national centre for trigeminal neuralgia - migraine trust · national centre for trigeminal...

National Centre for Trigeminal

Neuralgia

Prof Joanna Zakrzewska

Eastman Dental Hospital

2nd TNA conference

Florida 1998

We are the lost

tooth brigade

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

Classifications criteria for TN

2013

Mrs B 50 years old

Classical TN

GP diagnosed -

Steroid injection

6 months

Systematic reviews

Updated 2014

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

New drug for TN

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

National Centre for TN

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

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

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

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

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

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

Choice, Option, Decision

http://www.advancingqualityalliance.nhs.uk/SDM

What is being shared ?

Clinician

• Diagnosis

• Aetiology

• Prognosis

• Treatment options

• Outcome probabilities

Patient

• Experience of

illness

• Social

circumstances

• Attitude to risk

• Values

• Preferences

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

National Centre for TN ?

Dream?

Achievable goal?

Should we begin building?

Nothing ventured nothing gained!