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EPILEPSY AUSTRALIA – IN WALES Epilepsy Wales was delighted to host Graeme Shears , Chief Executive of Epilepsy Australia and Chairman of the Joint Epilepsy Council of Australia and Dr Christine Walker, Vice-President of Epilepsy Australia on the Welsh leg of their visit to the UK en route to the International Epilepsy Conference in Budapest. Our Australian colleagues showed great interest in the Welsh Directive for Epilepsy. They have asked us to keep them updated with regular reports on how this is going to support and improve services for people with epilepsy in Wales. Epilepsy Wales and Epilepsy Australia found that they had much in common with the problems they faced, not least the lack of understanding of epilepsy in the wider community. Following their visit to Wales Graeme Shears will be presenting a paper at the International Epilepsy Conference in Budapest. Fiona Kettell, Development Officer from Epilepsy Wales, commented that it was very important that all Epilepsy organisations and stakeholders (Local Authorities, Health Boards, people with epilepsy, etc.) worked together to promote the understanding of this very common condition.
LOCAL A.M. TO VISIT MONMOUTH SUPPORT GROUP Nick Ramsay, the Assembly Member for Monmouthshire has found time in his busy diary to come along to the July meeting (28/7) of the Epilepsy Wales Support Group. Nick has proved a strong supporter of the Charity and attended the recent Awareness Event at the Welsh Assembly where he met constituents and other supporters and we are looking forward to his visit. The Group meets on the 4th Tuesday of every month at The Bridges Community Centre in Monmouth between 10.30-12.30 and is a very friendly and informal group. New members are always welcome so if you'd like to come along & meet Nick Ramsay over a coffee please contact Olli Rees on 029 2053 0946 or email epilepsywales@fsmail.net
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
LOTTERY GRANTS EPILEPSY GROUP A SUMMER HOLIDAY Congratulations to the Port Talbot support group who have been awarded £5,000 of lottery funding. Members of Port Talbot Epilepsy Group applied successfully for an Awards For All (Wales) grant to help pay for a summer holiday. Aberavon MP Dr Hywel Francis, who is president of the group, presented the cheque outside his constituency office. He said: “The Port Talbot Epilepsy Group is an outstanding local carers organisation and I am delighted it has won this award which will help many members have a well-deserved summer break. “I will be helping raise additional funds to ensure as many as possible will benefit.” The group is celebrating its 10th anniversary later and has more than 40 members who meet every Monday at Dalton Road Community Centre, Port Talbot, 11am-2pm, and the last Wednesday of each month, 6.30pm-9pm. For more information call 01639 897835 or 01639 823748.
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. 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
EPILEPSY AWARENESS WEEK INTERVIEW ON RADIO CYMRU This is a link to the news on the Radio Cymru website, which contains an item in Welsh on the Epilepsy Awareness Week; the part about epilepsy begins around 52mins in. John Flynn is one of the speakers http://www.bbc.co.uk/iplayer/cy/episode/b00kjk5p/Post_Cyntaf_20_05_2009/
WERE YOU THERE? Did you join the 26 Assembly Members at the Welsh Assembly on May 20th to discuss your views on epilepsy services in Wales? A fantastic number, nearly 150 people, did come along and enjoyed the company and sandwiches with their A.M.’s. Many Assembly Members admitted they knew very little, if anything, about epilepsy, and to hear the real-life stories, some incredibly harrowing, some with good news results, most just explaining the difficulty of living with a long term condition, did more to spark the interest in their A.M.’s than any leaflet drop we could have organised. So, if you did come along – many thanks, and well done to you. Now do follow up any issues with your Assembly Member, we have ignited the spark, we need to keep the issues of epilepsy in the Welsh Assembly agenda. We would like to publicly thank the Assembly Members who gave their time to come along, to those who sent their Representatives, and to those who advised that due to prior engagements they would not be able to attend. We had 30 Assembly Members present/represented – that’s a staggering 50% of The Welsh Assembly – who we are delighted to say now have a greater insight into the everyday lives of people with epilepsy. If you missed it this year – don’t worry – put May 19th 2010 in your diary now as we plan to do it all again next year. If you would like any information or advice, please do not hesitate to contact your local Fieldworker – details of whom can be found via the link on the home page.
TELEPHONE SUPPORT GROUP Epilepsy Wales is to benefit from a new initiative – a free Telephone Support Group – for those people who cannot, for whatever reason, get to a local support group. Community Network, the telephone conferencing charity, has been awarded a grant by Awards For All to help fund telephone support groups in Wales. These groups help those who, for whatever reason, are unable to attend ‘face-to-face’ groups but would still like the opportunity to have a chat, share information or exchange ideas once a month as part of an informal ‘get together’. What do I need? All you need is a telephone line and an hour to spare once a month for a chat! There will be no cost involved as all the calls will be paid for by the miracle of modern technology. What do I do next? At the moment we are registering people’s interests. Contact me, details below, and I will send you out a very brief questionnaire, or you can give me the details over the telephone or e-mail. This will ask for name, telephone number, and what day and time you would be available on a regular basis each month. I will then select the most convenient day/time for the majority of people – and register this with the telephone group. How does it work?: You will get a call from the organiser, Community Network, at no cost whatsoever to you, which will enable you to talk and listen to everyone on the line – just as though you were at a group meeting. You will be able to stay on and chat, or just listen, for as long as you like, or until we all say our cheerio’s until next month. Sounds Interesting? To find out more or to become involved please phone me, Olli Rees, at 029 2053 0946 or e-mail at epilepsywales@fsmail.net Spaces are limited so ACT NOW TO BOOK YOUR PLACE!!
QUESTIONNAIRE FOR WALES NEUROLOGICAL ALLIANCE Do you live in Mid Wales? The Wales Neurological Alliance would like your help in mapping the neurological services available in mid-Wales, to enable them to highlight any gaps, or lack of continuity etc., to the Welsh Assembly Government. Click on questionnaire if you would like to help.
EPILEPSY IN THE TEMPLE Clear vision, direction, and guidance on Epilepsy care in Wales was the basis of a ground breaking initiative and gathering at the Temple of Peace and Health in Cardiff. The initiative, the first of its kind in the UK, has been welcomed by Epilepsy Wales as it clarifies the guidelines for Local Health Boards and social care planners throughout the country. “The Assembly has taken Epilepsy seriously from the outset, and we are delighted to be part of the initiative” said Lesley Morris of Epilepsy Wales. The Directive is the result of several years planning and is aimed at providing the right management and delivery of services which will greatly improve the lives of people living with epilepsy. Health Minister Edwina Hart said: "Epilepsy affects thousands of people in Wales, and has a significant and long-term impact on the quality of people’s lives. "I am pleased that the Welsh Assembly Government is leading the way in improving the care and treatment for people living with epilepsy. "The Assembly Government is committed to providing better services that are more patient-centred, integrated across health, social care and voluntary sector organisations and delivered closer to people’s homes to enable them to live their daily lives more easily." Lesley Morris of Epilepsy Wales, who has been working with the Welsh Assembly Government said, “Epilepsy Wales is confident that the publication of this document will see a difference in the way people with epilepsy receive treatment – with shorter waiting times between appointments and a proper patient care plan that all care providers will adhere to.” Epilepsy does not receive a high profile – but it is the most common, serious neurological condition in the world. It affects 1:131 people – that is over 21,000 people in Wales, or simply put – when Wales take on Ireland on Saturday week there will, statistically, be over 560 people in the Millennium Stadium with epilepsy. As epilepsy is so common, why is it so hard to find people in the public eye willing to be a role model by standing up and saying, “I have epilepsy”? Epilepsy is frequently mis-diagnosed, by as much as 30%, though when correctly diagnosed up to 70% of people can achieve total seizure control. However, epilepsy could be responsible for up to 40 deaths a year in Wales as a result of SUDEP (Sudden Unexplained Death in Epilepsy). Epilepsy is a chronic condition, and deserves recognition, so many people with epilepsy will be waiting to see what effect this latest Welsh Assembly Directive will achieve. For further information please contact: Epilepsy Wales – telephone 01978 312 325 e-mail: epilepsywales@aol.com or weabradbury@btconnect.com
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