In This Issue: • Postcard Campaign • Presentation to the Oireachtas

Transcription

Issue 37 - Spring 2007
Photo courtesy of Oireachtas website
In This Issue:
• Postcard Campaign
• Presentation to the Oireachtas Committee
on Generic AEDs
• Generic AEDs - Lamictal and Women
• Health, Welfare and Taxation Entitlements 2007
Brainwave
the irish
epilepsy
association
Brainwave the irish epilepsy association
Following the National Conference in September 2006, members asked for useful information in
the form of statistics that they could use when discussing epilepsy related issues. This postcard
gives details of the epilepsy related statistics in Ireland. Please give this card to your local TD/
Senator/ Local Representative and make him/her aware of the facts concerning epilepsy in
Ireland.
If you feel your local TD/ Senator or Local Representative is interested in these issues please
give him/her your copy of the newsletter and we will send you a replacement copy in the post.
1 in 131
people
have
Epilepsy
BRAINWAVE THE IRISH
EPILEPSY ASSOCIATION
249 CRUMLIN ROAD
DUBLIN 12
Tel: 01 4557500
Email: info@epilepsy.ie
Web: www.epilepsy.ie
Can you help us bring epilepsy out of the shadows?
Please send this card to your local TD / Senator / Local Representative and make him / her aware of the facts
concerning epilepsy care in Ireland. For further details contact www.epilepsy.ie
Please
Affix
Stamp
Here
FACTS
30,000 to 40,000 people in Ireland have epilepsy
70 – 80 epilepsy deaths per year
1 Neurologist per 249,113 people in Ireland
VERSUS
1 Neurologist per 19,573 people in Finland
Waiting lists of up to 2 years to see a neurologist
ONLY two Community Epilepsy Specialist Nurses to cover
the whole country
BRAINWAVE THE IRISH EPILEPSY ASSOCIATION
Epilepsy News Issue 37
2
www.epilepsy.ie
Profiles
We’d like to thank the individuals and their families for taking part in the post card campaign.
Please read their profiles below:
Rick O’Shea
Rick, 33 was diagnosed
with epilepsy when he
was 16. As a successful
RTE 2FM DJ nominated
for Best Irish Radio DJ for the
Meteor Ireland Music Awards, Rick
has worked closely with Brainwave
as its Patron.
Audrey Healy
Audrey Healy
developed epilepsy in
1988, but has not let
this stop her from
achieving her ambitions. As a
freelance journalist and writer of
several books, Audrey is an
excellent example to other young
people with epilepsy.
Audrey Murphy
Audrey has been active
in Brainwave for many
years; she has also
worked as a journalist
and has written many
articles on epilepsy, these
have included her successful
epilepsy surgery and her return to
driving as a result. Audrey
continues to be a member of
Brainwave’s Executive Committee.
Lisa Bassett
Lisa developed
epilepsy at the age of
4. She went on to live
a very full and
rewarding life. Lisa
was academically bright with a
calm disposition and a wicked
sense of humour. Lisa died
tragically at the age of 24 in 2005
from SUDEP. She left a fantastic
legacy of courage determination
and strength. Lisa achieved much
in her short lifespan but her
proudest achievement was
becoming mother to her beautiful
son Tiernan. Her spirit lives on.
Colin Jones
Colin is 19 years of
age and is currently a
first year Commerce
student at University
College Cork. He was
diagnosed with epilepsy in 2002.
His interests include GAA, playing
hurling with the UCC Freshers and
both hurling and football with his
own club, Bishopstown. He is an
active member of the club, where
he coaches the under 11 and 12
hurling teams. Colin also works
part-time as a gym instructor in
Cuts Fitness Gym in Douglas, Cork.
Brian Geraghty
Brian is a very
successful
businessman having
set up several
successful companies in different
areas of business. Brian also
appeared on Nationwide and talked
about living and succeeding in life
with epilepsy. He continues to help
others living with epilepsy by getting
involved with fundraising, in
particular Brainwaves Golf Classic.
Brian joined Brainwave’s Executive
Committee in 2006.
3
Joanna Wynne
Joanna, 30, had her
first seizure when she
was 2 years old but
was not diagnosed
with epilepsy until years later.
She is now being treated and has
been seizure free for nearly 2 years
now. Joanna attended “Training for
Success” and says; “this is a
fantastic course that has changed
my life around”.
Alderman Joe Doyle
Alderman Joe Doyle,
former Lord Mayor of
Dublin has lived with
epilepsy for many years
and has been a
wonderful advocate for others
dealing with epilepsy in the Dail, the
Senate, in Dublin City Council and
the former Eastern Health Boards.
Alderman Joe Doyle continues to
be a member of Brainwave’s
Executive Committee
Eoghan Megannety
Eoghan has epilepsy
since he was 9. He
now works at
Letterkenny vocational school
and enjoys his work. His hobbies
include photography and he had
many of these published in local
newspapers and the Brainwave
Newsletter. Unfortunately Eoghan’s
epilepsy is not well controlled and
he is currently waiting on surgery
for a VNS implant.
www.epilepsy.ie
Presentation to the Oireachtas
Committee on Generic AEDs
Submission to the Oireachtas Joint Committee on Health
and Children in respect of the proposed substitution by
Generic AEDs (anti-epileptic drugs) of Branded AEDs.
EXECUTIVE SUMMARY
The problem:
In response to the Brennan Report,
Tanaiste Mary Harney, Minister for Health
and Children proposes to introduce the
widespread replacement of branded drugs
by generic drugs for people receiving their
medication under the Medical Card and
Long Term Illness Schemes. However there
is a group of people who could lose out
badly from a policy which encourages
replacing branded products with generic
drugs, the 40,000 adults and children with
epilepsy in Ireland. It is essential that these
people receive the same medication every
time they have a prescription for AEDs (antiepileptic drugs) to ensure that their seizures
are controlled to the maximum extent.
• People with Epilepsy (PWE) in Ireland are
already a very vulnerable group because
of the lack of epilepsy specialists and no
dedicated epilepsy centre
• Less than half the PWE in Ireland have
seizure control, generic substitution of
AEDs could seriously exacerbate this
situation
• Epilepsy is the only common serious
condition for which this substitution of
drugs presents a problem
• There have been major supply problems
with generic pharmaceutical companies
in the UK, the USA and other countries.
These problems relate to these
companies supplying different quality of
product between deliveries, switching
their output to more lucrative markets at
little or no notice and pulling out of
production of AEDs with no warning.
• Switching between branded AEDs and
generic AEDs can cause loss of seizurecontrol. Breakthrough seizures can
cause loss of driving privileges, serious
injury, disrupt education and employment
and can even cause death.
The solution:
Exempt all branded anti-epileptic drugs
(AEDs) from substitution by generic AEDs
and do not allow switching between
different generic forms of any AEDs.
• Denmark, Finland, South Africa, Spain,
Sweden and many other countries have
protected AEDs. The USA, which is the
leading advocate of generic switching,
has protected the 3 most used AEDs
from substitution. The UK and Germany
have medical Guidelines in place which
recommend brand name prescribing.
• Even in markets as large as the United
States of America, recent findings
indicate that there may be no cost
savings achieved by switching branded
AEDs to generic versions because of the
additional costs of treating PWE as a
result of breakthrough seizures.
• Exempting AEDs from substitution will
ensure the prevention of potentially major
medico-legal problems.
Epilepsy Facts
There are c.40,0001 people with epilepsy
(PWE) in Ireland of whom around 12,000
are children. Epilepsy is the most common
serious neurological condition and is
characterised by the tendency to have
recurrent seizures. Brainwave is the
National body for people with epilepsy,
working from 11 centres around the
country.
There are only 16 adult Neurologists2 for
the population of 4.1million or 1 for every
256,250 people. This is by far the worst
ratio in the developed world. The UK,
which is the second worst, has a ration of
1: 154,000.
There are similar shortages of Paediatric
Neurologists, Neurophysiologists,
Neurosurgeons, Epilepsy Specialist Nurses
and other relevant disciplines. In 2003,
Comhairle na nHospideal recommended
that there should be 39 adult Neurologists
based on a population of 3.9million. Based
on the latest population figures, the
requirement now is for 41 adult Neurologists. One of the greatest advantages
Ireland has for PWE is that all of their antiepileptic medication is supplied under the
Long Term Illness Scheme or Medical
Cards. Unfortunately, this has now become
a potential liability as the changes proposed
by the Department of Health and Children
to allow the replacement of branded drugs
by generic drugs could adversely affect
PWE, already a very vulnerable group of
people.
Seizure Control
Brainwave’s ideal scenario for all people
with epilepsy is that they should have:
“No seizures and no side effects”
However, in practice it is only possible, at
present, for up to 70% of all PWE to
achieve seizure control. In fact, a major
recent survey there revealed that
throughout the UK, including Northern
Ireland, only 52% of people were
completely seizure-free. Brainwave believes
4
the equivalent percentage for Ireland is
unlikely to be better than 45% of all PWE
who are seizure-free3. Once someone
achieves this seizure-freedom, it is
imperative that they retain it because
experience shows that once it is lost, it can
very difficult to regain. The consequences of
even one break-through seizure can be
enormous, loss of the right to drive,
employment and education impact, loss of
confidence in social life, potential injury and
SUDEP4 (sudden unexpected death in
epilepsy).
Anti-Epileptic Drugs (AEDs)
Apart from epilepsy surgery, which is only
an option for a small number of PWE, AEDs
provide the only method of eliminating or
reducing seizures for PWE. Ideally, these
AEDs are chosen by an epilepsy specialist
who will also oversee their titration over
time until an optimum level is reached. This
process cannot be rushed and it is
precisely because of this that any change in
drug regime must be implemented in a
timely fashion. Consistency and continuity
of supply of AEDs is, therefore, of profound
importance for all people with epilepsy.
Branded AEDs are developed by
pharmaceutical companies who invest huge
amounts to bring these products to the
market. These companies are granted
licences to exclusively market these
products for between 10 and 20 years.
Many of these companies have large scale
operations in Ireland. When these exclusive
licences expire, any other company can
then produce copies of these AEDs without
any of the research and development costs.
No new AEDs were developed for many
years up until 1989. The AEDs which have
been introduced since 1989 have now
started to come off licence and generic
copies have begun to appear on the
market. This situation combined with The
Tanaiste and Minister for Health and
Children, Ms. Mary Harney’s5 insistence that
she will introduce an across the board
policy of replacing branded drugs with
generic drugs where they are paid for from
the public purse - this was a
recommendation of the Brennan Report –
has created a potential time bomb for many
people living with epilepsy.
Generic AEDs
For almost all other conditions, replacing
branded drugs with generic copies does
not present a problem. Epilepsy, for which
there is a very narrow therapeutic window
between the optimum dosage and a dose
www.epilepsy.ie
burden of care for PWE devolves on to
family doctors. Forcing these GPs to make
dangerous switches of AEDs not only puts
their patients at risk but may expose
doctors to unnecessary legal action.
(left to right) Fergal Browne TD with Mike Glynn, (CEO Brainwave)
that is toxic, is the only common serious
just at the time when it was most needed
condition where switching presents a
because the branded Ethosuximide11 drug,
problem- there are four other areas of
Zarontin was about to be totally withdrawn
medicine where a similar problem arises but from the market in a phased way by its
the numbers of people affected is relatively
manufacturer.
few in each of these cases.
These problems of supply and
The usual rationale used to justify the
consistency of generics in Epilepsy drugs
switching of branded drugs to generic
have been known about for many years
drugs is based on the Food and Drug
because in developing countries the main
Administration (FDA) of the USA’s ‘expert
AED used is a generic form of
opinion’ (not research based) of more than
Phenobarbitone. Recently in Chile the
Department of Health agreed a program
20 years ago, that switching was
with the epilepsy specialists in the country
acceptable provided the generic was
whereby they purchased a three year
bioequivalent to the branded version within
supply of Phenobarbitone from a single
a range of 85% -120% . Epileptologists
source to ensure that problems they have
have always contended that this range was
had with consistency of product do not
much too wide for AEDs and much recent
recur. The smaller size of the Irish market
research6 7 supports this. Quite apart from
this, a major UK survey in 2003 found that
for AEDs means that PWE are even more at
even slight changes to packaging8, to tablet
risk from suppliers of generics. This is
because of the tendency of generic drug
shape, size or colouring can have profound
companies to come in and out of markets
psychological impacts on PWE when
due to price fluctuations.
pharmacists present them with altered
prescriptions. This can even lead to
breakthrough seizures as a consequence.
The Medico-Legal Situation
A recent major survey into GPs
Brainwave has no problem with the use
of generic AEDs for children and adults with knowledge12 about epilepsy, which covered
the HSE Cork/Kerry region, found that GPs
epilepsy who are newly diagnosed. This is
provided that these AEDs are prescribed by knowledge of AEDs varied enormously from
doctor to doctor. The survey further found
an epilepsy specialist and provided that the
that although the GPs had a reasonable
same generic AED is given at each renewal
understanding of the impact of seizures on
of prescription and that the supply of this
the lives of epilepsy patients, many didn’t
AED is assured as to content and
fully understand the full effect that
consistent availability in pharmacies.
breakthrough seizures could have on the life
Generic Drug Suppliers
of a PWE. These effects range from loss of
The first essential in supplying any drugs
driving privileges, loss of earnings, major
for long term conditions is the assurance
injury and even death. The landmark
that the drug will be available each time the
Findlay13 case judgement in Scotland
person goes to his/her pharmacist to renew recently has made GPs throughout the UK
their prescription. There is also the concern
very wary of causing unnecessary seizures
thereby increasing the risk of SUDEP14
for PWE that the consistency of the same
(sudden unexpected death in epilepsy)
drug does not vary between prescriptions.
In the UK and the USA there have been
because seizure control has been accepted
major problems in both of these areas, with
as the primary factor in the prevention of
supply and in particular with generic
SUDEP15.
Carbamazepine9. More recently in the UK a
generic version of Ethosuximide called
The severe shortage of Epilepsy
Emeside10 was withdrawn from the market
specialists in Ireland means that a huge
5
Legislation
Even though the basis for generic
substitution can be traced back to the
FDA’s recommendations, the FDA itself
moved to protect three major AEDs
Carbamazepine, Phenytoin and Sodium
Valproate by listing these products for
restrictions on generic prescription.
Sweden, Denmark, Finland and Spain all
countries with far greater numbers of
Neurologists than even Comhairle na
nHospideal has recommended for Ireland,
have all placed major restrictions on the
prescription of branded AEDs by generics.
In the UK these restrictions do not exist
but in England and Wales there are NICE16
(National Institute of Clinical Excellence)
Guidelines and in Scotland SIGN17 (Scottish
Intercollegiate Guidelines Network)
Guidelines both of which have issued
strong recommendations that only branded
AEDs should be prescribed for PWE. These
Guidelines allow PWE to challenge any
generic substitution of their drugs and also
give prescribing doctors protection.
However, they offer no protection against
PWE being prescribed generic AEDs by
doctors who are unaware of the guidelines.
In Ireland there is no firm protection
against generic substitution or any medical
guidelines in place.
1
Liggan B, Delanty N. Epilepsy and Pregnancy Pgs 23-28 Vol.
32, No Oct 2002
2
Report of the Committee to Review Neurology and
Neurophysiology Services, Comhairle Na nOspideal April 2003
3
Moran NF, Poole K, et al. Epilepsy in the UK: seizure
frequency and severity, anti-epileptic drug utilization and
impact on life in 1652 people with epilepsy, ‘article in press’
Seizure 2003
4
Hanna NJ, Black M, et al. National Sentinel Clinical Audit of
Epilepsy-Related Death. Epilepsy- death in the shadows. The
Stationary office Report 2002
5
The Irish Times Health Supplement, July 12th 2005 “Generic
drugs could save State ‘millions’”
6
Wilner AN. Therapeutic equivalency of generic antiepileptic
drugs: Results of a survey. Epilepsy Behav 2004;5;995-998
(USA)
Crawford P, Feely M, et al. Are there potential problems with
generic substitution of antiepileptic drugs? A review of issues.
Seizure (2006) 15, pgs 165-176
7
8
Epilepsy Action: The Anti- Epileptic Medication Packaging
Survey. Oct 2003
9
Carbamazepine- Epilepsy Action website :
www.epilepsy.org.uk, Epilepsy Foundation website:
www.EFA.com
10
Emeside - Epilepsy Action website: www.epilepsy.org.uk
11
Ethosuximide- Epilepsy Action website: www.epilepsy.org.uk
Neligan A, Renganathan R, et al. Management of Epilepsy in
the Community. Irish Medical Journal, Feb 2006 pgs 52-54
12
13
Sheriff Taylor Report, Epilepsy Fatal Accident and Sudden
Deaths Inquiry. Sept 2002 www.epilepsyscotland.org.uk
14
15
16
National Institute of Clinical Excellence. Epilepsy Guidelines.
Oct 2004
17
Scottish Intercollegiate Guidelines Network, Apr 2003.
www.epilepsy.ie
Entitlements
HEALTH, WELFARE & TAXATION
ENTITLEMENTS, SUPPORTS,
RELIEFS 2007 (IIncorporating changes from Budget 2007 )
Free Medication:
All persons with epilepsy are entitled
to anti-epileptic medication free of
charge through the Long Term Illness
Scheme. Where an applicant is eligible
for the Primary Care Re-imbursement
Scheme (PCRS was formerly GMS or
Medical Card) this covers medication
also. The L.T.I.S. is granted irrespective
of means to all persons not entitled to a
P.C.R.S Card Card. For the L.T.I.S. apply
to your health board for a form to be
completed by the applicant and a
doctor/consultant.
PLEASE NOTE: Free Travel is available
only to persons on specified benefits
and allowances and not to all persons
with epilepsy. From March 07 there will
be automatic entitlement to a Free
Companion Travel Pass to persons aged
66-74 who are medically unfit to travel
unaccompanied.
AIDS AND APPLIANCES : BRAINWAVE
SCHEME : Brainwave the Irish Epilepsy
Association runs a scheme for the
provision of an Epi-Alert Identity
Bracelet or a Safety Pillow free of charge
to members only. The bracelet carries the
number of Contactors Medical Bureau in
Dublin which will store applicants details as
provided by their doctor. In the event of an
emergency these details can be accessed
from the Bureau by authorized personnel if
the wearer is unconscious or unable to give
details of their epilepsy and treatment to
emergency services, hospitals or police.
The safety pillow is suitable for those with
sleep seizures. To qualify for either a free
pillow or bracelet you need to be a paid up
current member of Brainwave the Irish
Epilepsy Association and complete an
application form obtainable by contacting
01-4557500.
CONDITIONAL ENTITLEMENTS:Primary Care Re-Imbursement
Scheme (PCRS) (formerly GMS or
Medical Card):
Those covered by a PCRS card get all
medicines and health care free of
charge.
To Qualify: Household income must
normally be below a certain level (except for
those over 70 who automatically qualify).
This level is adjusted every year, and it
varies too according to whether you are
single or married, the number of children in
the family and any rent or mortgage you are
paying and some travel expenses. In some
cases, persons whose income is above the
guidelines may still be given a medical card
if the health board considers they are
unable to provide the necessary care for
themselves and their family. A medical card
may be awarded to an individual member of
the family on an individual basis. Income is
gross income less PRSI contributions.
There is also now a limited form of
Doctor visit only PCRS card to cover GP
visits but not the cost of prescriptions for
those who don’t qualify on income grounds
but for whom the cost of visiting the GP is
prohibitively high. This scheme is additional
to the existing GMS scheme and up to
230,000 people may be able to access free
GP services through this scheme. The
scheme is currently accepting applications
through the Health Services Executives
areas.
How to Apply: Application forms are
available at your HSE/health centre. In an
emergency, you may be able to claim shortterm assistance with medical costs from
the Dept of Social Welfare.
PAYMENTS
DISABILITY ALLOWANCE
Paid by: This is a means tested payment
from Department of Social Community &
Family affairs.
To Qualify: You may be entitled to this if
you are aged 16 to 66 years and are
suffering from a specified disability which
results in you being “substantially
handicapped” in undertaking work which
would otherwise be suitable for a person of
your age, experience and qualifications. You
must not be living in an institution. D.A.
rates will increase to ¤ 185.50 per week
(personal rate) from January 2007
Recipients qualify for Free Travel Pass,
other Benefits are conditional.
From June 07 there will be an increase in
the disregard for means assessment for this
payment from ¤ 20,000 to ¤ 50,000.
DOMICILIARY CARE ALLOWANCE
Paid by: This is a health service executive
payment which is paid monthly
To Qualify: This allowance is paid to
parents of children with a severe disability
who live at home.
Conditions: The child must be aged
under 16 (at 16 the child may qualify for a
disability allowance). The disability must be
so severe that the child needs constant
care and supervision, substantially more
than a child of the same age. Only the
child’s means are assessed. DCA is only
payable if the child lives at home.The full
maximum rate is now increased to ¤ 281.30
per month. A reduced rate may be payable
in some instances.
6
Respite Care Grant
From June 2005 respite grant is now
extended to all carers providing full time
care to an eligible older person or an
eligible person with a disability,
irrespective of means but conditions apply
(see below). Budget 2007 increased this
grant to from ¤ 1200 to ¤ 1500 per person
being cared for. The grant is paid annually
at the end of June. Apply in the month of
June if you are a fulltime carer for an
eligible child or adult with a disability. Form
RCG 1 is available from your local social
welfare office or from your local Citizens
Information Centre or from www.welfare.ie
or by phoning the LoCall Leaflet Request
line 1890 20 23 25. Complete a separate
form for each individual person if you are
caring for more than one qualifying person.
Return completed forms to : Respite
Care Grant Section PO Box 10085, Dublin
2 Tel 01-6732222
NB you are not expected to be caring
24 hours before each case is assessed
individually. The Department will apply
the arrangements in a flexible manner
considering the needs of yourself and
the person being cared for. You must
have been caring for the person for at least
six months including the first Thursday in
June to qualify. You must live with the
person or have a direct system of
communication between your home and
theirs. You may take up education, training
or work outside home for a specified limited
number of hours weekly if the Dept of
Social, Community and Family Affairs
approves this.
NB: Full Time Care is defined as
requiring continuous supervision and
frequent help throughout the day with
personal needs, walking and getting about,
dressing, washing eating and drinking; or
continuous supervision to avoid danger
to themselves and full time care and
needing attention for at least six months
which must include the first Thursday in
June.
DISABILITY (SICKNESS) BENEFIT
Paid by: The Department of Social
Community and Family Affairs
To Qualify: You must under 66, be
incapable of work due to illness and have
52 PRSI contributions. Rates are being
increased from ¤ 165.80 to
¤ 185.80(personal).
INVALIDITY PENSION
Community and Family Affairs
To Qualify: You may get this if you have
been receiving Disability Benefit for at least
twelve months or sending in certificates for
credits for at least a year and will continue
to be incapable of work for at least a further
twelve months. It may be possible to go
straight onto Invalidity Pension if the illness
is of such a nature that you are unlikely to
be able to work for the rest of your life.
Budget 2007 increased the basic personal
rate to ¤ 191.30 weekly (under 65) and all
other rates were increased in line with main
www.epilepsy.ie
Entitlements
social welfare increases. Conditions: You
must have at least 260 contributions paid
since entering insurance and at least 48
contributions paid or credited in the year
before.
DISABLEMENT BENEFIT /
UNEMPLOYABILITY SUPPLEMENT
Community and Family Affairs.
To Qualify: You will receive this if you have
a physical or mental disability as a result of
an injury at work or an occupational disease
and you are in insurable employment.
CARER’S ALLOWANCE
Paid by: This is a means tested payment
by the Department of Social Community
and Family Affairs. From April 07 the
weekly income disregard will be increased
from ¤ 290 for a single person and ¤ 580
for a couple to ¤ 320 and ¤ 640
respectively. The weekly rate of payment
will increase to ¤ 200 (aged under 66) and
to ¤ 218 (aged 66 and over).
A carer providing full time care and
attention to a qualifying person may qualify
for payment.
Conditions: The person must be
incapacitated and require full time care and
attention and must be likely to require it for
at least 12 months. They must be in
receipt of a qualifying payment such as
Invalidity or blind pension, Disability
Allowance, a similar social security payment
from another EU Member State or from a
country with which Ireland has a bilateral
social security agreement, or full rate
Domiciliary Care Allowance. Recipients of
this payment may be eligible in their own
right for Free Travel and |the Household
Benefits package.
From Sept 07 a half payment of Carers
Allowance (up to a maximum of ¤ 109 per
week) will be available to certain persons on
other welfare payments in addition to
current entitlements if they are also
engaged in caring.
Carers Benefit
This is a short term payment for up to 2
years for those who give up employment
to care for someone who requires full time
care. You must have sufficient PRSI
contributions. The conditions require
recipients of Carers Benefit to be in
employment for at least 8 weeks in the
previous 26 weeks prior to commencement
of full time caring. You may currently work
up to 15 hours per week and still qualify for
payment. There is a maximum income
which you can earn from employment or
self employment. The basic weekly rate of
payment is increased to ¤ 200.70.
PERSONAL DISABILITY PAYMENT
replaced by Disability Allowance
Full rate Disability Allowance will ,
from January 07, be made available to
all persons resident in institutions who
were previously ineligible for this
payment. This replaces the ¤ 35 weekly
payment that applied previously.
INCOME TAX
Incapacitated Child Tax Credit may be
claimed by a parent or guardian of a child
who has a permanent disability whether
physical or intellectual and is permanently
incapacitated from maintaining him/herself
independently in the long term. The
conditions are that the child must have
have become incapacitated (1) before the
age of 21 or (2) after age 21 whilst still in
full-time education or training for a
trade/profession for a minimum of 2 years.
Apply to the revenue commissioners with
medical evidence such as a doctors letter.
The Tax Credit is now increased from
¤ 1500 to ¤ 3000. Qualifying disabilities
include Cystic Fibrosis, Blindness,
Deafness, Downs syndrome, Spastic
Paralysis, Acute Autism, certain forms of
Schizophrenia. If the disability can be
corrected by treatment the child is not
considered permanently incapacitated so
children whose epilepsy is controlled
/controllable by medication would not be
eligible unless they have another qualifying
disability. If a child has epilepsy which is
considered refractory or intractable the
parent/guardian may apply for consideration
for this credit. The list of disabilities above is
not exhaustive.
Allowance for Employing a Carer for
an Incapacitated Person
This allowance is up to ¤ 50,000 at your
highest tax rate is available where a carer is
employed to care for a person with a
disability including a child. One or more
family members of the person being cared
for can claim the allowance.
Home Carers Tax Credit of ¤ 770 may
be available to married couples who are
jointly assessed where one spouse is a
home carer for a dependent child or
children (for whom Child benefit is paid) or
for a person over 65, or someone who is
permanently incapacitated. There are limits
applicable to the level of income of the
home carer.
Dependent Relative Tax Credit This
credit of ¤ 80 may be available to a person
who maintains a relative who has a
disability - subject to a maximum income
level.
Health Expenses (FORM MED 1)
You may claim tax relief on certain
medical expenses that you have already
not claimed for from private health
insurance such as cost of doctor’s visits,
hospital and nursing home charges,
prescription charges, certain specified
equipment, educational assessment and
therapy.
For full details of all the above
allowable reliefs and the conditions
attached see www.revenue.ie or phone
your regional revenue district.
certain limit each month. Although people
with epilepsy receive free medication on the
Long Term Illness Scheme they do have to
pay for prescriptions for some other
conditions if they don’t qualify for a medical
card.Currently the threshold is ¤ 85 as the
maximum payable by families registered for
the scheme per month. Apply to your local
Health service executive to register for the
scheme. Payments made under the
scheme may be allowable against income
tax.
Hospital charges Patient bed charges
are ¤ 60 per night for a maximum of 10
nights per year i.e. maximum charge ¤ 600
even when stay exceeds 10 nights or there
are several stays in different hospitals.
Accident & Emergency charges are also
increased to ¤ 60. In cases of hardship a
letter outlining the circumstances should be
sent to the patient accounts department of
the hospital.
Health Board Aids and Appliances
Scheme If you require a safety appliance
such as a helmet or alarm you may apply
to your local health service executive
(disability section) for funding with
supporting documentation. Applications are
assessed individually under the scheme.
Local Authority House Adaptation
Grants for People with Disabilities If you
require adaptations to be made to your
home on account of your epilepsy you may
apply for a grant from your local authority
for all or part of the cost. The types of work
covered are usually at the level of
modification of bathrooms to include
showers but may extend to provision of
ground level bathroom/bedroom. An
Occupational Therapist report
recommending such adaptations is
essential.
*FOR FURTHER INFORMATION ON
THE ABOVE CONTACT YOUR LOCAL
HEALTH SERVICE EXECUTIVE,
DEPARTMENT OF SOCIAL
COMMUNITY AND FAMILY AFFAIRS,
REVENUE DISTRICT OR CITIZENS
INFORMATION CENTRE.
Acknowledgments:
This leaflet was compiled with the
assistance of information supplied by
COMHAIRLE
www.comhairle.ie, Dept. of Social,
Community and Family Affairs,
www.welfare.ie and Revenue
www.revenue.ie
Other Provisions under the Health
Service Executive and Local
Authority
The Drug Payment Scheme is available
to ensure that the cost of prescription
medicines for each family do not exceed a
7
www.epilepsy.ie
2006 Picture Review
1
2
3
4
5
6
7
8
8
www.epilepsy.ie
1. Michael O'Mahoney Psychotherapist who
delivered the presentation "Parenting a
child/young adult with epilepsy" during NEW
2006 with Brainwave CRO, Anna Kelly, Limerick.
2. Brainwave AGM held in Dundalk
3. Margaret Bassett, CRO Midlands and Ava
Battles, Director of Services, accept the cheque,
representing the proceeds of the Fashion Show
held in memory of Lisa Bassett.
4. Participants at the Mini-marathon on the June
bank holiday weekend
5. “Make My Day” seminar Dundalk
6. Brainwave’s 2006 Golf Classic – a quick photo
before Tee-off
7. Paul Sharkey, Brainwave and Dr. Norman
Delanty, Consultant Neurologist, Beaumont
Hospital at the official launch of the JEC Best
Health Award.
8. The monthly News and Star Award being
presented to Brainwave in the South East,
Brainwave went on to be the overall winner for
2006
9. Brainwave CEO Mike Glynn; Audrey Healy;
Brainwave CRO Margaret Bassett and Glenda
Wright Brainwave's Fundraising Manager at the
official launch of Audrey Healy’s book “The
Singer and the Song”
10. A new educational CD-Rom The Interactive
Junior Illustrated Encyclo-paedia of Epilepsy by
Peter Rogan was officially launched by
9
10
11
12
Brainwave's patron,
Rick O'Shea RTE 2FM
presenter, in Crumlins
Childrens Hospital on
Tuesday May 16th
2006
11. Brainwave had an
Information Stand at
the Practice Nurses
Conference at the
Lyrath Hotel, Kilkenny
13th & 14th Oct.
12. Simon Coveney MEP;
Mairead McGuinnes
MEP; Rick O'Shea;
Kathy Synott MEP;
Mike Glynn, Brainwave
CEO; Gay Mitchell MEP; & Ava Battles,
Brainwave Director of Services at the European
Parliament.
13. Dermot Monaghan, Disability Services Manager
Health Services Executive North West, Mags
Rogers, Development Officer Neurological
Alliance of Ireland, (NAI),The Mayor of Sligo,
Councillor Rosaleen O'Grady, Agnes Mooney,
Community Resource Officer Brainwave, and
Finbar Colfer, Regional Manager, Peter Bradley
Foundation.
14. Brainwave’s Celebrity Patron 2FM Radio
Presenter Rick O’Shea
9
13
14
www.epilepsy.ie
Women with epilepsy on Lamictal should ensure that
they receive the same AEDs at every prescription.
Mike Glynn Feb 2007
From the early nineteen nineties
and even earlier many women and
girls with epilepsy and their doctors
had grave concerns about the
possibility of AEDs causing birth
defects in babies born to mothers
with epilepsy.
Confirmation that this was particularly
true of the older drugs such as Sodium
Valproate (Epilim), especially and
Carbamazepine (Tegretol) came with
reports from the many Epilepsy
Pregnancy Registers set up in Europe,
the USA and in other countries. In fact,
all AEDs increase the risk to the babies
of mother to be and especially when
more than one epilepsy drug are being
taken together. However, all women
who become pregnant run the risk of
birth defects in their babies but the
risks increase for women taking antiepileptic drugs. This risk though has to
be looked at in combination with the
often great benefits which these drugs
bring to the women taking them whose
quality of life can be hugely enhanced
by the elimination or reduction in
seizures achieved by taking the AEDs.
The arrival of the Lamotrogine AED
under Glaxo Smith Kline’s (GSK) brand
name of Lamictal in 1995 seemed to
provide a much better drug for women
with epilepsy. Lamictal, in common
with all the other new epilepsy drugs
produced since the late nineteen
seventies, had much better tolerability
and much fewer side effects than the
older AEDs. From its outset, GSK
talked up Lamictal as a much better
choice for women of all ages and
especially those of child bearing age
and this has largely proven to be the
case. There was a scare last year with
Lamotrogine being linked to some
specific birth defects in five cases
reported by a major American Epilepsy
Pregnancy register. It should be noted
though that all AEDs carry birth defect
risks and these particular ones were
not major deformities and there are
some indications that the findings were
of a once-off nature. Doctors were
convinced by the science backing up
the arguments in favour of GSK’s new
drug and Lamictal rapidly became the
drug of choice when the patient was a
woman and particularly so if she was
likely to bear children.
So, everyone appeared to be a
winner but behind the scenes what
was not apparent to everyone was that
Lamictal was much more expensive
than the older AEDs and even
compared to most of the other newer
drugs. The General Medical Services
took the cost on the nose as all people
with epilepsy in Ireland can receive their
epilepsy drugs on the long term illness
scheme or on their medical card. Last
year GSK’s patent ran out and now
any pharma company can make and
sell their own branded version of
Lamotrogine.
Because of Lamictal’s high price,
many Generic companies were very
interested in supplying this lucrative
market and, to date, six companies
have got licences to sell their generic
versions of Lamotrogine under various
different brand names. This is where
the problem for people using Lamictal
has arisen. Prior to the expiry of GSK’s
patent there was only one Lamotrogine
product on the market: Lamictal, now
there are many and this can cause
confusion for Doctors for Pharmacists
and, of course, for women with
epilepsy.
The increase in the number of
Lamotrogine products on the market
may represent good news for newly
diagnosed people with epilepsy and
women particularly because the
epilepsy specialist prescribing for them
can now specify one of a number of
versions of generic Lamotrogine AEDs
and, provided s/he is happy that the
company supplying it is reliable, and
that it will work and this will cost the
state considerably less money than
might have been the case in the past.
The consequence of this should be
that the person with epilepsy is left on
the same medication without fear of
switchiong. There are quite a number
of generic Lamotrogine on the Irish
market now and the table included with
this article illustrates this. These generic
products are marketed under many
names such as Lamot, Lamoro and, of
10
course Lamictal is still being produced
but what is very intriguing is that three
companies are now selling drugs with
the name “Lamotrogine” as the part or
all of branded name. One of these
companies is GSK itself even though it
continues to sell its branded Lamictal
drug as well, presumably for a much
higher price. One of the other
companies selling a “Lamotrogine”
branded drug is Teva Pharma B.V.
which calls its product “Lamotrogine
Teva”. Teva Pharma was a supplier of
a generic version of Carbamazepine in
the UK up until last March when it
pulled out of the market suddenly. This
is one of the risks people with epilepsy
run when they are on a generic AED.
Anyone who was taking Teva’s
Carbamazepine drug would have had
to be switched back to Tegretol, which
is just as bad as switching from
Tegretol to a generic, or to another
generic version. This is where all the
trouble arises; any switching between
any AED can lead to breakthrough
seizures and all that goes with that. For
a women who is carrying a baby, a
breakthrough seizure can be even
more complicated because trying to
regain seizure control may be much
more difficult.
So, any girl or woman (or indeed
anybody) whose prescription is for
Lamictal should be very vigilant in
ensuring that her prescription clearly
states “LAMICTAL” when she receives
it from her Doctor and that that is the
name clearly written on the box,
packet, tube or whatever form her
AEDs usually come in, when she
receives it from the Pharmacist.
Because of the many generic products
now containing the name
“LAMOTROGINE” she should be very
wary of this name appearing on her
prescription. If however, any woman
has been prescribed a generic version
of this drug from the outset, then she
must equally ensure that she receives
exactly the same product named on
her prescription every time.
Consistency of supply is the most
crucial element in all of this.
www.epilepsy.ie
Trade Name
Licence Holder
Licence Number
Strength
LAMICTAL 2 MG DISPERSIBLE TABLETS
GlaxoSmithKline (Ireland) Ltd
PA1077/061/005
2 Milligram
Tablets
LAMICTAL DISPERSIBLE
PCO Manufacturing Limited
PPA0465/092/005A 5 Milligram
Tablets
Tablets
Tablets
LAMICTAL DISPERSIBLE TABLETS 100MG
PA1077/061/009
100mg Milligram
Tablets
PA1077/061/010
200 Milligram
Tablets
LAMICTAL DISPERSIBLE TABLETS 25 MG
PA1077/061/007
25mg Milligram
Tablets
PA1077/061/008
50 Milligram
Tablets
PA1077/061/006
5 Milligram
Tablets
LAMICTAL TABLETS 100MG
PA1077/061/003
100 Milligram
Tablets
LAMICTAL TABLETS 200 MG
PA1077/061/004
200 Milligram
Tablets
PA1077/061/001
25 Milligram
Tablets
PA1077/061/002
50 Milligram
Tablets
LAMORO
Arrow Generics Limited
PA1130/006/001
2 Milligram
Tablets
LAMORO
PA1130/006/004
50 Milligram
Tablets
LAMORO
PA1130/006/002
5 Milligram
Tablets
LAMORO
PA1130/006/006
200 Milligram
Tablets
LAMORO
PA1130/006/005
100 Milligram
Tablets
LAMORO
PA1130/006/003
25 Milligram
Tablets
LAMOT
McDermott Laboratories Ltd t/a Gerard Laboratories
PA0577/077/001
25 Milligram
Tablets
LAMOT
PA0577/077/002
50 Milligram
Tablets
LAMOT
PA0577/077/003
100 Milligram
Tablets
LAMOT
PA0577/077/004
200 Milligram
Tablets
LAMOT DISPERSIBLE 100 TABLETS
Rowex Ltd
PA0711/085/004
100 Milligram
Tablets
LAMOTRIGINE
Rowex Ltd
PA0711/096/001
25 Milligram
Tablets
LAMOTRIGINE
Rowex Ltd
PA0711/096/002
50 Milligram
Tablets
LAMOTRIGINE
Rowex Ltd
PA0711/096/003
100 Milligram
Tablets
LAMOTRIGINE
Rowex Ltd
PA0711/096/004
200 Milligram
Tablets
LAMOTRIGINE
PA1077/110/003
25 Milligram
Tablets
LAMOTRIGINE
PA1077/110/005
100 Milligram
Tablets
LAMOTRIGINE
PA1077/110/002
5 Milligram
Tablets
LAMOTRIGINE
PA1077/110/004
50 Milligram
Tablets
LAMOTRIGINE
PA1077/110/001
2 Milligram
Tablets
LAMOTRIGINE
PA1077/110/006
200 Milligram
Tablets
LAMOTRIGINE TEVA
Teva Pharma B.V.
PA0749/020/001
25 Milligram
Tablets
LAMOTRIGINE TEVA
Teva Pharma B.V.
PA0749/020/002
50 Milligram
Tablets
LAMOTRIGINE TEVA
Teva Pharma B.V.
PA0749/020/003
100 Milligram
Tablets
LAMOTRIGINE TEVA
Teva Pharma B.V.
PA0749/020/004
200 Milligram
Tablets
11
Dosage Form
www.epilepsy.ie
Thanks to.......
Many thanks to everyone
that supported in the
Brainwave Christmas
Card Appeal
Throughout the lead up to Christmas
we received an overwhelming response
to our 2006 Christmas Card Appeal.
Over 100 members and friends of
Brainwave supported our Charity
Christmas Card Appeal by ordering and
sending Brainwave Christmas Cards.
Not only are Brainwave Christmas Cards
a fundraising activity for the organisation
but they also are great for raising
awareness of our organisation.
We would like to say a
special thanks to Karen
Long and Laura O’Regan,
students from the Christ
King Secondary School,
Cork for supporting the Christmas Card
Appeal by selling Brainwave Charity Cards
in their school. Pictured below is our
Community Resource Officer from Cork,
Niamh Jones with Karen, Laura and the
rest of their class mates.
And
finally to those of
you that sent donations
over the Christmas period to
show your support of the work we do in the
community throughout the country.
This song reached no. 12 in the Irish
Charts, and received great TV and Radio
coverage for epilepsy and Brainwave.
Thomas represented Brainwave on his
many TV and Radio interviews and
highlighted the importance of increase
awareness of Epilepsy in Ireland.
You can see the clip of Thomas on
Tubridy Tonight on the following website
http://www.youtube.com/watch?v=Hqdk50
a3o9c or hear his interview with Rick
O’Shea on 2FM on the interview section of
Rick O’Shea 2FM webpage http://www.rte.ie/2fm/rickoshea/
The Crew with Ryan Tubridy
Pugwash
and
Friends
Many thanks to Thomas Walsh of
Pugwash who wrote and released a
Christmas Single for Brainwave, Tinsel &
Marzipan. Thomas recorded this with
Pugwash band members Keith Farrell,
Aidan O’Grady and friends Mundy, Neil
Hannon from Divine Comedy, Dave
Gregory formerly of the band XTC.
Thomas Walshe, Neil Hannon & Mundy
Dressing Room Mugging
12
www.epilepsy.ie
Upcoming Events...
2007 Ladies Mini Marathon
13
www.epilepsy.ie
Epilepsy Awareness
Evening
“Living Positively with Epilepsy”
By Agnes Mooney, Community Resource Officer
The Ramada Encore Hotel, in Letterkenny
was the venue for the last Epilepsy Awareness evening of the year.
The evening was very well attended, with
nearly 50 people arriving on the night, some
having travelled up to 40 miles to hear
Cora’s talk on “Living Positively with
Epilepsy”.
Cora Flynn, CESN with Beaumont and
Brainwave was the guest speaker for the
evening.
Cora’s presentation entitled: Living
positively with Epilepsy was very informative
and the questions at the end of the evening
reflected this very well.
Some of the topics covered in the
presentation were Stigma, epilepsy and
fertility, employment, leisure activities,
SUDEP, what to do when not coping,
Nurses
helpline
Community Epilepsy
Specialist nurse
Sinead
Murphy
is available
on Brainwave's
Telephone
Helpline on
Mondays
Community
Epilepsy
Specialist Nurse
Denise
Cunningham
is available on
Wednesdays.
The Helpline
01 455 4133
operates from
09.30am - 1.00pm
overcoming obstacles, and many more.
Stigma: stigma is described as the
negative reactions people have when
encountering those who are undesired.
Despite increasing knowledge some
behaviour mimics past beliefs about people
who have seizures, and ignorance in the
true sense of the word causes stigma.
Unfortunately there is still stigma out there
regarding epilepsy, but the only way to
remove it is to keep plugging awareness
and getting the correct information out to
as many people as possible.
Employment: Nearly all jobs are open to
people with epilepsy. We need to be
informed about epilepsy so that we can
inform employers, teachers etc. Some of
the professions that are restricted for
people with epilepsy: e.g. aircraft pilot,
ambulance driver, merchant seaman, HGV,
Taxi, Bus or Train Driver. Jobs in armed
service, fire brigade, or police. One thing to
watch out for, is not to over-emphasise
epilepsy and not assume that epilepsy is
the reason if unsuccessful in job
application.
Pregnancy and contraception:
Remember the majority of women with
epilepsy have a normal delivery
What to do when not coping:
Some of the hints that Cora gave were:
Stop negative behaviours, find a trustworthy
person that you can talk to when you are
going through a bad patch. Believe in life’s
goodness, and sometimes we need to
lower our expectations. Plan to deal with
personal issues. And last but not least: Be
good to yourself, eat right, take time to
relax, and make time for people you like.
Overall this was a very successful
meeting and here are some of the
comments made by some of those
attending the meeting, “ excellent
information, I wish my daughters teacher
had been here to hear Cora”! another
comment:” We need someone with as
much information as Cora in our own area”.
This is something Brainwave is working on,
providing a community epilepsy specialist in
other areas of the country.
Training for Success
students
graduate
with flying
colours!
Another “first” for Training for Success
Brainwave’s Training for Success course
continues to develop to meet the
challenges of providing opportunities for
people with epilepsy in a continually
changing Ireland. In recognition of the fact
that third level education has become the
choice for increasing numbers of people,
students of the course now have the
additional option of studying the A3L
Foundation Certificate which qualifies them
to take a third-level course.
Twelve young people from around the
country graduated this year from Training
for Success and five of these also
completed the The I.T. Sligo A3L
Foundation Certificate. They are the first
students at I.T. Sligo to graduate with this
qualification. These five students will
continue their studies in Business and
Humanities and in Engineering and hope to
graduate with degrees in the coming years.
14
The A3L Foundation course is based on
a model developed by Líonra, the network
of third-level colleges in the BMW region. In
addition to Training for Success course
subjects, students study math’s and an
optional link module in science, engineering
or business, this equips them to study that
subject at third level.
Students who do not wish to complete
the Foundation course still have the option
of completing the course with FETAC
qualifications.
The course is funded through FAS and
no fees apply. Students are in receipt of
weekly allowances of up to ¤ 291.50 per
week where eligible.
Applications are now being accepted for
the new course starting in August 2007.
For further information contact Honor or
Maire at the Training for Success office 071
9155303 or Brainwave at 014557500.
www.epilepsy.ie
Notice Board
Midlands
Outreach Services
Portlaoise Thursday 22nd February 07
Athlone Monday 26th March 07
Longford Thursday 3rd May 07
The above outreach services will take
place in The Citizens Information
Centres in each location and are by
appointment only. If you are interested
in discussing any epilepsy issues with
Brainwaves Community Resource
Officer Margaret Bassett please ring
057 93 28631 for appointment.
Support Group
The first midland support group will
meet in Tullamore on Wednesday
evening 21st March 07.
For venue and more details please
contact Margaret Bassett CRO
Brainwave at
057 93 28631
Upcoming Seminars
Brainwave will host a number of
Seminars in 07.
Dates to Remember
Thursday 26th April 07 Tullamore
Health Professional Seminar Afternoon.
Thursday 26th April 07 Tullamore
Parents Seminar Evening.
Wednesday 23rd May 07 Tullamore
Employers Seminar Morning.
Places are limited for seminars so
please book early. Interesting speakers
and topics are promised. To book
place call 057 93 28631 and leave
message should you get voice mail
Parents and Carers Seminar will take
place on Thursday April 5th 2007 in
Tullamore. Please contact Margaret to
book a place.
North East
Noreen O’Donnell can be contacted in
the Dundalk Office 042-9337585 on
Monday, Tuesday and Wednesday. On
other days please leave a message and
Noreen will call you back.
Outreach services will continue to be
held in the counties of Cavan
Monaghan Meath and Louth. To meet
with Noreen at any of these venues you
must contact the Dundalk office to
make an appointment. The outreach
service are held in the Citizens
Information Centre’s in Navan, Cavan
and Monaghan. Monaghan Partnership
Community Offices in Castleblaney are
also used, as is the Irish Wheelchair
Association office in Drogheda. Thanks
to all of the above agencies for their
support of the Brainwave outreach
service.
The theme for National Epilepsy week
in 2007 is Epilepsy and Employment.
Events are planned for the North East
region focusing on the issue of
employment and involving agencies
who have a remit for employment.
More information will be made available
nearer the time. Meanwhile if you are a
parent of a young person with epilepsy,
a person with epilepsy or a professional
who is working with people with
disabilities in the training or
employment sector and would like to
get involved in organising an event in
the North East please do not hesitate
to contact Noreen.
If your organisation or the school your
child’s attends would like an epilepsy
awareness presentation, contact
Noreen on 042 93 37585. The
presentation usually last no longer than
one hour and covers the basic
information a person needs to know if
they are working with or likely to work
with a person with epilepsy.
A Happy, healthy and Peaceful new
year to all the members of Brainwave.
Noreen O’Donnell
CRO North East
Midwest
people with epilepsy. “The work,
though challenging at times, was
always rewarding and never dull!” She
feel’s that she has learnt so much
about epilepsy and about the
challenges of living with epilepsy.
During her time at Brainwave she has
met many inspirational people who
always focus on the positive and live
active, independent, happy lives
despite frequent seizures. Rebecca’s
new job involves providing advocacy
services to people with disabilities in
Galway city and county. Rebecca
would like to wish all the Brainwave
members in Mayo, Roscommon and
Galway the very best of luck in the
future with their epilepsy and with life in
general.
Southern Region
Support Group for Adults
Brainwave Cork is organising a
Support Group for ADULTS with
epilepsy on Tuesday night 13th March
at 7.30pm.
The meeting will take place in
Brainwave’s premises at 35,
Washington Street and will include a
presentation on epilepsy.
Support Group for Parents of
Children with Epilepsy
Gain information on epilepsy while
meeting other parents in similar
circumstances.
Come along on Wednesday night 14th
March at 7.30pm to Bishopstown GAA
Club in Cork.
Limerick
Outreach Office in Regional Hospital,
Dooradoyle, Limerick on the following
dates:
3rd March
5th May
15th March
17th May
7th April
2nd June
19th April
20th June
Best Wishes to
Rebecca Leavy
Rebecca Leavy,
Community Resource
Officer in the West
left Brainwave to
start a new job with
Comhairle. Rebecca has worked in
Brainwave for over three years and has
thoroughly enjoyed working with
15
For further details, please contact
Niamh Jones, Community Resource
Officer. Tel: 021 4274774.
South East
February 27th –
Enniscorthy Riverside Hotel
10.30am - 1pm
February 27th –
New Ross Brandon Hotel
2.30pm - 4.30pm
For further details, please contact
Deidre Commins, Community
Resource Officer.
Tel: 056 77844 96
www.epilepsy.ie
North West
Donegal
Support Group Meeting,
Monday 5th March 2007
Cheshire Apartments, Long Lane,
Letterkenny, Co Donegal at 8 o’clock.
Outreach
There will be one to one support
available at the following venues, by
appointment only
Please call Agnes Mooney on
074 91 68725 to make an
appointment.
Date: May 15th 2007
Venue: Teach Jack, Gweedore.
Time: 2.30pm to 4.30pm
Sligo
Coffee Morning
Information and Support
Date: To be confirmed
Venue: Northside Resource Centre
Time: 10.30pm to 12.30pm
Outreach
One to one confidential service in the
Library, Tubercurry, Co Sligo, by
appointment only, please call Agnes
Mooney on 071 91 46255 to make an
appointment.
Date: Monday March 26th 2007
Venue: Library, Tubercurry, Co Sligo
Time: 2p.m. to 4p.m.
Leitrim
Outreach
One to one confidential Service in the
Family Support Centre, Hyde Street,
Mohill, Co Leitrim, by appointment only,
please call Agnes Mooney on 071 91
46255 to make an appointment.
Venue: Mohill Family Support Centre
Date: April 2007.
Time 12p.m. to 2p.m.
Brainwave Hosts
Christmas Get
Together for
National Learning
Network Tullamore
BRAINWAVE,
THE IRISH EPILEPSY ASSOCIATION
MEMBERSHIP FEE IS JUST
¤ 12.70 ANNUALLY
MEMBERSHIP ENTITLEMENTS
As you may know, Brainwave - The Irish Epilepsy Association is Ireland’s main
source of information about epilepsy. It provides an excellent, well supported
education, training and information service.
Just some of the benefits membership of Brainwave offers you:
● free quarterly magazine
● a free pillow OR bracelet for new members
● access to Brainwave’s specialist staff
● access to Brainwave’s information network and support Groups
● educational literature
● opportunities to avail of pre-employment training courses
● access to the members area of the website www.epilepsy.ie
2007 Brainwave National Events
March
12th - 18th - Brain Awareness Week
August
10th - Horse Show Ball
May
20th - 26th - National Epilepsy Week
September
7th - Golf Classic in Dublin
28th - Training for Success Open Day
in Sligo Institute of Technology
October
Brainwave Rose Campaign
29th - Dublin City Marathon
June
4th - Dublin mini-marathon
November
3rd - National conference in Galway
On Tuesday 19th December Brainwave
The Irish Epilepsy Association hosted an
informal Christmas Get Together for
students and staff of the National Learning
Network Tullamore. The event took place in
Brainwaves office in The Heritage Centre
Bury Quay Tullamore. Margaret Bassett
Brainwaves Community Resource Officer
[midlands] played hostess and gave a short
but informative presentation on epilepsy to
the group. Margaret emphasised to the
gathering that Brainwave was in existence
to help people with epilepsy and to be
aware that everyones epilepsy is
unique.There are so many different types
of epilepsy.
The group were joined by friends of
Brainwave. They were Mary Green
GROW, Maria Fox Disability Federation Of
Ireland, Cllr Molly Buckley and Ann Cardiff
Brainwave Volunteer who provided
invaluable support.
The event was enjoyable and mince
pies and Christmas Spirit were present in
abundance. For more information on
epilepsy contact 057 93 28631
Margaret Bassett,
Community Resource Officer (CRO).
16
www.epilepsy.ie
MEMBERSHIP FORM
YES! I WISH TO JOIN OR RENEW MEMBERSHIP OF BRAINWAVE THE IRISH EPILEPSY ASSOCIATION.
PLEASE USE CAPITALS
Name: (Mr./Mrs./Miss./Ms)
Address:
Date of Birth of Person with Epilepsy:
(If renewing membership and you have a new address, please don’t forget to tell us your old address so we can remove/amend from our list)
Previous Address
E-mail Address:
Telephone: Daytime:
Evening:
HOW TO PAY YOUR SUBSCRIPTION.
Membership subscription is ¤12.70 Annually
BY CHEQUE OR POSTAL ORDER
I wish to pay my subscription by Cheque / Postal Order. My Cheque / Postal Order for ¤
is enclosed
(Cheques should be made out to I.E.A.)
I want to help continue the work of Brainwave and I would also like to make a donation to the Association
¤ 7 .30 ❑
¤ 1 5.00 ❑ ¤ 2 0.00 ❑
¤ 3 0.00 ❑ ¤ 6 5.00 ❑
¤ 1 00.00 ❑
Own Amount ¤
TOTAL PAYMENT¤
Please return the completed form to: Brainwave, Irish Epilepsy Association, 249 Crumlin Road, Dublin 12
OUR SINCERE THANKS FOR YOUR SUPPORT
OR I AM PAYING BY THE STANDING ORDER FACILITY THROUGH MY BANK
AND / OR would like to make a DONATION of ¤ 7 .30 ❑
¤10 ❑
¤20 ❑
¤50 ❑
other
I would also like to get the free epi alert identity bracelet ❑ OR Safety pillow ❑ (for new members only)
Please return this form with postal order/cheque payable to Brainwave, The Irish Epilepsy Association.
If you are using the Standing Order Facility, the details of our account is:
BANK OF IRELAND, ACCOUNT NO: 88644504, SORT CODE 90-02-87,
BRAINWAVE, IRISH EPILEPSY ASSOCIATION.
Please instruct your bank that you want to set up standing order for your membership fee.
Instructions to your Bank to pay the Brainwave Standing Order:
To the Manager (your bank)
Bank Address
, Bank Sort Code
Please pay Brainwave, Irish Epilepsy Association, Bank of Ireland, NSC 90-02-87, Account Number 88644504
The sum of ¤
each year, starting on _____/______ 2007
Name
Address
Signature
Please bring this last section of the to your bank if you are using the standing order facility.
THANK YOU

In This Issue: • Postcard Campaign • Presentation to the Oireachtas

Transcription

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