Epilepsy here

Epilepsy HERE
Registered as a Charity No. 1079172
Telephone: 01227 360207 Fax: 01227 749095
e-mail: herebay@aol.com
Meetings held 1st Tuesday monthly (except January & August)
Visit our web site on www.epilepsyhere.org.uk
MYSOLINE IS NOT BEING
The National Society for
DISCONTINUED
Epilepsy
During a general discussion on the problems faced by some members who have taken this medication for Since our inception in 1999 following the many years complained about difficulties in obtaining supplies. As we understood that the licence to disbanding of former branches the NSE has manufacture had been transferred to Acorus Therapeutics Ltd. We contacted them by e-mail and received the following prompt and helpful reply from respects. First and foremost they need to Peter Murray a Director of Acorus Therapeutics raise £30 million to redevelop their residential Ltd. "There is absolutely no reason why your
care homes at Chalfont St Peter. Not only are members should now be unable to get their
these homes the original reason for existence tablets." We have his personal assurance that
of the NSE but their closure could have far "Mysoline tablets will be available for as
reaching impact on their vital services - on long as they are needed by patients and as
research - on medical services - on training long as doctors want to prescribe them."
He explains that there was a problem in supply awareness and understanding of epilepsy.
during the first half of January since around every 4 years the government seeks to regulate the comply with the Care Standards Act but also because the Society believes that people with imposed a price cut of 7% effective from January 1st 2005. Whilst the government was trying to save money, the effect of doing so at that time of government funding which is not available year was not foreseen by them. The effect was the only way the NSE can finance this is by the sale of 22 acres from its 340 acre estate.
and wholesalers reduced their stocks of most There is to be a public enquiry in June and products - so that they wouldn't be buying at one they need as much support as possible. If price and being reimbursed by the government at you are prepared to sign a petition please let a price 7% lower than they had paid. Managing us know. We shall have a copy at the March stocks over the Christmas period is difficult enough in a normal year. This year it was more The other way in which you can help if you have epilepsy or care for someone who does is to complete a questionnaire about attitudes Romford. Our distributor failed to fulfil Mysoline to epilepsy. The questionnaire will help the orders from wholesalers for part of the second week of January. This, coupled with the de- Epilepsy Week and we shall have copies at stocking mentioned above meant that wholesalers the next meeting or send them on request.
quickly sold out of what stocks of Mysoline theywere holding and listed the product as March Meeting
'Manufacturer Cannot Supply' ('MCS') These Sari Sirkia-Weaver of Homestart Canterbury problems were all resolved in mid January, but some wholesalers actually had stocks but they meeting at the Canterbury Umbrella Centre weren't showing on their computers. This latter on Tuesday 1st March 2005 at 7.30 p.m. She matter was resolved before the end of January.
is the representative of Canterbury District "We do recognise that continuity of supply is critical for Community Alliance on the Local Strategic your members. If one of your members ever again Partnership and will tell us about the work of has difficulty in getting supplies of Mysoline, Epilepsy HERE
The Ronald Cruickshanks
Foundation
We are most grateful to this charitable trust for afurther donation of £1000, which will enable usto continue and expand the work of our charity in We are pleased to tell you that we have received 2005. They have supported us most generously accepted as a Full Member of the InternationalAlliance of Patients’ Organizations and that Monicawill be the IAPO Representative. IAPO is an Epilepsy Clinics in Canterbury
international voice for patients to express theirviews on the care and treatment that they The clinics held on a Thursday afternoon both by receive. At a conference in 2002 participants Dr. Moran and also by Tracey Truscott the identified the following key issues.
Epilepsy Nurse Specialist are currently located inthe Day Hospital in the 1937 building at the other ™ The public must be involved in influencing end of the hospital from the Outpatient Clinics.
health policy decision making and priority Information about epilepsy will be available there as well as outside Clinic C in the OutpatientsDepartment.
™ Patient groups do have a role to play but there is a risk the more vocal groups will have 26th International Epilepsy
more influence; the interest of all patients Congress
™ Genuine mechanisms of consultation must exist – this must be more than just a “tick thebox” exercise after real decisions have alreadybeen made by authorities ™ All government and medical agencies should The congress will be held in the Palais de Congrè have lay people involved in decision-making de Paris from 2th August to 1st September 2005.
bodies because social values are a part of the An interesting programme of talks is included in the programme including one by Dr. Lina Nashefon Informing Patients and Relatives on Drug ™ Charters and legislation on patients’ rights are Resistant Epilepsy and Mortality. This talk will invaluable. They should have teeth and lead to clear actions that can be monitored andmeasured.
NSE Training Day
™ Health policy should be more broadly defined Roger and Monica will be attending a Training to include not just health services, but also Day in London on 26th February to learn about preventative care and education as well as the Schools Programme. They hope to gain an determining factors such as poverty.
insight on the place of Epilepsy and other long-term conditions in the National Curriculum for Monica is hoping to attend a global conference in School. After this they hope to have opportunities London as your representative at the end of the to raise awareness in Teachers and Pupils about month and will be pleased to hear the views of the effects epilepsy can have on the education readers of this newsletter before then.

Source: http://www.patientsorganizations.org/attach.pl/588/178/Epilepsy%20HERE%20Newsletter%20February-March%202005.pdf