.Epilepsy

 

For our July/August/September NEWSLETTER see HERE  for the October/November/December edition   click here

The latest survey by Epilepsy Action into the level of priority given by Health and Wellbeing Boards and Clinical Commissioning Groups(CCGs) who comission health services for most conditions including epilepsy shows a bleak picture with only 10% of the 204 CCGs responding claiming to have a written needs assesment of the health and social care needs of people with epilepsy. Our assessment of the replies of CCGs in East Kent indicate that only one South Kent Coastal  had such a statement. To see the national picture click here or to read the conclusions of Epilepsy Action click here

The next open meeting of Epilepsy HERE will be on Tuesday 2nd December 2014  There will be mince pies and christmas cards on sale, so come along and enloy a sociable evening with us

The British Medical Journal has published a report by eminent Epileptologists including John S. Duncan into Epilepsy Surgery. To read it click here

 

Independent Support Kent
The government is funding a two year programme to provide additional support to young people and parents during the implementation of the SEND reforms. Independent Support is an additional service that will work with, and complement the role of the Information, Advice and Support Service.

In Kent the Independent Support Service is provided by the Kent Disabled Children’s Parent
Driven Consortium with M4S acting as the lead agency.

An independent supporter can help parents of children and young people aged 0-25 and young people themselves aged 16-25. They will work directly with young people and the parents of children being assessed for an EHC plan, this will include:
 Parents/young people going through the assessment process for the first time
 Children with a statement converting to an EHC plan
 Young people with an LDA converting to a plan
To find out more call 0300 011 0151 or email:

Young Epilepsy to begin Clinical Trials on Pulseguard Alarm system

 Young Epilepsy (www.youngepilepsy.org.uk) a national centre of excellence in Lingfield, Surrey, that specializes in Epilepsy in young people, has offered to perform a clinical trial of the PulseGuard System in their Telemetry unit, beginning in September 2014.   A full white paper will be made available from this site when the trial is completed, which should be available early 2015.As more information becomes available, we will keep you posted.

 

 

 

Keep up to date @Epilepsyhere on Twitter

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.

Please email  and share your experiences.

 

Education news

Changes to special educational needs system begin
On 1 September a new law came into place in England (The Children and Families Act), which means the way children and young people with special educational needs (SEN)receive support has changed. The changes include replacing the statement of special educational needs with an Education, Health and Care plan, and SEN support for children in mainstream school instead of school action/action plus.

 

Visit Contact ba Family  education pages for detailed information about these changes, including a series of factsheets they have  developed to help you understand more about what they could mean for your child. And don’t forget, their education specialist advisers are available from Monday-Friday, 9.30am-5.00 pm to answer your query. Call  freephone helpline on 0808 808 3555, or post a query on Facebook. They can help on any aspect of education in England and Wales

 

Canterbury Pensioners forum have just published their summer newsletter of 2014  click here to read it

 

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 speaker was 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.

 

  • Greg Rogers at the launch of a critical timeEpilepsy 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

rear view mirror 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.

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

 

 

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.