.Epilepsy

For our July/August/September newsletter click here and April/May/June 2015 newsletter click HERE 

DWP has started to invite some remaining DLA claimants to claim PIP if they have a long term or indefinite award. This means if their DLA ends after September 2017 or if their award has no end date.   From 1st September this process will be extended to include the Kent postcodes of Dartford (DA) and Canterbury (CT). However, not everyone in these postcode areas will be contacted to claim PIP right away as claimants can be contacted anytime up until 30th September 2017.
The DWP informs us that they will continue to get DLA until DWP writes to them to let them know when it will end and what to do next.  For more information regarding the PIP timetable please click on the following link:

The following news items about epilepsy medication have been advised by Epilepsy Action

Carbagen 100 mg and 200 mg

14 August 2015

The following medicines are currently out of stock:

  • Carbagen 100 mg – 28 tablet and 84 tablet packs
  • Carbagen 200 mg – 28 tablet packs

Teva pregabalin 75 mg capsules – wrong strength printed on one part of pack

13 August 2015

Some packs of Teva pregabalin 75 mg have the wrong strength printed on part of the pack. On affected packs the strength is printed incorrectly, as 25 mg instead of 75 mg, in one position on the foil (see picture below).

Licence for Dr Reddy’s levetiracetam suspended

6 August 2015

The Medicines and Healthcare products Regulatory Authority (MHRA) has suspended the licence for the following epilepsy medicines made by Dr Reddy's Laboratories (UK) Limited:

  • Levetiracetam Dr Reddy's 250 mg film-coated tablets
  • Levetiracetam Dr Reddy's 500 mg film-coated tablets
  • Levetiracetam Dr Reddy's 750 mg film-coated tablets
  • Levetiracetam Dr Reddy's 1000 mg film-coated tablets

The Department of Work and pensions have published a Newsletter with articles on Later Life.The letter can be viewed here DWP newsletter on Later LifeTo subscribe, or provide contributions to
future Later Life Newsletters contact:This email address is being protected from spambots. You need JavaScript enabled to view it.

Strengthening care for epilepsy

Delegates to the World Health Assembly held in Switzerland in May endorsed a resolution urging Member States to strengthen their ongoing efforts in providing care for people with epilepsy. Although affordable treatment for epilepsy exists, up to 90% of people with the condition may not be properly diagnosed or treated in resource-poor settings. The resolution highlights the need for governments to formulate, strengthen and implement national policies and legislation to promote and protect the rights of people with epilepsy. It also stresses the need to reinforce health information and surveillance systems to get a clearer picture of the burden of disease and to measure progress in improving access to care.

Delegates emphasized the importance of training of non-specialist health-care providers as key to reducing the epilepsy treatment gap. In low- and middle-income settings, strategies to improve access and affordability of antiepileptic medicines should be a priority. Countries are encouraged to undertake public awareness activities to reduce misconceptions about epilepsy and encourage more people to seek treatment. The research capacity of low- and middle-income countries should be built through expanded academic collaboration and establishment of centres of excellence.

The resolution calls on the WHO Secretariat to continue to lead and coordinate support to Member States in addressing the global burden of epilepsy so that people with epilepsy can receive timely treatment and can benefit from educational and occupational opportunities, free from stigma and discrimination.

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

Long-term conditions lead to prescription fines in England

20 February, 2015

National news reports are calling attention to prescription fines being handed to people with long-term conditions. These fines have been charged to people who didn’t renew their exemption certificates – but were never asked to

In England, people with long-term conditions such as epilepsy are able to get their prescribed drugs free of charge. Each person is issued with a medical exemption certificate, which proves that they do not need to pay.

A new system governing these certificates was introduced in 2002. Under the new system, people with long-term conditions are still entitled to collect their prescriptions free of charge. However, they were required to renew their exemption certificate every five years.

Prescription drugsThe crucial thing that the new system didn’t do was remember to tell people about the change. As a result, many people are currently holding expired certificates because they were never told to renew them.

To apply for a Medical exemption certificate ask your doctor for an FP92A form. Your GP, hospital or service doctor will sign the form to confirm that your statement is correct. At your GP's discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from one month before the date that the NHS Business Authrority receives the application form.

The Medical Exemption certificate  lasts for five years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed. If you don't receive a reminder, it is your responsibility to ensure that it is renewed.



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

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. 

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 ParentDriven 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:This email address is being protected from spambots. You need JavaScript enabled to view it.

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

Keep up to date @Epilepsyhere on Twitter

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.

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.