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Canterbury Pensioners forum have just published their first 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.
Dr Greg Rogers was a Thanet based GP who has recently moved to Hampshire. (His clinic at Bethesda Surgery has now been taken over by Dr Kanagasooriam )with special interest in epilepsy. Both these doctors have been a good friends of Epilepsy HERE for many years and a valued adviser of Epilepsy Action for . Most recentlyDr. Rogers served as clinical adviser on Epilepsy Action''s A Critical Time for Epilepsy in England report. He presented the report – along with Epilepsy Action vice president, Laura Sandys MP – at its launch in the Houses of Parliament. Greg has been appointed as the Royal College of GPs’ clinical champion for epilepsy.
- Epilepsy is one of three priority programmes being introduced each year. Each programme will run for three years. The role of the clinical champion is to work in partnership with key decision-makers and opinion-formers in each clinical area. They will influence projects that seek to improve the care provided and patients’ outcomes, particularly the following.Raising the profile and awareness of the clinical priority area among general practitioners, the wider primary health care community, and patient-related organisations and groups. See the full report from Epilepsy Action at http://www.epilepsy.org.uk/news/news/royal-college-gps-appoints-epilepsy-clinical-champion
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
On 8th March 2013 the Department of Transport the new driving regulations for people with epilepsy became law.
They follow changes recommended by the introduction of the new European Directive on Driving Standards in 2011.
The changes affect Group 1 licences, which cover driving cars and motorcycles for personal use. This is the licence that most people have.
In the main, people will still have to be seizure-free for one year before they can apply for a licence. People who have only ever had one seizure will still have to wait six months and not have another seizure before they can reapply for a licence.
However, there are some changes to people in specific circumstances.
Drivers who have only had seizures while asleep (and have only ever had seizures while asleep) may now be considered for a licence after one year. This used to be three years.
Seizures that do not affect consciousness
Currently people who have ongoing seizures that do not affect their consciousness are unable to hold a driving licence. The new law will allow people who have these types of seizure to apply for a licence while they are still having seizures. This only applies if a person has never had seizures that affect consciousness (the ability to act). They can apply for a licence one year after diagnosis.
There is a change to the law if a person’s epilepsy drug treatment is changed by a doctor or nurse. For example, if a person’s medication is changed, and this causes them to start having seizures again, they may return to the old successful treatment. In this case, they will be able to reapply for a licence after six months without a seizure. Until now this wait has been one year.
There are also some very specific changes that will affect a very small number of people, related to the issues above. We appreciate that these are difficult and complex changes to fully understand and Epilepsy Action will soon be updating its advice and information pages to include all changes.
Epilepsy Medication and Pregnancy
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.
See BBC One London In Touch 25th February on http://www.bbc.co.uk/programmes/b01qzfrp to view the programme click iplayer
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.
For full information on Pregnancy for people with epilepsy ask us for theleaflet or visit the Epilepsy Society website
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.