national centre for trigeminal neuralgia - migraine trust · national centre for trigeminal...
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National Centre for Trigeminal
Neuralgia
Prof Joanna Zakrzewska
Eastman Dental Hospital
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2nd TNA conference
Florida 1998
We are the lost
tooth brigade
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Incidence
per 100, 000
Hall et al
2006 UK
Dieleman
2008
Koopman et
al 2009
Number 8,268
322 118
Incidence
26.8
28.9
12.6
Misdiagnosis of TN
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Classifications criteria for TN
2013
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Mrs B 50 years old
Classical TN
GP diagnosed -
Steroid injection
6 months
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Systematic reviews
Updated 2014
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Microvascular
decompression
MS
Drug
therapy
Neurovascular compression
Drug therapy
Tumours etc
Idiopathic TN
MRI
Blood tests Symptomatic TN
Ablative procedures Gasserian
ganglion
Gamma knife
Trigeminal neuralgia Primary care
Carbamazepine
Initial good control but now failing
Refer pain clinic
Neurology headache
Neurosurgery Poor
quality of
life
Carbamazepine
Oxcarbazepine
Lamotrigine
Baclofen
Pregablin
Gabapetin
Joint neurosurgery
clinic Psychology
CNS
© Zakrzewska
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New drug for TN
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161 patients
82 not eligible
F:53 M:29
Mean age 67; 61 exc >80
79 eligible
F:49 M:30
Mean age: 60
54 too little pain 17 did not
want to change
2 past poor experience
2 severe pain surgery
2 moderate no time
1 moderate on 2 drugs
1 enrolled
failed screen
Screening London Cohort
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National Centre for TN
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Aims of National Centre
Patients : improve diagnosis and
management plans across the UK
Establish patient centred care and
outcomes
Improve skills of healthcare professionals
Identify centres of excellence across the
UK
Run research programs nationally and
internationally
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Spotlight : Patient Centred Care
BMJ roundtable debate: How can we get
better at providing patient centred care?
BMJ 2015; 350 doi: http://dx.doi.org/10.1136/bmj.h412
BMJ 2015;350:h412
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Actions
Measure and incentivise person centred care,
as defined by patients
Trusts/ clinical commissioning groups
accountable for maintaining integrated
systems, easy for patients to navigate
All patients with long term conditions to have
and define their own care plans
Open medical records to patients, share it
across providers
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Actions 2
Royal colleges to appoint clinical champions
for person centred care
Appoint patient officers on all trust boards
Use new technologies to engage with patient
communities and promote self care
Include person centred care standards in
education and clinical leadership
Care Quality Commission inspections to
prioritise the provision of person centred care
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Design healthcare services
Patients and staff as codesigners of healthcare services
BMJ 2015; 350 doi: http://dx.doi.org/10.1136/bmj.g7714 : BMJ 2015;350:g7714
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Improve service TN
Diagnosis as early as possible
Empower patients with knowledge and
skills
Determine appropriate management
Train clinical nurse specialists
Increase psychosocial support
Identify centres of excellence across UK
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Choice, Option, Decision
http://www.advancingqualityalliance.nhs.uk/SDM
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What is being shared ?
Clinician
• Diagnosis
• Aetiology
• Prognosis
• Treatment options
• Outcome probabilities
Patient
• Experience of
illness
• Social
circumstances
• Attitude to risk
• Values
• Preferences
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Seeing things from the patients’ view:
what will it take?
Change in medical curriculums
Listening to and discussing patient stories
Financial incentives that reward health staff
for providing more patient centred care may
help
There are no magic bullets
Nigel Hawkes journalist, London, UK
doi: http://dx.doi.org/10.1136/bmj.g7757
BMJ 2015;350:g7757
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National Centre for TN ?
Dream?
Achievable goal?
Should we begin building?
Nothing ventured nothing gained!