Updated 15th October 2013
2nd December 2013
The Epilepsy Nurse Specialist Paul Turner who formerly took epilepsy clinics at the Queen Elizabeth the Queen Mother Hospital in Margate is now a Sapphire Nurse in Scarborough nd has fromnted the Epilepsy Action Christmas Appeal please see this appeal and contribute if you can. To see it click here
The last chance to buy Christmas Cards locally for the three charities we support in this way Epilepsy Society, Epilepsy Research UK and Young Epilepsy is at Spring Lane Community Centre in Canterbury on Sunday 8th December from 1.00 p.m. to 5.00 p,m, We ahve already raised more than £550 for them in this way and have only a few left
The latest edition of our newsletter is available here
The Health Committee of the House of Commons recently debated long term conditions to follow the debate go to the website
The Brain and Spine Fondation are conducting an on line survey on services for people with neurological conditions such as epilepsy affect people in the South East of England. To access the survey go to click here
Annual General Meeting
The AGM was held on Tuesday 4th June 2013 at Canterbury Umbrella Centre in the presence of the Lord Mayor of Canterbury Cllr. Heather Taylor and the Lady Mayoress Mrs. Linda Taylor. The main speaker was Emma Tingley the National Services Manger for Young Epilepsy who had travelled from Lingfield in Surrey to be with us.. Young Epilepsy is the only UK-wide charity exclusively supporting the 112,000 children and young people aged 25 and under with epilepsy and their families and Emma gave a very interesting presentation on the work they do across the country to support young people with epilepsy and their parents and carers. If you know of anyone with a child affected by epilepsy we would be happy to hear from them as we very much wish to enhance our services for children and young people with epilepsy. During the business meeting the minutes of the previous AGM and the Accounts for the year were approved All the Trustees and officers were reappointed except for Laurence Ward who was on holiday in Cornwall and had resigned as a trustee as he found it difficult to get to meetings because of his working hours.
We would like to thank Laurence for his long standing commitment to the charity and for the very practical help he has given and which we hope he will be able to continue. He has spent many hours in the office in particular in helping with the distribution of the newsletters and updating various databases of information. During refreshments Colin Barnes a longstanding member entertained as all with a performance on his violin.
Epilepsy Action have developed with NHS England and the CESS National Coordinating Group a booklet of Guidelines for children’s epilepsy brain surgery referrals in England These officially endorsed guidelines have been written to improve the number of referrals to the new service.
They are going to be circulated to every unit in England that is registered with the Epilepsy12 project, about 165 clinics. They will also be available on the NHS England website.
For our May/June/July NEWSLETTER see here
NEW DRIVING REGULATIONS
Dr Rosemary Leonard asks if GPs are failing to warn their pregnant patients about the risks of one of the UK's most widely-used epileptic drugs.
Concern is growing that mothers-to-be are not aware enough of the dangers of an epilepsy drug known to cause severe abnormalities in foetuses.
Sodium valproate has long been known to increase babies' risk of cleft palate and spina bifida.
Now new research has revealed some babies exposed to the drug also have mental problems and a survey found 25% of mothers were unaware of the risks.The drug's manufacturers insist they have always warned of the dangers.
Epilepsy Action’s campaign team launched a new report in the UK parliament’s House of Commons.
“Epilepsy services are not good enough in many areas of the UK”, said Stacey Rennard, Epilepsy Action’s campaign manager. “Our report draws attention to these shortcomings. We want people to ACT now!” she said.
“The report and its findings were very well received by all who attended”, she continued. The report’s findings were “worrying”, she said. “More needs to be done by healthcare providers and commissioners to tackle inconsistencies”.
The report found that people with epilepsy are not getting access to specialist nurses. People with epilepsy are waiting too long to see a specialist. People with difficult to control epilepsy are not being referred for other treatments.
Epilepsy Action’s Vice President, Laura Sandys MP, hosted the event. Members of Parliament, Members of the House of Lords, clinicians, key organisations and people with epilepsy were in attendance to hear the findings of the report, and Epilepsy Action’s recommendations to improve services.
There were introductory speeches, followed by discussions of the report’s findings.