Epilepsy Quality and Care Programme
National Clinical Lead: Colin Doherty
Programme Manager: Sharon Marrow
sharonmorow@rcpi.ie
.Epilepsy is the most common serious neurological disorder
of young people and affects an estimated 50 million people
worldwide. Societal costs are considerable as individuals
with medically intractable seizures make up a third of the
epilepsy population.
The development of an Epilepsy EPR has been focused
on improving processes and refocusing resources and
allows clinicians to access patient’s information instantly
whether they are seeing the patient in the regional
epilepsy centre or at an outreach clinic or providing
telephone advice.
To achieve its QAC aims the focus will be on keeping
patients who experience a first seizure out of hospital
and to establish rapid access seizure clinics led from
each regional epilepsy centre.
Reducing bed days will realise very significant cost
savings ( need sentence or two here from Sharon)
The programme aims to provide timely access, intelligent
support and outreach clinics for primary care practitioners
in the community which will demonstrate true value by
reducing admission to the acute hospitals and reducing the
length of stay in those admitted.
Epilepsy Programme Cost – Benefit Analysis (High Level)
The programme will be facilitated by the use of centrally
managed electronic patient record (EPR) that can be
accessed by programme staff across a web interface.
€2,317,209
Pay Costs
Non-pay costs
21,900
Projected no. of bed days
saved
€821,196
Cost per bed day
€200
€3,138,405
Total bed savings
€4,380,000
Main goals (QAC)
Quality:
Total Cost
To reduce Mortality and Morbidity from Sudden
Unexpected death from Epilepsy (SUDEP), Status
Epilepticus (SE) and injuries. (100-150 per year; reduce
by 1/3)
To increase the prevalence of patients who are seizure
free (2000)
To reduce no. of hospital admissions, save bed days,
reduce readmission rates. (Reduce ALOS by 3 days in
each hospital).
Access:
The kernal of the epilepsy programme is to create a
cohort of advanced nurse practitioners (ANP) to
compliment current medical and nursing expertise.
Mortality and Morbidity
Patients with epilepsy have an increase in mortality
compared to the general population.
New nurses will be recruited at staff nurse level with the
explicit aim of becoming ANPs. A post graduate
qualification in advanced practice with epilepsy nursing
will be developed with 3rd level colleges.
Patients recently diagnosed (due to underlying diagnosis)
or those with refractory epilepsy, who do not achieve
seizure freedom are more likely to die from epilepsy
SUDEP or status epilepticus.
Using a detailed and specific competency framework will
allow new staff nurses to move towards ANPs over a
defined period of time.
To eliminate the waiting lists for epilepsy care.
To provide 24/7 access to specialist opinion.
To ensure all epilepsy patients have timely access to a
structured primary care programme.
To reduce wait time for epilepsy surgery.
Expert opinion would indicate the importance of access
to a specialist multidisciplinary service for assessment
and treatment of patients with chronic epilepsy to
improve the management of their epilepsy and to
maximize their chances of entering remission.
A personal development plan along with the competency
framework, which is supported with mentorship,
benchmarking and extensive clinical experience enables
the novice epilepsy nurse over time to practice at an
advanced level.
Cost:
To investigate opportunities to make drug cost related
savings.
To reduce average length of stay (60 beds nationally).
To reduce unnecessary investigation and treatment
Clinical
Management
Annual
Review
Clinics
EPR
Networks
and
Videolinks
.
Rapid
Access
Seizure
Clinic
Specific
Patient
Population
clinics
Figures from Irish Studies
Epilepsy
Estimated Rate of
Prevalence no of
SUDEP
estimates1 people with cases/ yr
2
epilepsy 3
Estimated
no
SUDEP
cases/yr 3
2006 crude
death rate
(directly
related
epilepsy)
Estimated
no of
deaths
per year 3
8.3/1000 34,171
≥ 5 years PWE
21-44
cases
1.9/1000
PWE
65
15-41
cases
1.8/1000
PWE
67
0.61.3/100
0 PWE
0.41.1/100
0 PWE
9.0/1000 37,052
≥ 5 years PWE
ID Satellite
Clinics
Phone &
email
support
1
From Linehan et al 2010
2 Based on work by Langan et al 1998
3 Based on 2010 population estimates
from www.cso.ie
One of the ten Competencies identified for ANPs (Clinical Management)
outlining types of clinics proposed.
Fig 1 HSEAdministrative Map
Regional Epilepsy Care Centres
1North East
aNational adult and Surgical
Centre
bNational Paediatric Centre
2Dublin Mid Leinster
aAdult
3HSE South
aAdult
bPaediatric
4HSE West
a½ adult (Galway)
b½ Adult (Sligo)
Various pathways have been developed to guide clinicians through the referral process from when patients initially present in the ED to
when patients with a diagnosis of epilepsy contact the epilepsy nurse phone line for help.
The current complement of Epilepsy Monitoring Units (EMU) beds will be increased with a 2 bedded unit in Cork University Hospital
and a 4 bedded unit in Beaumont Hospital. Staff Nurses in the EMU will provide 24 hour advice on seizure management and referral to
the rapid access seizure clinics in the regional epilepsy centres.