For our April/May/June 2015 newsletter click HERE or January February March 2015 NEWSLETTER see HERE
Strengthening care for epilepsy
On 26th February 2015 there was a debate in Parliament on epilepsy. A three-hour slot was scheduled for the Backbench debate, representing an enormous opportunity to raise the profile of epilepsy issues and to improve provision. The report of the proceedings in which Laura Sandys then MP for Thanet South took a major part are available here
Kent Police are warning the public to beware of distraction theft where one person pretends to need help whilst another steals property see
Generic Anti-epileptic Medicine
Epilepsy Action, Epilepsy Society and Laura Sandys MP recently met with the Medicines
and Healthcare Products Regulatory Agency (MHRA) in relation to their guidance to
prescribers, pharmacists and patients in relation to anti-epileptic drugs (AEDs).
We are pleased to report that the MHRA have agreed to review the guidance and
will involve the voluntary sector and clinicians in the review. We will update
you on progress in due course.
The MHRA have requested help from the epilepsy voluntary sector across the
United Kingdom in this connection. They are keen that the Yellow Card scheme
detailsof which are given at https://yellowcard.mhra.gov.uk/ is used for the reporting
of potential adverse events that may be linked to AED brand switching. They have
had very few such reports historically andit would help ensure the issue of AED
switching is monitored and reviewed if we can encourage greater use of the scheme.
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 Britsh 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
Young Epilepsy to begin Clinical Trials on Pulseguard Alarm system
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.
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
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.