For our July/August/September NEWSLETTER see HERE
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Epilepsy Society are conducting research into the extra costs of living with epilepsy.
Does living with epilepsy mean you face extra costs??
The Extra Costs Commission is a year-long independent inquiry that will explore the extra costs faced by disabled people and families with disabled children in England and Wales. Epilepsy Society is gathering information on the cost of living with epilepsy to submit to the enquiry and we'd like to include real messages from people affected by epilepsy.
- Are you sometimes charged more for products such as travel insurance or car insurance because you have epilepsy?
- Perhaps you have to pay more for transport because you do not drive or have additional travel costs from attending hospital appointments?
- Maybe you have to buy extra equipment such as seizure alarms, medical jewellery, special kitchen equipment or safety pillows?
- Do you have extra costs due to repeated damage to your teeth or glasses due to falls during seizures?
- What is the impact of the additional costs to you?
Be part of the Extra Costs Commission by sharing your experiences with us. We will then tell the Commission about the extra costs people with epilepsy encounter. This information will be used to influence Government and other decision makers to address the extra costs faced by disabled people.
Canterbury Pensioners forum have just published their summer newsletter of 2014 click here to read it
The Health Committee of the House of Commons recently debated long term conditions to follow the debate go to the website
Annual General Meeting
The 15th AGM was held on Tuesday 1st July at Canterbury Umbrella Centre in the presence of the Lord Mayor of Canterbury Cllr Anne Taylor . The main speakerwas Graham Faulkner who retired as Chief Executive of the Epilepsy Society last year but remains very interested in epilepsy as a trustee of SUDEP Action the charity formerly known as Epilepsy Bereaved.
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 latest 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 comes from information from acute trusts, healthcare commissioners, local authorities and almost 1,000 people with epilepsy.
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.