In This Issue: • Postcard Campaign • Presentation to the Oireachtas
Transcription
In This Issue: • Postcard Campaign • Presentation to the Oireachtas
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: [email protected] 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 Brainwave the irish epilepsy association 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 Epilepsy News Issue 37 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 Brainwave the irish epilepsy association 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. Epilepsy News Issue 37 • 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 Epilepsy News Issue 37 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 Hanna NJ, Black M, et al. National Sentinel Clinical Audit of Epilepsy-Related Death. Epilepsy- death in the shadows. The Stationary office Report 2002 15 Hanna NJ, Black M, et al. National Sentinel Clinical Audit of Epilepsy-Related Death. Epilepsy- death in the shadows. The Stationary office Report 2002 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 Epilepsy News Issue 37 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 Paid by: The Department of Social 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 Paid by: The Department of Social 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. Epilepsy News Issue 37 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 Brainwave the irish epilepsy association 2006 Picture Review 1 2 3 4 5 6 7 8 Epilepsy News Issue 37 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 Epilepsy News Issue 37 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 Brainwave the irish epilepsy association 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 Epilepsy News Issue 37 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 LAMICTAL DISPERSIBLE PCO Manufacturing Limited PPA0465/092/007A 100 Milligram Tablets LAMICTAL DISPERSIBLE PCO Manufacturing Limited PPA0465/092/006A 25 Milligram Tablets LAMICTAL DISPERSIBLE TABLETS 100MG GlaxoSmithKline (Ireland) Ltd PA1077/061/009 100mg Milligram Tablets LAMICTAL DISPERSIBLE TABLETS 200MG GlaxoSmithKline (Ireland) Ltd PA1077/061/010 200 Milligram Tablets LAMICTAL DISPERSIBLE TABLETS 25 MG GlaxoSmithKline (Ireland) Ltd PA1077/061/007 25mg Milligram Tablets LAMICTAL DISPERSIBLE TABLETS 50MG GlaxoSmithKline (Ireland) Ltd PA1077/061/008 50 Milligram Tablets LAMICTAL DISPERSIBLE TABLETS 5MG GlaxoSmithKline (Ireland) Ltd PA1077/061/006 5 Milligram Tablets LAMICTAL TABLETS 100MG GlaxoSmithKline (Ireland) Ltd PA1077/061/003 100 Milligram Tablets LAMICTAL TABLETS 200 MG GlaxoSmithKline (Ireland) Ltd PA1077/061/004 200 Milligram Tablets LAMICTAL TABLETS 25 MG GlaxoSmithKline (Ireland) Ltd PA1077/061/001 25 Milligram Tablets LAMICTAL TABLETS 50 MG GlaxoSmithKline (Ireland) Ltd PA1077/061/002 50 Milligram Tablets LAMORO Arrow Generics Limited PA1130/006/001 2 Milligram Tablets LAMORO Arrow Generics Limited PA1130/006/004 50 Milligram Tablets LAMORO Arrow Generics Limited PA1130/006/002 5 Milligram Tablets LAMORO Arrow Generics Limited PA1130/006/006 200 Milligram Tablets LAMORO Arrow Generics Limited PA1130/006/005 100 Milligram Tablets LAMORO Arrow Generics Limited PA1130/006/003 25 Milligram Tablets LAMOT McDermott Laboratories Ltd t/a Gerard Laboratories PA0577/077/001 25 Milligram Tablets LAMOT McDermott Laboratories Ltd t/a Gerard Laboratories PA0577/077/002 50 Milligram Tablets LAMOT McDermott Laboratories Ltd t/a Gerard Laboratories PA0577/077/003 100 Milligram Tablets LAMOT McDermott Laboratories Ltd t/a Gerard Laboratories 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 GlaxoSmithKline (Ireland) Ltd PA1077/110/003 25 Milligram Tablets LAMOTRIGINE GlaxoSmithKline (Ireland) Ltd PA1077/110/005 100 Milligram Tablets LAMOTRIGINE GlaxoSmithKline (Ireland) Ltd PA1077/110/002 5 Milligram Tablets LAMOTRIGINE GlaxoSmithKline (Ireland) Ltd PA1077/110/004 50 Milligram Tablets LAMOTRIGINE GlaxoSmithKline (Ireland) Ltd PA1077/110/001 2 Milligram Tablets LAMOTRIGINE GlaxoSmithKline (Ireland) Ltd 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 Epilepsy News Issue 37 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 Epilepsy News Issue 37 Dressing Room Mugging 12 www.epilepsy.ie Upcoming Events... 2007 Ladies Mini Marathon Epilepsy News Issue 37 13 www.epilepsy.ie Brainwave the irish epilepsy association 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 Epilepsy News Issue 37 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 Epilepsy News Issue 37 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 Brainwave the irish epilepsy association 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 Epilepsy News Issue 37 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 Brainwave the irish epilepsy association 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