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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 AWARE AT THE ASSEMBLY Following on from last year’s exceptional event at the Assembly – the date for your diary is WEDNESDAY 16th JUNE 2010. This is an Open Meeting held at the Welsh Assembly, in the Oriel, Senedd, Cardiff Bay, for anyone affected by epilepsy: whether it is yourself, a family member or friend, or whether you are a professional in the medical field, a care worker or simply someone who wants to improve epilepsy services in Wales. Last year we had 50% of the Welsh Assembly Members attending, a fantastic feat – this year, 2010, we expect to improve on it. Later in the spring we will be asking everyone to write to their AM’s, your invitation to your local AM is far weightier than ours, although we will also be writing to and lobbying the AM’s. This year it is of course vitally important to get your AM along, and for you to come along – or if you can’t travel to the Assembly, to send us your letter or note, for us to hand over. As the UK elections are likely to be held in May, we expect the newly elected MP’s to attend, again, it is only through your invitation they will turn up. Our own new First Minister and his cabinet have shown support to the epilepsy services in the past, particularly through Health Minister Edwina Hart’s publication last year of the Service Directive for Epilepsy. This year we need to ensure its implementation – and again, it is your feedback we need to file through to the Welsh Assembly – or is the Directive simply collecting dust on a shelf in some new local health board office?
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)
DISABILITY PRIDE - SATURDAY JUNE 12th, 2010 Disability Pride Partners:
Bobath Children’s Therapy Centre Wales,
Thursday December 3rd is the UN International Day of Disabled People. It is also the launch date of Disability Pride Cymru 2010. The media launch at Winter Wonderland Cardiff will be to raise awareness of next year’s event. Epilepsy Wales is a member of Disability Pride Cymru which is a partnership of most of the major charities and organisations working with and for people living with a disability in Wales. Disability Pride Cymru 2010 will be an inclusive fun-filled family festival celebrating the achievements of disabled people, recognising their contribution to society and challenging stereotypical views of many conditions, including epilepsy. At Disability Pride Cymru 2010 there will be bands and choirs, dance, sports demonstrations (with a star or two helping out), a fashion show, comedy, workshops, funfair rides, stalls offering information and advice, plus locally produced food and drink. This will take place in Cardiff’s Oval Basin on Saturday, 12th June 2010 and promises to be a great day out for everyone!
Cardiff Council Events Team is advising us and
we think that we can realistically expect at least 10,000 visitors on the day.
There is nothing else remotely like Disability Pride anywhere else in the UK, to
our knowledge. Ashley Martin - Projects Officer, Woodlands High School (Special), Cardiff e-mail: ashleymartin777@googlemail.com telephone on 07590443947 or (029) 2056 1279 or Lesley Morris – Epilepsy Wales e-mail: epilepsywales@aol.com
telephone: 029 2075 5515
EPILEPSY WALES SHORTLISTED FOR MAJOR IMPACT AWARD Education and awareness of Epilepsy services could receive a major boost in Wales. Epilepsy Wales has been short-listed for the prestigious Impact Award funded by GlaxoSmithKleine 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. 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.”
NEW GROUP FOR RHYL AND UPDATED DETAILS FOR LLANDUDNO GROUP For details see under Support Groups or click here:
DO YOU LIVE IN THE EBBW VALE AREA? Do you have epilepsy or know someone with epilepsy? If so, we are hoping to set up a local Support Group where people can drop in for a chat and a coffee whilst making new friends. If you are interested in joining or just finding out a bit more please contact: Olli Rees 029 2053 0946 or email epilepsywales@fsmail.net We look forward to hearing from you!
DO YOU LIVE IN THE BRIDGEND AREA? Do you have epilepsy or know someone with epilepsy? If so, we are hoping to set up a local Support Group where people can drop in for a chat and a coffee whilst making new friends. If you are interested in joining or just finding out a bit more please contact: Olli Rees 029 2053 0946 or email epilepsywales@fsmail.net We look forward to hearing from you!
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.
WHAT A MARATHON! London Marathon runner Lorraine Scott ran in support of Epilepsy Wales when she entered this year’s Flora London Marathon in April. It was Lorraine’s third successful entry into the event (although she says it may be her last!) and she undertook a gruelling training regime to prepare for the big day. Lorraine, from Bridgend, collected an amazing £1153.00 in sponsorship for her efforts which will be used to help continue the work of Epilepsy Wales across the country. Well done Lorraine and thank you (and all your sponsors) for your wonderful commitment to Epilepsy Wales! (If anyone else fancies following in Lorraine’s shoes (or trainers!) & carrying out a sponsored event please get in touch and we’ll support you all the way)
CAERPHILLY SUPPORT GROUP Do you live in or around Caerphilly? Come along to the new Caerphilly Support Group, which will be held every 3rd Friday at the Twyn Community Centre, Caerphilly, between 1.00 – 3.00m p.m. Dates of the next few meetings will be: Friday 19th June, Friday 17th July, Friday 21st August and Friday 18th September Very informal, come along and get information and advice, coffee and chat. If you would like to volunteer to help, or would like further information, please contact Pam Dandy, Epilepsy Wales, Tel: 029 20 88 1234 e-mail: epilepsywales@hotmail.co.uk
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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