet their own and other Assembly Members to highlight epilepsy services in Wales. Professor Phil Smith, Epilepsy Unit, UHW spoke with great passion about the recently launched Managed Clinical Network and Epilepsy Specialist Nurse Vicki Myson from UHW addressed the issues, concerns and importance of implementing the Epilepsy Service Directive, published by the Welsh Assembly in March 2009. It was a wonderful opportunity to speak informally with members of the Welsh Assembly who listened with great interest to many of the stories, some good, some not so good, about the various degrees of epilepsy services received throughout different parts of Wales. On behalf of all the members of Epilepsy Wales who attended we would like to thank the 26 Assembly Members who joined us for a ‘working lunch’. They are now all more aware of a condition that still needs more public awareness and, as long as we keep highlighting the need of specialist services, we will improve the epilepsy services in Wales. If you came along on Wednesday, thank you for giving up your time, without your attendance the event would not have worked – so WELL DONE YOU!
TWO FANTASTIC ANNOUNCEMENTS TO START NATIONAL EPILEPSY WEEK Epilepsy Wales would like to offer its sincere congratulations to Jane Hannah, Epilepsy Bereaved, on being awarded the OBE in the honours list. Knowing Jane, this award will be accepted on behalf of all the staff and volunteers at Epilepsy Bereaved. We would like to join with the individuals and families who have sadly had to contact Epilepsy Bereaved over the years in thanking the organisation for the unique support offered to anyone who has been bereaved through an epilepsy related death. This award could not have come at a better time as we celebrate National Epilepsy Week and have the opportunity of raising the profile of a condition that affects about 23,000 people in Wales, and is responsible for about 50 deaths in Wales each year. Llongyfarchiadau Jane, congratulations Jane and all at Epilepsy Bereaved from Epilepsy Wales. And Llongyfarchiadau to our Celtic colleagues at Epilepsy Connections, who have been recognised as one of the Top 5 charities in Scotland. Epilepsy Connections was formed in 2000 and provides information and support to people with epilepsy, their families, friends, and run a variety of projects within the Greater Glasgow & Clyde and Forth Valley Health Board areas. This is a wonderful achievement for a young charity, and a fantastic profile for epilepsy. Well done to all staff and volunteers.
EPILEPSY FUND FINDS TREASURE Gwent Detecting Club held a special weekend rally in order to raise funds for Epilepsy Wales. Epilepsy is not as uncommon as people think, affecting 1 in every 131 people, and so while talking to members of the Club it was no surprise to learn that four members are directly or indirectly affected by epilepsy. It was this revelation that decided them to donate one of their rallies to the charity Epilepsy Wales who support people with epilepsy, their families, friends and carers. The rally, held at the historic village of Much Marcle, raised a staggering amount, and at the presentation evening it was young Kiera (left) who was given the honour of presenting a cheque for over £1,000 to Lesley Morris of Epilepsy Wales.
EPILEPSY WALES - IMPACT AWARD SUCCESS Epilepsy Wales was delighted to be recognised by the prestigious IMPACT AWARDS, funded by GlaxoSmithKline and managed in partnership with The King’s Fund. The IMPACT Awards have been running since 1997 and are designed to recognise and reward charities that are doing excellent work to improve people’s health. This major annual Award is most highly regarded in the medical profession and to be recognised by the judges is a reward in itself. Chair of Epilepsy Wales, Ella Charlton, commented, “It is wonderful to see that the hard work of our staff, volunteers and trustees has been acknowledged. Epilepsy Wales is committed to supporting people with epilepsy, their families and carers. Should we be successful in receiving a financial award, this will help ensure our work of support, training and raising awareness of epilepsy will continue to improve the services for people with epilepsy in Wales.”
CARDIFF SUPPORT GROUP Do you know anyone with Epilepsy? Would you like information or support on living with epilepsy? Epilepsy Cardiff will now meet every 4th Thursday of the month at the Friends Meeting House in Charles Street, Cardiff between 10.30 am and 12.30pm, starting March 25th, 2010. It is very informal and no appointment is required. You can find the Friends Meeting House down the side of M&S. For further information please contact: Lesley Morris Tel: 029 2075 5515 or email: epilepsywales@aol.com
EPILEPSY The Essential Guide - Louise Bolotin
Reviewed by: James H., Cardiff, who has epilepsy himself The book contains a variety of related issues to epilepsy - from what it is, to the medical facts, to the daily implications of living with epilepsy. The book was written in a manner which was easy to understand. The definition of epilepsy which was given in the introduction was simple, but explained a lot and the book contained some useful tips in regards to the subjects which were raised. It was also interesting for me to look at a wider scope of the epilepsy which exists, to see how other people can be affected in various ways. A relative who read the book said that she found the book interesting especially with regards to some of the issues related to my experience of epilepsy. I would give the book top marks & will be interested enough to buy myself a copy when it becomes available. And what else you need to know:- Epilepsy – The Essential Guide Price: £8.99 Page count: 134 Chapter headings: Introduction, Epilepsy – The Basics, First Aid and Mortality Issues, Treatments, Managing Your Epilepsy, Travel Issues, Women and Parenthood, Children with Epilepsy, Teenagers, Working Life, Rights and Welfare Benefits, Help List, Book List, Glossary. ISBN Number 978-1-86144-063-1 Website: www.need2knowbooks.co.uk/shop/detail.asp?id=29&title=Epilepsy - The Essential Guide (To open this link please copy the address into your web browser)
FURTHER NEWS ON THE AUTOMATIC SUBSTITUTION OF GENERIC MEDICINE Epilepsy Wales is continuing to receive calls from clients concerned by the news that pharmacists will be allowed to dispense generic drugs in place of branded drugs. The Department of Health (DoH) has announced that there will be a public consultation on this, but earlier this month Epilepsy Wales wrote to the Department of Health to ask for more information. This reply was received from the Customer Service Centre, DoH. The savings to the NHS that will be delivered by the 2009 Pharmaceutical Price Regulation Scheme (PPRS) will be, in part, delivered by the implementation of generic substitution. The final PPRS agreement makes it clear that these proposals are subject to discussion with affected parties and that provision will be made to allow the prescriber to opt out of substitution where, in his clinical judgement, it is appropriate for the patient to receive a specific branded medicine. In these circumstances, the named brand must be dispensed. Provision may also be made to exclude certain categories of medicines for clinical reasons in the interests of patient safety. The Department recognises that this is a very complex issue, especially with regard to anti-epileptic drugs, and the Department is currently refining its proposals for the implementation of generic substitution. As you are aware, there will be a formal consultation on this issue in the autumn. I can assure you that patient safety will be paramount in taking these proposals forward. As you may be aware, it has long been the Department's policy to encourage generic prescribing where possible, for reasons of good professional practice and because of the opportunities for more effective use of NHS resources. However, the Department is aware that there are circumstances in which this may be inappropriate and relies on clinicians to ensure patients are prescribed the most suitable product. Currently, there is nothing to prevent the prescribing of a particular brand of a drug (or brand of generic), if the prescriber considers it essential for the patient to receive a specific product. This position will need to be maintained under any new proposals made as part of the current work on generic substitution. September 2009
AUTOMATIC GENERIC SUBSTITUTION OF MEDICATION There has been some concern over a recent report that the Department of Health are planning on making it legal for pharmacists to dispense generic drugs over what may be written on a prescription for a ‘branded’ name of drug. Edwina Hart AM MBE, Minister for Health and Social Services, has advised the following: “My officials are currently liaising with colleagues in the Department of Health (DoH) which has confirmed that they are planning a public consultation on this issue which DoH hope to undertake in the autumn. As far as the Welsh Assembly Government is concerned no decisions on exclusions have been made yet. In considering the matter we will be taking into account the effect on patients, National Institute of Health and Clinical Excellence (NICE) advice, Royal Pharmaceutical Society of Great Britain guidance and the outcome of the DoH consultation”. Epilepsy Wales will follow this public consultation, and will, via this web site, be asking clients to respond to the public consultation at the time. Please check out the web site regularly for further information and advice regarding this important decision. Generic medicines have the same active ingredient as the branded medicine. However, they are not always identical to the branded medicine. The amount of drug that finally reaches the site of action is known as the ‘bioavailability’. The bioavailability is what determines how effective the medicine will be. This bioavailability can vary between branded and generic medicines, and between different generic medicines. The result of this variance could mean that too little drug reaching the target could lead to less effective treatment, but too much could increase side effects. Meanwhile, we would suggest that if you are concerned about the possible effects upon your epilepsy you may want to make sure that your GP specifies the drugs you are currently being prescribed, and that your pharmacy dispenses the medication as prescribed at this time.
EPILEPSY WALES SUPPORT / SELF HELP GROUPS There is no better way to find out about the day-to-day living with epilepsy than to come along to one of the 15 Epilepsy Support / Self Help groups we facilitate around the country. The groups are very informal - no appointment needed! The group will talk about last night's TV, the latest political scandal, and when they are ready, will talk about epilepsy. No one forces anyone to say or do anything - you can talk as much, or as little as you like. Or, you may just want to drop in and collect some literature and/or fact sheets on epilepsy, or stay and have a chat and a coffee. Check out the Support Group section of this site - and click on the group nearest to you. There you will find details of the Fieldworker who runs that group, and details of when/where it is held.
NEATH’S GOT TALENT ! The outright winner as far as Epilepsy is concerned is “These Wonderful Souls”, a group of talented young people and their families from Neath in South Wales who have come together to raise awareness of epilepsy. The inspiration came from Karen Orsborn who has epilepsy herself, diagnosed as a young child. Her 21 year-old brother Michael died suddenly of epilepsy. Karen engaged her children Kirsten (12 years) and Darren (17) and their friends Talia (14), Hayley (17) and Sean (16) to sing on the CD. The 5 youngsters know only too well how epilepsy affects families as they all have relatives with the condition. The CD was officially launched at a sell-out concert on 9th April in the Owain Glyndwr, Neath, and were invited along to the Welsh Assembly during National Epilepsy Week, where they met with 27 Assembly Members and over 150 people affected by epilepsy (see photo below).
The sleeve of the disc features contact details of all the main charities in Wales who work to raise awareness of epilepsy. Copies of this CD are available from Epilepsy Wales at a cost of £5 incl. p&p. It also available from Derrick's Music Store in Swansea. The playlist of the CD is as follows:- I’ll be there Hero I’ll never find another you Hallelujah Somewhere beyond the sea We’ve only just begun Somewhere Fields of gold The greatest love of all The way we were That’s what friends are for
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