prepared as part of the joint epilepsy council good ... · prepared as part of the joint epilepsy...

Prepared as part of theJoint Epilepsy CouncilGood Practice Initiative

A Section 64 Funded Project.

Prepared as part of theJoint Epilepsy CouncilGood Practice Initiative

A Section 64 Funded Project.

National Statement of Good Practice

for the Treatment and Care of People who have Epilepsy

This publication has been produced as part of the Joint Epilepsy Council (JEC) GoodPractice Initiative, a Section 64 funded project. The Section 64 General Scheme(Section 64 of the Health Services and Public Health Act 1968) represents thegreatest single source of financial support that the Department of Health providesto the voluntary sector. The JEC Good Practice Initiative seeks to focus on theimplementation and/or barriers to implementation of good practice guidelines forepilepsy care in England.

Authors: Frost S, Crawford P, Mera S, Chappell B.

First published: March 2002

© 2002 Joint Epilepsy Council

Registered Charity No: 1061820

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 Councilc/o Mersey Region Epilepsy AssociationGlaxo Neurological CentreNorton StLiverpoolL3 8LR

This document is also available in pdf format on the JEC website:

www.jointepilepsycouncil.org.uk

The Joint Epilepsy Council of the UK and Ireland (JEC) is an umbrella body thatexists to enable 21 organisations to work together for the benefit of people withepilepsy.

Referencing

This National Statement should be cited as follows:

FROST S, CRAWFORD P, MERA S and CHAPPELL B (2002) National Statement ofGood Practice for the Treatment and Care of People who have Epilepsy. JointEpilepsy Council.

National Statement of Good Practice for the Treatment and Care of People who have Epilepsy • 2002 • Joint Epilepsy Council20

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 statisticallyif appropriate; includes studies using case control, longitudinal, cohort,matched pairs, or cross-sectional random sample methodologies, and well-designed qualitative studies; well-designed analytical studies includingsecondary analysis

C1 Descriptive and other research or evaluation not in B (e.g. conveniencesamples)

C2 Case studies and examples of good practice

D Summary review articles and discussions of relevant literature andconference proceedings not otherwise classified

Evidence from expert opinion:

P Professional opinion based on clinical evidence, or reports of committees

U User opinion from Service Users Reference Group or similar

C 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).

Contents1 Introduction .................................................................................... 3

2 Rationale ..........................................................................................32.1 BACKGROUND............................................................................ 32.2 THE EPILEPSIES AND COMMISSIONING................................ 3

3 Key Interventions .......................................................................... 43.1) IMMEDIATE CARE .................................................................... 5

3.1A Integrated epilepsy care .................................................. 53.1B Diagnosis ........................................................................ 53.1C Investigations .................................................................. 63.1D Non-epileptic seizures .................................................... 63.1E Communicating a diagnostic decision ........................ 63.1F Early follow-up .............................................................. 63.1G Starting treatment .......................................................... 63.1H Anti-epileptic drugs (AEDs) .......................................... 73.1I Potential social and psychological issues .................... 73.1J Information and education needs

of individuals and their family ...................................... 83.2) CONTINUING CARE ................................................................ 9

3.2A On-going Care ................................................................ 93.2B Specific areas of care ...................................................... 9

3.3) REMISSION .............................................................................. 113.3A Making a decision.......................................................... 113.3B Discussing the potential risks and implications.......... 113.3C Withdrawing therapies.................................................. 11

3.4) SPECIALIST SERVICE REQUIREMENTSAND THE ROLE OF GENERAL PRACTICE............................ 123.4A Specialist Epilepsy Services (within integrated care) .......... 123.4B The Role of General Practice (within integrated care) ...... 13

3.5) EDUCATION AND MONITORING........................................ 143.5A Relevant professional education.................................. 143.5B Monitoring epilepsy services........................................ 14

4 References ............................................................................ 15

5 Acknowledgements .......................................................... 18

Appendices............................................................................ 19EPILEPSY CARE PATHWAY...................................................... 19GRADES OF RECOMMENDATION - TYPOLOGY OF SUPPORTING EVIDENCE............................ 20

National Statement of Good Practice for the Treatment and Care of People who have Epilepsy • 2002 • Joint Epilepsy Council 1

National Statement of Good Practice for the Treatment and Care of People who have Epilepsy


“Much more could be done to improve health careand quality of life for people with epilepsy includingraising professional awareness, designing a properframework for care, ensudng that standards of localservices are higher and more consistent...”

(Annual Report of the Chief Medical Officer ofthe Department of Health, 2001)

This comment, made by Chief Medical Officer,Liam Donaldson, highlights the Department ofHealth’s recognition of the need for improvedhealth services for epilepsy.

This National Statement of Good Practicep r ovides a series of recommendations forattaining high quality National Health Servicetreatment and care for people with epilepsy inEngland.

The 1990s saw an increased interest in epilepsycare provision and numerous publications wereproduced. This National Statement of GoodPractice attempts to consolidate all theinformation and evidence from this previouswork in one concise document. All therecommendations made within this NationalStatement are based on data collected and views

expressed in previous work with people withepilepsy, their families and professionals workingin the field. By placing an emphasis on medical,social and psychological care, this NationalStatement reflects the fact that epilepsy has thepotential to affect individuals and their families inmany areas of their lives.

The National Service Framework for Long TermHealth Conditions is due to be implemented in2005, therefore this National Statement providesa timely opportunity to review the design anddelivery of epilepsy services. This should help toensure that the treatment and care received bypeople with epilepsy meets their individual needs.

I hope you find this National Statement avaluable and useful resource for improv i n ge p i l e p sy services and I warmly welcome itspublication.

Baroness Gould of PotternewtonChair, All Party Group on Epilepsy

Foreword

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 ofServices. April 1999b.

22. Epilepsy Task Force and JEC. Purchasing and Providing Epilepsy OutpatientServices: A Guide to Good Practice, July 1998.

23. Epilepsy Association of Scotland. ‘Epilepsy Checklist’, cited in Taylor 2000.

24. Epilepsy Advisory Board, Epilepsy Care: Making it Happen, British EpilepsyAssociation. 2000.

25. Epilepsy Working Group. Guidelines for Epilepsy. Second Edition. Doncaster1995.

26. First Seizure Trial Group (FIR.S.T. Group). Randomized clinical trial on theefficacy of antiepileptic drugs in reducing the risk of relapse after a firstunprovoked tonic-clonic seizure. Neurology 1993 Mar;43(3 Pt 1):478-483.

27. Griffin J. Epilepsy: Towards Tomorrow. London: Office of Health Economics.1991. Studies of Current Health Problems No. 99.

28. Hauser WA and Annegers JF. Incidence of Epilepsy and Unprovoked Seizures inRochester, Minnesota: 1935-1984. Epilepsia 1993. 34, 3, 453-468,

29. Heller AJ, Chestermann P, Elwes RD, Crawford P , Chadwick D, Johnson AL.Phenobarbitone, phenytoin, carbamazepine or sodium valproate for newlydiagnosed adult epilepsy: a randomised comparative monotherapy trial.Journal Neurology Neurosurgery and Psychiatry 1995; 58: 44-50.

30. Jacoby A, Baker GA, Steen N, Potts P, Chadwick DW. The clinical course ofepilepsy and its psychosocial correlates: findings from a U.K. Communitystudy. Epilepsia 1996 Feb;37(2):148-161

31. Jain P, Patterson V and Morrow J. What people with epilepsy want from ahospital clinic. Seizure, 1993, 2: 75-78.

32. King DW , Gallagher BB, Murvin AJ , Smith DB, Marcus DJ, Hartlage LC.Pseudoseizures: Diagnostic evaluation. Neurology 1982; 32: 18-23.

33. Mattson RH, Cramer JA, Collins JF, Smith DB, Delgado-Escueta AV, Browne TR.Comparison of carbamazepine, Phenobarbital, phenytoin and primidone inpartial and secondarily generalised tonic-clonic seizures. N Eng J Med 1985;313: 145-51.

34. Mattson RH, Cramer JA, Collins JF. A comparison of valproate withcarbamazepine for the treatment of complex partial seizures and secondarilygeneralised tonic clonic seizures in adults. N Eng J Med 1992; 327: 765-771.

35. Morgan C, Ahmed Z, and Kerr M. Social Deprevation and prevalance ofepilepsy and associated health useage. Journal of Neurology, Neurosurgery andPsychiatry 2000;69:13-17.

36. Nashef L, Fish DR, Sander JW, Shorvon S. – Incidence of sudden unexpecteddeath in an adult outpatient cohort with epilepsy at a tertiary referral centre.Journal of Neurology, Neurosurgery and Psychiatry. 1995; 58: 462 – 464.

37. Parker AP, Agathonikou A, Robinson RO, Panayiotopoulos CP. Inappropriateuse of carbamazepine and vigabatrin in typical absence seizures. Dev Med ChildNeurol 1998 Aug;40(8):517-519.

3.1) 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 psychologicalmanagement.

Standards

3.1A Integrated epilepsy care

a) All people experiencing seizures should have rapid access to diagnostic servicesand appropriate treatment (Brown et al, 1998; CSAG, 1999). GRADE P

b) Planned integrated care covering general practice and specialist epilepsy servicesis 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 dfor each person. This plan should address the clinical, social and psyc h o l o g i c a lneeds 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 daysof referral (Brown et al, 1993; Epilepsy Task Force 1998; Epilepsy AdvisoryBoard, 2000) to a specialist with an interest in epilepsy. GRADE P & U

b) Specialist services should be encouraged to organise first seizure clinics, whereinvestigations 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 pertinentinformation should be collected and extreme care taken before making adiagnosis. The medical history and eyewitness accounts are still the mostimportant pieces of information (SIGN, 1997; Taylor, 2000). GRADE B3

d) A level three diagnosis (e.g. a syndromic diagnosis) should be made whereverpossible. If not, level two should be attained (e.g. seizure type/s). A diagnosisof 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 physicianto make decisions quickly and safely, especially concerning the initial diagnosis.Investigatory delays that consequently delay clinical decisions are unacceptable.GRADE P & U


3.1

3.1


3.1D 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 nonepileptic seizures and, where appropriate, be able to contribute towards theirdiagnosis. 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 isinsufficient. 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 asmaking the initial decision itself. Individuals need to be informed fully about theirdiagnosis and its potential implications, (Cooper and Huitson, 1986; Risdale et al,1996; Wallace et al, 1997) therefore adequate time should always be allowed forreaction and questions. Privacy is essential. Where needed, access should beprovided to other sources of support (Risdale et al, 1996; SIGN, 1997; Wallace etal, 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 7days of diagnosis. All service users should be able to access relevant follow upwith a professional who has the required experience. GRADE P & U

b) This should provide both opportunity for the service user to ask questionsabout their concerns and for the professional to confirm the facts and issuesraised 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 wanttreatment. This matter should always be explored, as non-compliance withprescribed therapies is a major issue (Stanaway et al, 1985). How treatmentworks should always be explained. GRADE B3

c) Unlike other diagnoses, people with a certain diagnosis of unprovo k e dgeneralised tonic-clonic seizures should be offered treatment after the firstseizure, if the seizures are associated with previous myoclonic and/or absenceseizures (FIR. S.T. Group, 1993). GRADE A1

d) The decision to treat other seizure types may depend on the seizure frequencyand severity (SIGN, 1997). GRADE P

e) Seizures arising from alcohol withdrawal and other metabolic or drug-relatedcauses 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 betreated but drug withdrawal should be subsequently considered (SIGN, 1997).GRADE P


4 References

1. Annegers JF, Hauser WA, Elveback LR. Remission of Seizures and Relapse inPatients with Epilepsy. Epilpesia, 20, 729-737, 1979.

2. Anti Epileptic Drug Withdrawal Study Group. Randomised study ofantiepilepetic drug withdrawal in patients in remission. Lancet, 1991 May 18,Vol. 337, Issues 8751, p1175.

3. Anti Epileptic Drug Withdrawal Study Group. Prognostic index for recurrenceof seizures after remission of epilepsy. British Medical Journal, 1993 May 22,Vol. 306, p1374-8.

4. Austin JK, Huberty TJ, Huster GA, Dunn DW. Academic achievement in childrenwith epilepsy or asthma. Dev Med Child Neuro l 1998 Apr;40(4):248-255.

5. Berg A, Shinnar S and Chadwick D. Discontinuing Antiepileptic Drugs. Chp115 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). 1995.

7. Boden S, Betts T, and Clouston T Use of olfactory stimuli (aromatherapy) tosuccessfully control epileptic seizures. Acta Neurologica Scandinavica. 1990.volume 82 (Suppl 133) page 54.

8. Boyle DIR, Morris AD and McDonald TM. A record linkage capture-recapturetechnique to create a diabtes disease register for epidemiological research.1998. http://www.dundee.ac.uk/memo/dougie.htm

9. British Epilepsy Association (BEA). An Agenda for Action. 2000.

10. British Medical Association and the Royal Pharmaceutical Society of GreatBritain. British National Formulary. 2001. London.

11. Brodie MJ, Richens A, Yuen AW. Double-blind comparison of lamotrigine andcarbamazepine in newly diagnosed epilepsy. UK Lamotrigine/CarbamazepineMonotherapy Trial Group. Lancet 1995 Feb 25;345(8948):476-479.

12. Brown S, Betts T, Chadwick D, Hall B, Shorvon S, Wallace S. – An EpilepsyNeeds Document. Seizure 1993; 2: 91 – 103.

13. B r own S, Betts T, Crawford P, Hall B, Shorvon S, Wallace S. – Epilepsy Needsrevisited: a revised epilepsy needs document for the UK. S e i z u re 1998; 7: 435 – 446.

14. B r own SW, Lee P, Buchan S, Jenkins A. A 2 year follow-up of NHS Executive Letter9 5 / 1 20: where is the commitment to quality? S e i z u re 1999 Apr;8(2):128-131

15. Clinical Standards Advisory Group (CSAG). Services for patients with epilepsy.1999.

16. Cockerell OC, Hart YM, Sander JWAS, Shorvon SD. The cost of epilepsy in theUnited Kingdom: an estimation based on the results of two population basedsurveys. Epilepsy Research, 1994a;18:249-60.

17. Cockerell OC, Johnson A, Hart YM, Goodridge DM, Sander JWAS, ShorvonSD. Mortality from epilepsy: results from a prospective population-basedstudy. Lancet 1994b. 344: 918-21.

18. Collings JA. International differences in psychosocial well-being: a comparativestudy of adults with epilepsy in three countries. Seizure 1994 Sep;3(3):183-190.

19. Cooper GL, Huitson A. An Audit of the management of patients with epilepsyin thirty general practices. J R College of General Practitioners. 1986;36:204-08.

Epilepsy Antiepileptic drug Seizure Lifestyleinformation (AED) information Triggers Implications

Aetiology AED Regime Lack of sleep Driving

Classification Side effects Alcohol withdrawal WorkEpidemiology Compliance Stress EducationPrognosis Missed Doses Illness Leisure

Inheritance Free prescriptions Reflex stimuli SafetySUDEP* Drug Interactions ContraceptionSeizure diary Withdrawal Pre-conception*Sudden unexplained Death Parentingin Epilepsy

Psychological First Aid Voluntaryimplications Organisations

Felt and enacted stigma Complex partial seizures Contact details and Stress Tonic-clonic seizures information about servicesMood changes Status epilepticus provided by voluntary Family relationships organisations is availableOther relationships from the Anxiety Joint Epilepsy Council, Depression c/o Mersey Region

Epilepsy Association, Glaxo Neurological Centre,Norton StreetLiverpool L3 8LR.

(Adopted from SIGN, 1997; Epilepsy Association of Scotland ‘EpilepsyChecklist’; 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).

3.1


3.4B The Role of General Practice (within integrated care)

General practice has a vital role in the management of epilepsy, especially in theco-ordination of care with particular emphasis on social, psychological andemotional support.

General practice should provide:

a) A comprehensive standard protocol for referral that helps to secure an accuratediagnosis.

b) Access to the best available specialist epilepsy service within reasonabletravelling distance.

c) Support pre and post the diagnosis of epilepsy.

d) Guidance about accessing information by using resources such as specialistnurses, local and national voluntary organisations.

e) Prescription and adjustment of AEDs should be recorded in the individualsPatient 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

3.4


The prevalence of active epilepsy is 5-10 per 1,000 persons.(Sander and Shorvon, 1996; CSAG, 1997; Brown et al, 1993)

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 similartime 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 ofAEDs, but there is data to suggest (Betts, 1995) that used in combinationwith AEDs (complementary) they may benefit some people (Taylor, 2000).This is especially so in those with associated anxiety and depression (Bodenet al, 1990). GRADE D

e) Social and psychological care

Professionals should avoid concentrating on clinical issues if the individual’sagenda is different. It is likely that social and psychological issues will be highon the individual’s agenda at differing times (CSAG, 1999; BEA, 2000). GRADEC1. Individuals should be referred to appropriate information and supportservices (Epilepsy Advisory Board, 2000; Wallace et al, 1997). GRADE B3

f) Information needs

Continuing information and education needs of individuals and their familymay vary dependent on the clinical, social and psychological outcome of earlycare. 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)

3.3


3.3) Remission

Aim

• To increase the number of people who successfully withdrawfrom therapy.

Standards

3.3A Making a decision

Withdrawal of medication is possible under certain circumstances as it has beenshown that twenty years from diagnosis approximately 50% of people will beseizure free and off medication (Annegers and Hauser, 1979). Deciding whenremission actually occurs is difficult but it is sensible to discuss withdrawal aftertwo years seizure free (AED Withdrawal Study Group, 1991 - GRADE B1; Taylor,2000). A decision to start withdrawal of therapy should consider all relevant factorsand 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 informedthrough 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 barbituratesand benzodiazepines (Berg et al, 1997). GRADE A2


3.4) 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 aconsultant with a specialist interest and experience in epilepsy from a relevantspeciality (Epilepsy Task Fo r c e, 1998; CSAG, 1999; Epilepsy Advisory Board,20 0 0 ) . GRADE P & U

NB: ‘A particular interest in epilepsy’ requires substantial experience in thetreatment and care of a wide range of people with epilepsy plus a commitmentto 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, vagalnerve 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

3.4


3.2) 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 servicesshould 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 otherdifferential 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 pertinentinvestigations. These may be new investigations or repeats of previous in anattempt to find new information concerning causation, syndrome or any otherrelevant reason. GRADE P

c) AEDs

Where the first choice or choices of AEDs have been unsuccessful the specialistteam should carefully consider other alternative monotherapy or reasonedpolytherapy (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 significantgroup of people who do not respond satisfactorily to AEDs who will benefitfrom 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 neurosurgicaltreatment after suitable work up. Neurosurgery should be considered inALL client groups after two years of unsuccessful AED treatment (SIGN,1997; Taylor, 2000; Wallace, 1997; CSAG, 1999). GRADE P

3.2


3.5) 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 ongoingprofessional education in epilepsy. A recognised qualification in epilepsy andmembership of an appropriate professional body is desirable. e.g. InternationalLeague 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 forlocal adaptation are contained within the document, “Adults with Poorly ControlledEpilepsy” 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”.

3.5

3.1


3.1H Anti-epileptic drugs (AEDs)

AEDs are the first line treatment for epilepsy. There is now additional choice in therange of AEDs. Principally the choice of AED should be based on the mostappropriate for the person’s seizure type/s and syndrome, their age and sex (Taylor,2000). Associated consideration should be given to potential adverse effects. Thereis 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 expensiveAED this should not be denied due to budgetary constraints. Although there is noevidence to suggest that one AED is generally more efficacious that any other, thereis evidence (Heller et al, 1995; Richens et al, 1994; Turnbull et al, 1985; Mattsonet al, 1985; Mattson et al, 1992) that some are more efficacious for certain seizuretypes 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 tohow people can safely partake or participate in the normal range of socialactivities. GRADE C1

Common psychological issues

Epilepsy has psychological implications for some people (CSAG, 1999; Jacobyet al, 1996). This should be at the forefront of the service provider’s agenda. Apositive 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 otherrelationships. 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 interms 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 arefully explored, if and when relevant:

There is a risk of increased morbidity (Sillanpaa, 1992; Griffin, 1991) (i.e. shortand long term consequences of seizures and/or treatment and the effects of socialdepravation and increased mortality (Nashef et al, 1995) (twice that of the generalpopulation) (Cockerell et al, 1994b; CSAG 1999). The person with epilepsy is alsomore prone to accidents and concurrent illness (Epilepsy Task Force, 1999a) andeducational under achievement (Austin et al, 1998).

Service provision for epilepsy is fragmented throughout England (Epilepsy TaskForce, 1999b, CSAG 1999). There is also to date a lack of commitment to thecommissioning of specific epilepsy services (Brown et al, 1999). Previous authors(e.g. Brown et al, 1998) have suggested that specific services for epilepsy should beavailable for all people.

3 Key InterventionsThis Statement sets out 5 main components for the development of integratedepilepsy 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. References


38. Richens A, Davidson DL, Cartlidge NE, Easter DJ. A multi-centre comparativetrial of sodium valproate and carbamazepine in adult onset epilepsy. J Neurology Neurosurgery Psychiatry. 1994;57:682-7.

39. Risdale L, Jeffery S, Robins D, McGee L, Fitzgerald A. Epilepsy Care EvaluationGroup. Epilepsy monitoring and advice recorded: general practitioners views,current practice and patients preferences. British Journal of General Practice1996;46:11-4.

40. Sander JWAS and Shorvon SD. Epidemiology of the epilepsies. Journal ofNeurology, Neurosurgery and Psychiatry 1996;61:433-443.

41. Scambler A, Scambler G, Risdale L, Robins D. Towards an evaluation of theeffectiveness of an epilepsy nurse in primary care. Seizure 1996;5:255-8.

42. Schachter S and Saper C. Progress in Epilepsy Research - Vagus NerveStimulation. Epilepsia, Volume 39, Supplement 7, p.677-686, 1998.

43. Scheepers B, Clough P, Pickles C. The misdiagnosis of epilepsy: findings of apopulation study. Seizure 1998 Oct;7(5):403-406.

44. Scottish Intercollegiate Guidelines Network (SIGN), Diagnosis and Managementof Epilepsy in Adults: A National Clinical Guideline recommended for use inScotland, Pilot Edition,1997.

45. Sillanpaa M. Epilepsy in children: preva l e n c e, disability, and handicap. 1: Epilepsia 1992 May;33(3):444-449

46. Stanaway L, Lambie DG, Johnson RH. Non compliance with anti-convulsanttherapy as a cause of seizures. NZ Medical Journal 1985;98:150-2.

47. Taylor MP. Managing Epilepsy: A Clinical Handbook, Oxford, Blackwell Science,2000.

48. Turnbull DM, Howel D, Rawlins MD, Chadwick DW. Which drug for the adultepileptic patient: phenytoin or valproate? British Medical Journal 1985, 290:815- 819.

49. Wallace H, Shorvon SD, Hopkins A, O’Donoghue M. Adults with poorlycontrolled epilepsy. London, Royal College of Physicians, 1997.

50. Wallace H, Shorvon S, Tallis R. Age-specific incidence and prevalence rates oftreated epilepsy in an unselected population of 2,052,922 and age-specificfertility rates of women with epilepsy. L a n c e t 1998 Dec 19;352(91 4 5 ) : 1 9 70 - 1 9 7 3 .

51. Wieser HG. Epilepsy Surgery: past, present and future. S e i z u re 1998; 7: 173-184.

5. Acknowledgements


5. Acknowledgements

Research Team: Steering Group Members:Sarah Frost Professor Stephen Brown ChairBrian Chappell Sue ThomasProfessor Pamela Crawford Pat NoonsDr Stephen Mera Dr David McCormick

Jim OatesMike HarnorDr Ley SanderDr Keith RedheadPeter Rogan JECJulie TickleHilary Mountfield

The Research Team would like to thank the members of the Steering Group fortheir valuable input throughout the course of the project.

Thanks must also go to the Joint Epilepsy Council for initiating and organising theproject and to the Department of Health for providing funding through the Section64 scheme.

Last but not least, thanks to Mike Moran, Dr Henry Smithson and Dr MalcolmTaylor who provided advice on the structure and content of the National Statement.


National Statement of Good Practice for the Treatment and Care of

People who have Epilepsy

1 Introduction1.1 Aims and scope of the National Statement

The aim of this National Statement is to provide a series of recommendations forattaining high quality National Health Service care for people with epilepsy inEngland.

The statement is principally aimed at facilitating commissioning and will thereforebe of use to purchasers, providers and service users.

Epilepsy has the potential to affect individuals and their families in many areas oftheir 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 Rationale2.1 Background

The 1990s saw an increasing interest in the epilepsies and care provision. Therewere numerous publications (Service Development Kit, Epilepsy Care: Making itHappen, Adults with Poorly Controlled Epilepsy, CSAG Report, SIGN Guidelines)and this National Statement attempts to take all the information from thisprevious work and consolidate the evidence in one brief document. All therecommendations made here are based on the data collected and views expressedin this previous work with people with epilepsy, their families and professionalsworking in the field.

In preparing this National Statement, the Clinical Standards Advisory GroupReport (CSAG) and Scottish Intercollegiate Guidelines Network (SIGN)documents were initially consulted, both of which had a thorough literature searchstrategy of their own. Further MEDLINE searches were carried out and standardtextbooks and other important reports (e.g. Epilepsy Task Force Survey) were alsoconsulted.

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). Itsestimated incidence is around 50 - 80 per 100,000 persons per annum (Wallace etal, 1998, Hauser and Annegers, 1993; Brown et al, 1998). This means that in theaverage Primary Care Trust of 250,000 people between 125 - 200 will developepilepsy per annum. The incidence is greater in children and older people (Hauserand Annegers, 1993, Brown et al, 1998). The prevalence of active epilepsy is 5-10per 1,000 persons (Sander and Shorvon, 1996; CSAG 1999; Brown et al, 1993). Itis 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). Theother 30% will continue to have seizures despite optimum care.

Epilepsy is the most common of theserious neurological conditions

(Brown et al, 1998)

prepared as part of the joint epilepsy council good ... · prepared as part of the joint epilepsy...

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