Prepared as part of the Joint Epilepsy Council Good Practice Initiative

Transcription

1 Prepared as part of the Joint Epilepsy Council Good Practice Initiative A Section 64 Funded Project.

2 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy Prepared as part of the Joint Epilepsy Council Good Practice Initiative A Section 64 Funded Project.

3 This publication has been produced as part of the Joint Epilepsy Council (JEC) Good Practice Initiative, a Section 64 funded project. The Section 64 General Scheme (Section 64 of the Health Services and Public Health Act 1968) represents the greatest single source of financial support that the Department of Health provides to the voluntary sector. The JEC Good Practice Initiative seeks to focus on the implementation and/or barriers to implementation of good practice guidelines for epilepsy care in England. Authors: Frost S, Crawford P, Mera S, Chappell B. First published: March Joint Epilepsy Council Registered Charity No: Designed and typeset by Clockwork Communications WA3 3HP Printed in the UK by Gemini Print (Wigan) Ltd. WN4 8DT If you require further copies of the publication please contact: Joint Epilepsy Council c/o Mersey Region Epilepsy Association Glaxo Neurological Centre Norton St Liverpool L3 8LR This document is also available in pdf format on the JEC website: The Joint Epilepsy Council of the UK and Ireland (JEC) is an umbrella body that exists to enable 21 organisations to work together for the benefit of people with epilepsy. Referencing This National Statement should be cited as follows: FROST S, CRAWFORD P, MERA S and CHAPPELL B (2002) National Statement of Good Practice for the Treatment and Care of People who have Epilepsy. Joint Epilepsy Council.

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5 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy Grades of recommendation - Typology of Supporting Evidence Evidence from Research and other professional literature: A1 Systematic reviews which include at least one Randomised Control Trial (RCT) (e.g. Systematic Reviews from Cochrane or Reviews and Dissemination) A2 Other systematic and high quality reviews which synthesise references B1 Individual RCTs B2 Individual non-randomised, experimental/intervention studies B3 Individual well-designed non-experimental studies, controlled statistically if appropriate; includes studies using case control, longitudinal, cohort, matched pairs, or cross-sectional random sample methodologies, and welldesigned qualitative studies; well-designed analytical studies including secondary analysis C1 Descriptive and other research or evaluation not in B (e.g. convenience samples) C2 Case studies and examples of good practice D Summary review articles and discussions of relevant literature and conference proceedings not otherwise classified Evidence from expert opinion: P U C Professional opinion based on clinical evidence, or reports of committees User opinion from Service Users Reference Group or similar Carers opinion from Carers Focus Group or similar Adopted from Typology of Supporting Evidence in National Service Framework for Older People, Department of Health, March 2001 (page 11). 20 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

6 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy Contents 1 Introduction Rationale BACKGROUND THE EPILEPSIES AND COMMISSIONING Key Interventions ) IMMEDIATE CARE A Integrated epilepsy care B Diagnosis C Investigations D Non-epileptic seizures E Communicating a diagnostic decision F Early follow-up G Starting treatment H Anti-epileptic drugs (AEDs) I Potential social and psychological issues J Information and education needs of individuals and their family ) CONTINUING CARE A On-going Care B Specific areas of care ) REMISSION A Making a decision B Discussing the potential risks and implications C Withdrawing therapies ) SPECIALIST SERVICE REQUIREMENTS AND THE ROLE OF GENERAL PRACTICE A Specialist Epilepsy Services (within integrated care) B The Role of General Practice (within integrated care) ) EDUCATION AND MONITORING A Relevant professional education B Monitoring epilepsy services References Acknowledgements Appendices EPILEPSY CARE PATHWAY GRADES OF RECOMMENDATION - TYPOLOGY OF SUPPORTING EVIDENCE National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 1

7 Foreword Much more could be done to improve health care and quality of life for people with epilepsy including raising professional awareness, designing a proper framework for care, ensudng that standards of local services are higher and more consistent... (Annual Report of the Chief Medical Officer of the Department of Health, 2001) This comment, made by Chief Medical Officer, Liam Donaldson, highlights the Department of Health s recognition of the need for improved health services for epilepsy. This National Statement of Good Practice p r ovides a series of recommendations for attaining high quality National Health Service treatment and care for people with epilepsy in England. The 1990s saw an increased interest in epilepsy care provision and numerous publications were produced. This National Statement of Good Practice attempts to consolidate all the information and evidence from this previous work in one concise document. All the recommendations made within this National Statement are based on data collected and views expressed in previous work with people with epilepsy, their families and professionals working in the field. By placing an emphasis on medical, social and psychological care, this National Statement reflects the fact that epilepsy has the potential to affect individuals and their families in many areas of their lives. The National Service Framework for Long Term Health Conditions is due to be implemented in 2005, therefore this National Statement provides a timely opportunity to review the design and delivery of epilepsy services. This should help to ensure that the treatment and care received by people with epilepsy meets their individual needs. I hope you find this National Statement a valuable and useful resource for improv i n g e p i l e p sy services and I warmly welcome its publication. Baroness Gould of Potternewton Chair, All Party Group on Epilepsy 2 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

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9 4. References 20. Epilepsy Task Force and JEC. Burden of Epilepsy: A Health Economics Perspective. April 1999a. 21. Epilepsy Task Force and JEC. UK Epilepsy Service Provision: A National Audit of Services. April 1999b. 22. Epilepsy Task Force and JEC. Purchasing and Providing Epilepsy Outpatient Services: A Guide to Good Practice, July Epilepsy Association of Scotland. Epilepsy Checklist, cited in Taylor Epilepsy Advisory Board, Epilepsy Care: Making it Happen, British Epilepsy Association Epilepsy Working Group. Guidelines for Epilepsy. Second Edition. Doncaster First Seizure Trial Group (FIR.S.T. Group). Randomized clinical trial on the efficacy of antiepileptic drugs in reducing the risk of relapse after a first unprovoked tonic-clonic seizure. Neurology 1993 Mar;43(3 Pt 1): Griffin J. Epilepsy: Towards Tomorrow. London: Office of Health Economics Studies of Current Health Problems No Hauser WA and Annegers JF. Incidence of Epilepsy and Unprovoked Seizures in Rochester, Minnesota: Epilepsia , 3, , 29. Heller AJ, Chestermann P, Elwes RD, Crawford P, Chadwick D, Johnson AL. Phenobarbitone, phenytoin, carbamazepine or sodium valproate for newly diagnosed adult epilepsy: a randomised comparative monotherapy trial. Journal Neurology Neurosurgery and Psychiatry 1995; 58: Jacoby A, Baker GA, Steen N, Potts P, Chadwick DW. The clinical course of epilepsy and its psychosocial correlates: findings from a U.K. Community study. Epilepsia 1996 Feb;37(2): Jain P, Patterson V and Morrow J. What people with epilepsy want from a hospital clinic. Seizure, 1993, 2: King DW, Gallagher BB, Murvin AJ, Smith DB, Marcus DJ, Hartlage LC. Pseudoseizures: Diagnostic evaluation. Neurology 1982; 32: Mattson RH, Cramer JA, Collins JF, Smith DB, Delgado-Escueta AV, Browne TR. Comparison of carbamazepine, Phenobarbital, phenytoin and primidone in partial and secondarily generalised tonic-clonic seizures. N Eng J Med 1985; 313: Mattson RH, Cramer JA, Collins JF. A comparison of valproate with carbamazepine for the treatment of complex partial seizures and secondarily generalised tonic clonic seizures in adults. N Eng J Med 1992; 327: Morgan C, Ahmed Z, and Kerr M. Social Deprevation and prevalance of epilepsy and associated health useage. Journal of Neurology, Neurosurgery and Psychiatry 2000;69: Nashef L, Fish DR, Sander JW, Shorvon S. Incidence of sudden unexpected death in an adult outpatient cohort with epilepsy at a tertiary referral centre. Journal of Neurology, Neurosurgery and Psychiatry. 1995; 58: Parker AP, Agathonikou A, Robinson RO, Panayiotopoulos CP. Inappropriate use of carbamazepine and vigabatrin in typical absence seizures. Dev Med Child Neurol 1998 Aug;40(8): National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

10 ) Immediate Care Aims To improve the clinical management of epilepsy with particular emphasis on the role of integrated care. To recognise the importance of, and to improve, social and psychological management. Standards 3.1A Integrated epilepsy care a) All people experiencing seizures should have rapid access to diagnostic services and appropriate treatment (Brown et al, 1998; CSAG, 1999). GRADE P b) Planned integrated care covering general practice and specialist epilepsy services is the preferred model of care (Epilepsy Working Group, 1995; CSAG, 1999). GRADE C2 c) A Patient Held Record where all parties recognise their role should be deve l o p e d for each person. This plan should address the clinical, social and psyc h o l o g i c a l needs of the individual. Copies of this plan should be held by all concerned, including the person with epilepsy or their guardian. GRADE P and U 3.1B Diagnosis a) All service users presenting with a first seizure should be seen within 28 days of referral (Brown et al, 1993; Epilepsy Task Force 1998; Epilepsy Advisory Board, 2000) to a specialist with an interest in epilepsy. GRADE P & U b) Specialist services should be encouraged to organise first seizure clinics, where investigations and consultation/s can take place on the same day. GRADE P c) The misdiagnosis rate for epilepsy has been estimated to be around 20-30% (Scheepers et al, 1998; Wallace et al, 1997; GRADE P); therefore all pertinent information should be collected and extreme care taken before making a diagnosis. The medical history and eyewitness accounts are still the most important pieces of information (SIGN, 1997; Taylor, 2000). GRADE B3 d) A level three diagnosis (e.g. a syndromic diagnosis) should be made wherever possible. If not, level two should be attained (e.g. seizure type/s). A diagnosis of simply epilepsy is very rarely, if ever, justified (SIGN, 1997). GRADE P 3.1C Investigations All appropriate investigations need to be conveniently available within 28 days (Brown et al, 1998; Epilepsy Advisory Board, 2000). This will help the physician to make decisions quickly and safely, especially concerning the initial diagnosis. Investigatory delays that consequently delay clinical decisions are unacceptable. GRADE P & U National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 5

11 D Non-epileptic seizures Non-epileptic seizures are more common than once thought (King et al, 1982). All staff of each service should be sensitive to the potential diagnosis of non epileptic seizures and, where appropriate, be able to contribute towards their diagnosis. There are few staff in England that specialise in this area of care. Re l e vant referral needs to be considered, if and when local knowledge is insufficient. GRADE P 3.1E Communicating a diagnostic decision An individual s feelings on receiving a diagnosis of epilepsy should be respected. Communicating the diagnostic decision appropriately is arguably as important as making the initial decision itself. Individuals need to be informed fully about their diagnosis and its potential implications, (Cooper and Huitson, 1986; Risdale et al, 1996; Wallace et al, 1997) therefore adequate time should always be allowed for reaction and questions. Privacy is essential. Where needed, access should be provided to other sources of support (Risdale et al, 1996; SIGN, 1997; Wallace et al, 1997; Brown et al, 1998; Epilepsy Task Force, 1998). GRADE P & U 3.1F Early follow-up a) Support systems should be in place to provide help and information within 7 days of diagnosis. All service users should be able to access relevant follow up with a professional who has the required experience. GRADE P & U b) This should provide both opportunity for the service user to ask questions about their concerns and for the professional to confirm the facts and issues raised by the diagnosis. GRADE P & U 3.1G Starting treatment a) People should not be treated if there is uncertainty about the diagnosis (SIGN, 1997). Inappropriate treatment can worsen seizure disorders (Parker et al, 1998). GRADE C1 b) It should not be assumed that everyone diagnosed with epilepsy will want treatment. This matter should always be explored, as non-compliance with prescribed therapies is a major issue (Stanaway et al, 1985). How treatment works should always be explained. GRADE B3 c) Unlike other diagnoses, people with a certain diagnosis of unprovo k e d generalised tonic-clonic seizures should be offered treatment after the first seizure, if the seizures are associated with previous myoclonic and/or absence seizures (FIR. S.T. Group, 1993). GRADE A1 d) The decision to treat other seizure types may depend on the seizure frequency and severity (SIGN, 1997). GRADE P e) Seizures arising from alcohol withdrawal and other metabolic or drug-related causes or sleep deprivation should not routinely be treated with AEDs. Treatment may be considered if there are recurrences suggestive of epilepsy (SIGN, 1997). GRADE P f) All people developing seizures as a consequence of head injury should be treated but drug withdrawal should be subsequently considered (SIGN, 1997). GRADE P 6 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

12 4 References 1. Annegers JF, Hauser WA, Elveback LR. Remission of Seizures and Relapse in Patients with Epilepsy. Epilpesia, 20, , Anti Epileptic Drug Withdrawal Study Group. Randomised study of antiepilepetic drug withdrawal in patients in remission. Lancet, 1991 May 18, Vol. 337, Issues 8751, p Anti Epileptic Drug Withdrawal Study Group. Prognostic index for recurrence of seizures after remission of epilepsy. British Medical Journal, 1993 May 22, Vol. 306, p Austin JK, Huberty TJ, Huster GA, Dunn DW. Academic achievement in children with epilepsy or asthma. Dev Med Child Neuro l 1998 Apr;40(4): Berg A, Shinnar S and Chadwick D. Discontinuing Antiepileptic Drugs. Chp 115 in, Epilepsy: A Comprehensive Textbook, edited by Engel J and Pedler T. 1997, Lippincott-Raven Publishers, Philadelphia. 6. Betts T. Sniffing the Breeze (Aromatherapy Advice Sheet written for BEA) Boden S, Betts T, and Clouston T Use of olfactory stimuli (aromatherapy) to successfully control epileptic seizures. Acta Neurologica Scandinavica volume 82 (Suppl 133) page Boyle DIR, Morris AD and McDonald TM. A record linkage capture-recapture technique to create a diabtes disease register for epidemiological research British Epilepsy Association (BEA). An Agenda for Action British Medical Association and the Royal Pharmaceutical Society of Great Britain. British National Formulary London. 11. Brodie MJ, Richens A, Yuen AW. Double-blind comparison of lamotrigine and carbamazepine in newly diagnosed epilepsy. UK Lamotrigine/Carbamazepine Monotherapy Trial Group. Lancet 1995 Feb 25;345(8948): Brown S, Betts T, Chadwick D, Hall B, Shorvon S, Wallace S. An Epilepsy Needs Document. Seizure 1993; 2: B r own S, Betts T, Crawford P, Hall B, Shorvon S, Wallace S. Epilepsy Needs revisited: a revised epilepsy needs document for the UK. S e i z u re 1998; 7: B r own SW, Lee P, Buchan S, Jenkins A. A 2 year follow-up of NHS Executive Letter 9 5 / 1 20: where is the commitment to quality? S e i z u re 1999 Apr;8(2): Clinical Standards Advisory Group (CSAG). Services for patients with epilepsy Cockerell OC, Hart YM, Sander JWAS, Shorvon SD. The cost of epilepsy in the United Kingdom: an estimation based on the results of two population based surveys. Epilepsy Research, 1994a;18: Cockerell OC, Johnson A, Hart YM, Goodridge DM, Sander JWAS, Shorvon SD. Mortality from epilepsy: results from a prospective population-based study. Lancet 1994b. 344: Collings JA. International differences in psychosocial well-being: a comparative study of adults with epilepsy in three countries. Seizure 1994 Sep;3(3): Cooper GL, Huitson A. An Audit of the management of patients with epilepsy in thirty general practices. J R College of General Practitioners. 1986;36: National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 15

13 3.1 Epilepsy Antiepileptic drug Seizure Lifestyle information (AED) information Triggers Implications Aetiology AED Regime Lack of sleep Driving Classification Side effects Alcohol withdrawal Work Epidemiology Compliance Stress Education Prognosis Missed Doses Illness Leisure Inheritance Free prescriptions Reflex stimuli Safety SUDEP* Drug Interactions Contraception Seizure diary Withdrawal Pre-conception *Sudden unexplained Death Parenting in Epilepsy Psychological First Aid Voluntary implications Organisations Felt and enacted stigma Complex partial seizures Contact details and Stress Tonic-clonic seizures information about services Mood changes Status epilepticus provided by voluntary Family relationships organisations is available Other relationships from the Anxiety Depression Joint Epilepsy Council, c/o Mersey Region Epilepsy Association, Glaxo Neurological Centre, Norton Street Liverpool L3 8LR. (Adopted from SIGN, 1997; Epilepsy Association of Scotland Epilepsy Checklist ; CSAG, 1999). GRADE C1 Information on all these topics is available from the voluntary sector. Specialist Epilepsy Nurses have an important role in this information provision (Taylor, 2000; Wallace et al, 1997; Scambler et al, 1996). 8 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

14 B The Role of General Practice (within integrated care) General practice has a vital role in the management of epilepsy, especially in the co-ordination of care with particular emphasis on social, psychological and emotional support. General practice should provide: a) A comprehensive standard protocol for referral that helps to secure an accurate diagnosis. b) Access to the best available specialist epilepsy service within reasonable travelling distance. c) Support pre and post the diagnosis of epilepsy. d) Guidance about accessing information by using resources such as specialist nurses, local and national voluntary organisations. e) Prescription and adjustment of AEDs should be recorded in the individuals Patient Held Record. f) Regular review of individuals on a practice register dependent on severity and changing circumstances. This should be at least annually for all. g) Re-referral to specialist services when appropriate, i.e. poor control of seizures, adverse events, withdrawal of AEDs, pre-conception etc. (Taylor, 2000; CSAG, 1999). GRADE C2 The prevalence of active epilepsy is 5-10 per 1,000 persons. (Sander and Shorvon, 1996; CSAG, 1997; Brown et al, 1993) National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 13

15 3.2 II) Vagal nerve stimulation Vagal nerve stimulation may be a useful treatment for some individuals. GRADE B1. It is a treatment option that should be considered at a similar time to neurosurgical options (Schachter and Saper, 1998). GRADE P III) Complementary (Alternative) therapies There is no data to support the use of complementary therapies instead of AEDs, but there is data to suggest (Betts, 1995) that used in combination with AEDs (complementary) they may benefit some people (Taylor, 2000). This is especially so in those with associated anxiety and depression (Boden et al, 1990). GRADE D e) Social and psychological care Professionals should avoid concentrating on clinical issues if the individual s agenda is different. It is likely that social and psychological issues will be high on the individual s agenda at differing times (CSAG, 1999; BEA, 2000). GRADE C1. Individuals should be referred to appropriate information and support services (Epilepsy Advisory Board, 2000; Wallace et al, 1997). GRADE B3 f) Information needs Continuing information and education needs of individuals and their family may vary dependent on the clinical, social and psychological outcome of early care. Continuing care should recognise the importance of accurate information (SIGN, 1997; Cooper and Hutson, 1986; Jain et al, 1993; Risdale, 1996). GRADE P Epilepsy is as common as insulin-dependent diabetes. (Boyle et al 1998) 10 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

16 ) Remission Aim To increase the number of people who successfully withdraw from therapy. Standards 3.3A Making a decision Withdrawal of medication is possible under certain circumstances as it has been shown that twenty years from diagnosis approximately 50% of people will be seizure free and off medication (Annegers and Hauser, 1979). Deciding when remission actually occurs is difficult but it is sensible to discuss withdrawal after two years seizure free (AED Withdrawal Study Group, GRADE B1; Taylor, 2000). A decision to start withdrawal of therapy should consider all relevant factors and importantly involve the complete co-operation of the individual (SIGN, 1997; Taylor, 2000). 3.3B Discussing the potential risks and implications A recurrence of one seizure may have massive implications (for employment, education, driving etc.) therefore each individual should be fully informed through extensive discussion and information provision (Taylor, 2000; SIGN, 1997). GRADE P 3.3C Withdrawing therapies All AEDs should be withdrawn gradually (Taylor, 2000), especially the barbiturates and benzodiazepines (Berg et al, 1997). GRADE A2 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 11

17 ) Specialist Service Requirements and the Role of General practice Aims To outline the multidisciplinary team that is required to provide quality epilepsy services. To describe how general practice should contribute to quality epilepsy care. Standards 3.4A Specialist Epilepsy Services (within integrated care) a) Dependent on the group of service users, the lead physician should be a consultant with a specialist interest and experience in epilepsy from a relevant speciality (Epilepsy Task Fo r c e, 1998; CSAG, 1999; Epilepsy Advisory Board, ). GRADE P & U NB: A particular interest in epilepsy requires substantial experience in the treatment and care of a wide range of people with epilepsy plus a commitment to ongoing professional education. b) Integrated epilepsy care should also include the following: I. Swift access to appropriate Neurophysiology and Neuroimaging services, e.g. MRI and video-telemetry. II. Specialist Epilepsy Nursing. III. Well developed links to other professional services. e.g. Appropriate in-patient facilities, Psychology, Psychiatry, Social Work, Occupational Therapy, Counselling, Neurosurgical services (traditional, vagal nerve stimulation and gamma knife) and Complementary Therapists. IV. Access to information, support and other services from the voluntary sector (Brown, 1998; CSAG, 1999). GRADE P & U c) Some people may require access to the following additional services: I Clinical psychology (especially for neurosurgical assessment). II Research services, i.e. new therapies in development (Brown et al, 1998). GRADE P 12 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

18 ) Continuing Care Aim To improve the medium and long term quality of life for those with epilepsy, whether seizure free or not. Standards 3.2A On-going Care Planned integrated care spanning general practice and specialist epilepsy services should continue (Epilepsy Working Group, 1995; CSAG, 1999). GRADE C2 The Patient Held Record where all parties recognise their role should continue. GRADE P 3.2B Specific areas of care a) Diagnosis If seizures are continuing the diagnosis should be reviewed and other differential diagnoses ruled out (SIGN, 1997; Epilepsy Task Force, 1998; Scheepers et al, 1998). GRADE B3 b) Investigations Where relevant, rapid access should be available to further pertinent investigations. These may be new investigations or repeats of previous in an attempt to find new information concerning causation, syndrome or any other relevant reason. GRADE P c) AEDs Where the first choice or choices of AEDs have been unsuccessful the specialist team should carefully consider other alternative monotherapy or reasoned polytherapy (Heller et al, 1995; Richens et al, 1994; Turnbull et al, 1985; Mattson et al, 1985: Mattson et al, 1992) GRADE A1 d) Non-pharmaceutical treatment I) Neurosurgery All services should provide access to neurosurgery as there is a significant group of people who do not respond satisfactorily to AEDs who will benefit from neurosurgery if selected correctly (Wieser, 1998). GRADE A2 Services should purchase neurosurgical services from specialist centres. Certain cases of lesional epilepsy may be directly amenable to neurosurgical treatment after suitable work up. Neurosurgery should be considered in ALL client groups after two years of unsuccessful AED treatment (SIGN, 1997; Taylor, 2000; Wallace, 1997; CSAG, 1999). GRADE P National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 9

19 ) Education and Monitoring Aims To improve the professional development of people who work in the epilepsy field. To improve epilepsy services through review and reflection. Standards 3.5A Relevant professional education Staff within the Specialist Service should show a commitment to ongoing professional education in epilepsy. A recognised qualification in epilepsy and membership of an appropriate professional body is desirable. e.g. International League Against Epilepsy (ILAE) or Epilepsy Specialist Nurses Association (ESNA). GRADE P & U 3.5B Monitoring epilepsy services All epilepsy services should be audited once every five years. Audit protocols for local adaptation are contained within the document, Adults with Poorly Controlled Epilepsy by Wallace et al (1997) available from the Royal College of Physicians, London. GRADE P & U I For an epilepsy service generally Audit Measures for the Organisation of an Epilepsy Service II For individuals with epilepsy Audit Protocol for the Case Notes of a Patient with Epilepsy. 14 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

20 H Anti-epileptic drugs (AEDs) AEDs are the first line treatment for epilepsy. There is now additional choice in the range of AEDs. Principally the choice of AED should be based on the most appropriate for the person s seizure type/s and syndrome, their age and sex (Taylor, 2000). Associated consideration should be given to potential adverse effects. There is now a wide variance in the cost of AEDs (British National Formulary, 2001.) Where there is clear evidence that an individual will benefit from a more expensive AED this should not be denied due to budgetary constraints. Although there is no evidence to suggest that one AED is generally more efficacious that any other, there is evidence (Heller et al, 1995; Richens et al, 1994; Turnbull et al, 1985; Mattson et al, 1985; Mattson et al, 1992) that some are more efficacious for certain seizure types and syndromes. There is evidence that some have better adverse event profiles (Richens et al, 1994; Mattson et al, 1992; Brodie et al, 1995). GRADE A1 3.1I Potential social and psychological issues Common social issues Many people with epilepsy rate social implications as a major problem (Taylor, 2000; Collings, 1994). Where the law allows, suggestions should be made as to how people can safely partake or participate in the normal range of social activities. GRADE C1 Common psychological issues Epilepsy has psychological implications for some people (CSAG, 1999; Jacoby et al, 1996). This should be at the forefront of the service provider s agenda. A positive attitude communicated by the service provider can be very helpful. More common topics that require addressing are, felt and enacted stigma, s t r e s s, mood changes (including depression), and family and other relationships. GRADE B3 3.1J Information and education needs of individuals and their family. What and when? a) The information needs of people with epilepsy and their family are diverse in terms of content and relevance to the individual, and the timing of provision. The following checklist is offered as an aide memoire to ensure that needs are fully explored, if and when relevant: National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 7

21 There is a risk of increased morbidity (Sillanpaa, 1992; Griffin, 1991) (i.e. short and long term consequences of seizures and/or treatment and the effects of social depravation and increased mortality (Nashef et al, 1995) (twice that of the general population) (Cockerell et al, 1994b; CSAG 1999). The person with epilepsy is also more prone to accidents and concurrent illness (Epilepsy Task Force, 1999a) and educational under achievement (Austin et al, 1998). Service provision for epilepsy is fragmented throughout England (Epilepsy Task Force, 1999b, CSAG 1999). There is also to date a lack of commitment to the commissioning of specific epilepsy services (Brown et al, 1999). Previous authors (e.g. Brown et al, 1998) have suggested that specific services for epilepsy should be available for all people. 3 Key Interventions This Statement sets out 5 main components for the development of integrated epilepsy services; 3.1) Immediate Care 3.2) Continuing Care 3.3) Remission 3.4) Specialist Service Requirements and the Role of General Practice 3.5) Education and Monitoring 4 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

22 4. References 38. Richens A, Davidson DL, Cartlidge NE, Easter DJ. A multi-centre comparative trial of sodium valproate and carbamazepine in adult onset epilepsy. J Neurology Neurosurgery Psychiatry. 1994;57: Risdale L, Jeffery S, Robins D, McGee L, Fitzgerald A. Epilepsy Care Evaluation Group. Epilepsy monitoring and advice recorded: general practitioners views, current practice and patients preferences. British Journal of General Practice 1996;46: Sander JWAS and Shorvon SD. Epidemiology of the epilepsies. Journal of Neurology, Neurosurgery and Psychiatry 1996;61: Scambler A, Scambler G, Risdale L, Robins D. Towards an evaluation of the effectiveness of an epilepsy nurse in primary care. Seizure 1996;5: Schachter S and Saper C. Progress in Epilepsy Research - Vagus Nerve Stimulation. Epilepsia, Volume 39, Supplement 7, p , Scheepers B, Clough P, Pickles C. The misdiagnosis of epilepsy: findings of a population study. Seizure 1998 Oct;7(5): Scottish Intercollegiate Guidelines Network (SIGN), Diagnosis and Management of Epilepsy in Adults: A National Clinical Guideline recommended for use in Scotland, Pilot Edition, Sillanpaa M. Epilepsy in children: preva l e n c e, disability, and handicap. 1: Epilepsia 1992 May;33(3): Stanaway L, Lambie DG, Johnson RH. Non compliance with anti-convulsant therapy as a cause of seizures. NZ Medical Journal 1985;98: Taylor MP. Managing Epilepsy: A Clinical Handbook, Oxford, Blackwell Science, Turnbull DM, Howel D, Rawlins MD, Chadwick DW. Which drug for the adult epileptic patient: phenytoin or valproate? British Medical Journal 1985, 290: Wallace H, Shorvon SD, Hopkins A, O Donoghue M. Adults with poorly controlled epilepsy. London, Royal College of Physicians, Wallace H, Shorvon S, Tallis R. Age-specific incidence and prevalence rates of treated epilepsy in an unselected population of 2,052,922 and age-specific fertility rates of women with epilepsy. L a n c e t 1998 Dec 19;352( ) : Wieser HG. Epilepsy Surgery: past, present and future. S e i z u re 1998; 7: National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 17

23 5. Acknowledgements 5. Acknowledgements Research Team: Steering Group Members: Sarah Frost Professor Stephen Brown Chair Brian Chappell Sue Thomas Professor Pamela Crawford Pat Noons Dr Stephen Mera Dr David McCormick Jim Oates Mike Harnor Dr Ley Sander Dr Keith Redhead Peter Rogan JEC Julie Tickle Hilary Mountfield The Research Team would like to thank the members of the Steering Group for their valuable input throughout the course of the project. Thanks must also go to the Joint Epilepsy Council for initiating and organising the project and to the Department of Health for providing funding through the Section 64 scheme. Last but not least, thanks to Mike Moran, Dr Henry Smithson and Dr Malcolm Taylor who provided advice on the structure and content of the National Statement. 18 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council

24 National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 1 Introduction 1.1 Aims and scope of the National Statement The aim of this National Statement is to provide a series of recommendations for attaining high quality National Health Service care for people with epilepsy in England. The statement is principally aimed at facilitating commissioning and will therefore be of use to purchasers, providers and service users. Epilepsy has the potential to affect individuals and their families in many areas of their lives, e.g. education, employment and relationships (Taylor, 2000; BEA, 2000). This National Statement reflects this by placing an emphasis on medical, social and psychological care. 2 Rationale 2.1 Background The 1990s saw an increasing interest in the epilepsies and care provision. There were numerous publications (Service Development Kit, Epilepsy Care: Making it Happen, Adults with Poorly Controlled Epilepsy, CSAG Report, SIGN Guidelines) and this National Statement attempts to take all the information from this previous work and consolidate the evidence in one brief document. All the recommendations made here are based on the data collected and views expressed in this previous work with people with epilepsy, their families and professionals working in the field. Epilepsy is the most common of the serious neurological conditions (Brown et al, 1998) In preparing this National Statement, the Clinical Standards Advisory Group Report (CSAG) and Scottish Intercollegiate Guidelines Network (SIGN) documents were initially consulted, both of which had a thorough literature search strategy of their own. Further MEDLINE searches were carried out and standard textbooks and other important reports (e.g. Epilepsy Task Force Survey) were also consulted. 2.2 The epilepsies and commissioning Epilepsy is the most common of the serious neurological conditions (Brown et al, 1998). It affects over 300,000 people in the UK (Cockerell et al, 1994a). Its estimated incidence is around per 100,000 persons per annum (Wallace et al, 1998, Hauser and Annegers, 1993; Brown et al, 1998). This means that in the average Primary Care Trust of 250,000 people between will develop epilepsy per annum. The incidence is greater in children and older people (Hauser and Annegers, 1993, Brown et al, 1998). The prevalence of active epilepsy is 5-10 per 1,000 persons (Sander and Shorvon, 1996; CSAG 1999; Brown et al, 1993). It is as common as insulin dependent diabetes (Boyle et al 1998). Around 70% of people have the potential to become seizure free (Annegers 1979; Hauser and Annegers, 1993; Griffin 1991; Wallace et al, 1997; Taylor, 2000). The other 30% will continue to have seizures despite optimum care. National Statement of Good Practice for the Treatment and Care of People who have Epilepsy 2002 Joint Epilepsy Council 3