Current News

Updated 8th April 2013

 

For our May  NEWSLETTER see here

NEW DRIVING REGULATIONS

rear view mirrorEpilepsy Action advise that  the Department of Transport has named Friday 8 March as the date when the new driving regulations for people with epilepsy will become law.

These changes were expected late last year, but were delayed. They follow changes recommended by the introduction of the new European Directive on Driving Standards in 2011.

The changes will 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.

Sleep seizures

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.

Smiling girl at a car windowSeizures 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.

Medication changes

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

Changes to Anti-epileptic Medication

Zonegran – (change in licence)

Pharmaceutical company have announced that their anti-epileptic drug Zonegran (zonisamide) has been given a licence for use as monotherapy. This means that Zonegran can now be used on its own in the treatment of epilepsy.

Zonegran is used for the treatment of focal seizures with or without secondary generalisation.

Fycompa (perampanel) is a new medication

Eisai  have also launched a new anti-epileptic drug. Fycompa® (perampanel) which is now available in the UK as an add-on (adjunctive) treatment of focal-onset (partial-onset) seizures, with or without secondarily generalisation, in people with epilepsy aged 12 years and older. Fycompa® is available as once-daily tablets in 2mg, 4mg, 6mg, 8mg, 10mg and 12mg tablets.


Epanutin capsules only will from last September be produced by Flynn Pharma Ltd and will be known as Phenytoin Sodium Flynn Hard Capsules’

If you take Epanutin (phenytoin) capsules you will still be able to get this medication on prescription. The change just means that the capsules will be available  under a different name:The new capsules will be exactly the same as Epanutin. The only thing that is changing is the name. they will look the same – the same size and colour, even down to the word ‘Epanutin’ on the capsule itself. The capsules will be available in all the same sizes as Epanutin: 25mg, 50mg, 100mg and 300mg.The bottles and packages that Epanutin comes in will look slightly different and will say  ‘Phenytoin Sodium Flynn’.

The packaging will continue to have the recognisable dark and light blue bands on a white background.To start with, the 25mg, 50mg and 100mg capsules will be available in plastic bottles (the same size and shape as Epanutin). In the future, the plastic bottles will come within a cardboard box. The 300mg capsules will continue to be available in blister packs within a cardboard box.

Epanutin infatabs and oral suspension will continue to be made by Pfizer but the information leaflet which currently says to 'chew the Infatabs or swallow them whole with plenty of water'. The newly issued guidelines say to chew the Infatabs before swallowing them.

If you currently take Epanutin and you have any questions, you can contact Flynn Pharma’s freephone helpline on 0800 077 8566 (open during office hours, with an answerphone outside of these hours).


Tegretol Prolonged Release (used to be called Tegretol Retard)

Novartis is changing the packaging of Tegretol Prolonged Release 200mg and 400mg tablets. So that the blister strips that the tablets come in are will become squarer squarer to match the new blister strips. The text that is written on the box will be the same, but it’s position on the box will move. The packaging is changing but the tablets themselves are not changing and will remain the same.

Epilim update

Sanofi-Aventis, who produce Epilim, have advised us of a change to the name of Epilim 200mg and 500mg tablets. The current name of 'Epilim enteric coated tablets' is changing to 'Epilim gastro-resistant tablets'. The tablets will still be enteric coated (having a protective coating that protects the tablets until they reach the intestines): it is only the name that is changing (and no change to the tablets themselves).


Yesterday, 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.

Good news for concessionary bus pass holders

Kent County Council is automatically renewing concessionary bus passes that expire from 1 January 2013 onwards.

The English National Concessionary Travel Scheme (ENCTS) was introduced nationally nearly 5 years ago and provides free off-peak travel on local bus services for older people and people with disabilities

Bus pass holders will automatically be sent a replacement pass, and will only need to contact the County Council if they have moved house since they originally applied for the pass.

Bryan Sweetland, KCC Cabinet Member for Highways, said:

"The automatic renewal of bus passes will save pass holders a great deal of time and be the most efficient use of taxpayers' money."

New passes should arrive three weeks before the existing passes expire. If not, then pass holders should contact KCC on 08458 247 802 or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Pass holders who have moved house can complete a change of address form onwww.kent.gov.uk/buspass

 

Welfare assessments for people with disabilities

Welfare assessments for people with disabilities will be made later than originally planned, the government has announced.

About 3.2 million people receive Disability Living Allowance (DLA), a payment of between £20.55 and £131.50 a week to assist them in leading independent lives.

From 8 April, it will be replaced by Personal Independence Payments (PIPs).

Now the timetable of assessments for the new benefit has been extended.

Originally, the government said that claimants already receiving DLA would be contacted between October 2013 and March 2016 and invited to make a PIP claim.

They would need to go through an assessment to check what award they were entitled to.

Esther McVey, a work and pensions minister told the Commons that the vast majority of these assessments would now be made no earlier than October 2015.

This would allow time for an independent review of the first phase of the switch to be carried out in 2014.

Assessments will be carried out in the shorter term for those claiming for the first time, or whose circumstances have changed in a way that might affect the amount they can claim.

Anne McGuire, the shadow work and pensions minister, said that the original timetable of assessments was "unrealistic" and there was some concern over the start date of June 2013 for new claimants' assessments.

The government hopes to save £2bn as a result of the switch from DLA to PIPs, but some of the original proposals were met with concern by groups representing people with disabilities.

Source: http://www.bbc.co.uk/news/business-20709623

The report is accompanied by online maps which highlight local data from the surveys conducted. This means that for the first time people with epilepsy will be able to see what local services are available and whether future plans for epilepsy are in place. The maps can be viewed at www.epilepsy.org.uk/acriticaltime
Christmas Card Sales
Once again we were able to sell over £500 worth of cards for the Epilepsy Charities we support to anble them to continue their researech into the causes and cures for epilepsy.  We look forward to the sales in October and November 2013
buscampign163

The Department of Health (DOH) has released an easy read leaflet for guidance on personal budgets.

The leaflet ‘All about personal health budgets: getting the healthcare you need: easy read’ is an update of the 2009 edition which explains what a personal health budget is, including answers to frequently asked questions, personal stories and further sources of information