Epilepsy The Patients Journey A Neurologists Perspective

1
Epilepsy The Patients JourneyA Neurologists
Perspective

• Peter Goulding
• Consultant Neurologist
• Leeds General Infirmary

2
First Attack Is it Epilepsy

• Convulsive syncope
• Cardiac disorder
• Migraine
• Sleep disorder
• Psychiatric disorder Panic attack Dissoci
  ation
• Epileptic seizure Benign aetiology Sinis
  ter problem tumour, vascular lesion

3
First Attack - Evaluation

• Accident Dept Junior staff
• Primary care GP (with SI) or Nurse (with SI)
• Secondary care specialist referral
• Seizure clinic (hospital) Consultant (with SI),
  Other Doctor, Epilepsy Specialist Nurse
• Clinical assessment (EEG, imaging, ECG)
• Single follow up appointment
• Most discharged to GP with care plan
• Primary care follow up GP or nurse with SI
• Specialist/GP follow up if difficult epilepsy

4
Clinic for Difficult Epilepsy (Hospital)

• Staff Consultant with special
  interest Epilepsy Nurse Specialist Neurologica
  l Trainees GP with special interest Non-co
  nsultant grade doctors
• Review diagnosis - wrong in 20
• Trials of new AEDs
• Special clinics for young women, teenagers,
  elderly, learning disabled etc
• Refer for consideration of surgical treatment
• Education and support

5
Tertiary Epilepsy Surgery Service (Neuroscience
Centre)

• Members of team Physician with special
  interest Epilepsy specialist nurse Neuropsych
  ologist Neuroradiologist Neurophysiologist
  Neurosurgeon
• 10 - 30 of patients suitable
• 30 - 70 chance of seizure freedom with resective
  surgery
• Vagal nerve stimulator 50 reduction in half

6
NICE Guidelines Oct 2004

• First attack - see specialist within 2 weeks
• EEG if indicated with 4 weeks
• MRI if indicated with 4 weeks
• ECG in all adult patients
• Specialist Nurse key part of network
• Agreed comprehensive care plan
• Follow up by specialist or generalist where
  appropriate at least yearly
• Tertiary service if seizures not controlled by
  2yrs

7
NSF For Long Term Conditions March 2005

• Early recognition in primary care
• Referred to specialist services quickly
• Care pathway in accordance with locally agreed
  protocols
• i.e. NICE guidelines

8
Current Status of Epilepsy CareEpilepsy Action
(Nov 2004)

• Wait for specialist assessment 8 10 weeks
• Wait for EEG 5 weeks
• Wait for MRI brain 24 weeks
• Misdiagnosis rate in UK 20-31
• Only 26 PCTs likely to include epilepsy in local
  delivery plan for 2005-2008. Only 19 in 2004
• Leeds audit in progress

9
First Seizure Referrals

• 150 300 per 100,000 adults per year
• Leeds adult population 500,000
• Between 750 and 1500 referrals per year
• 30 minutes per patient
• 8 patients per 4 hour clinic
• Between 94 and 188 clinics per year
• Each consultant 1 first seizure clinic a week. 42
  weeks per year
• 2.5 and 5 consultants with interest in epilepsy
  if only dealt with first seizures Joint
  Epilepsy Council, 2002

10
Job Plan Neurologist with Special Interest in
Epilepsy (10 PA)

• 3 or 4 clinics First seizure clinic/new
  referrals Difficult epilepsy clinic plus review
  1st seizure Special interest clinic (surgery,
  teenagers) General neurology clinic
• 2 ward rounds
• 2 sessions admin
• Academic half day
• Audit, appraisal, teaching, research, committee
  work etc
• 42 weeks per year

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Problems with Current System (1)

• Lack of medical resources UK 1 neurologist
  per 180,000, few epilepsy SI Europe, North
  America 1 per 20 30,000 Few specialist nurses,
  grade under threat
• Lack of appropriate technology MRI, EEG,
  Video EEG
• Clerical chaos Difficulty recruiting
  suitable clerical staff to NHS Many neurologists
  have no secretary Clinics in more than one
  hospital (GP surgery) LTHT largest hospital
  trust in UK Notes commonly lost Investigati
  ons commonly missing

12
Problems with Current System (2)

• Recent government reforms Centralised
  generic booking system Named referrals
  discouraged PCT patients must be seen within
  14/52 20 patients seen by non-NHS
  providers Investigations (MRI) via non-NHS
  providers
• Consequences Clinic slots not utilised
  Patients in 1st available clinic, some need
  re-referral Consultant (A E) referrals bottom
  of pile 14 week waiters often priority over
  urgents Long wait first seizure
  patients/hospital referral Poor availability of
  notes and scans for review

13
Possible Solutions

• Primary care Adequate sized
  practices GP or practice nurse with SI
  epilepsy Seizure free patients, refer if
  relapse Training, appraisal, audit, CPD,
  etc. Access to MRI uncertain
• Secondary care Difficult within current
  system without huge extra funding
• Dedicated neurology hospital NHS or
  Non-NHS Recruit or release staff
  Ownership of booking, admin etc Dedicated
  neurology notes Funding