Headache Pathway

Case for Change

November 2017

Table of Contents

Executive summary ...................................................... 3 1

Background ................................................................... 4 2

Introduction ................................................................... 5 3

Epidemiology of headache .......................................... 5 4

National strategic context and drivers for change .... 6 5

Local Strategic Context ............................................... 7 6

The vision for Headache management ..................... 12 7

Improvement in primary care recognition of primary 7.1headaches including migraine and medication overuse headache ................................................................................ 12 Specialist triage of referrals .................................................. 13 7.2 Development of a community headache clinic .................... 16 7.3 Cost savings ........................................................................... 16 7.4 Cost of the new service in your area .................................... 18 7.5

Summary ..................................................................... 19 8

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Executive summary 1

There are significant opportunities for the patient, the NHS, and the economy through

the improvement of the management of headache. England has one of the lowest

ratios of neurologists per population and case numbers are rising so it is imperative

that their time is used for the maximum value to the patient.

This Case for Change alongside a short summary document and a presentation

forms part of a pack for commissioners which provides detailed information to help

consideration of the development of a community headache pathway. This Case for

Change has been developed by assessing the current situation in Oxfordshire but the

methodology for consideration can be replicated in any area and the document

includes links to specific CCG data sets which are useful when a CCG develops their

own case. Oxfordshire CCG have undertaken a pilot and subsequent audit of the

proposed pathway and have plans to move to the new service in early 2018.

Current management of primary headache disorders and the challenges that are

being faced are described along with future projections and detail of the local and

national drivers for change.

This document outlines a number of opportunities for improvement in the way that

headaches can be managed in order to deliver the benefits listed below:

Improved patient experiences and health outcomes

Care provided more appropriately

Reduced health system costs and pressures on the acute sector

Care closer to home improving patient experience and reducing inequality

Improved access times to health services

Better, more efficient use of the limited resources of the NHS

Reduced costs to the NHS through inappropriate or delayed care

Reduced burden of disability and social care costs

Reduced variation

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Background 2

The following key points highlight why focus on the headache pathway is important.

Headache accounts for 33% of all new referrals to neurology although the majority of cases can be treated in primary care. It is the most common neurological reason for A&E attendance, and A&E admissions for headache have continued to increase steadily.i

In the year 2013/14 there were 17.4m A and E attendances in England for headache, resulting in 17105 emergency admissions, 14123 were for migraine

It is estimated that 4% of primary care consultations are related to headaches

Improved community care for neurological conditions can improve care co-ordination for the individual, optimise self-management and focus specific resources on those with the greatest need

Data on hospital activity related to headache shows a steady increase in activity between 2012 – 2016

The system is overstretched and the increase in neurology referrals is causing pressure on outpatient clinics and patient delays.

Numbers of neurologists are at critical levels in many parts of England leading to delays in provision of care so use of other skilled clinicians such as GPs with special interest or nurse specialists is key

Most of the health and social burden of headaches is caused by primary headache disorders and medication overuse headache.

The traditional model is process driven and not patient-centred

Local analysis in Oxfordshire shows 66% of primary headache and medication overuse headaches referred to neurology outpatients could be successfully managed in the community

Across England the total hospital admissions and costs for headache have increased over the past four years.

The shift in services from the acute to the community/primary sector is expected to be a key enabler in delivering around £4.3bn of a total £22bn efficiency savings by 2020

National direction offers an opportunity and a requirement to reform and considerably improve community care of long-term neurological conditions

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Introduction 3

Through review of current healthcare usage in Oxfordshire, this case for change

highlights that a significant part of the activity and financial pressure on the

neurology pathway is caused by primary headache and medication overuse

headache. It shows a clear argument for treating these types of headache in the

community where clinically appropriate.

This aligns with the national policy direction around developing more integrated

approaches to care delivery, improving quality and efficiency of services and moving

care closer to people’s homes from acute hospitals to community services.

The Transforming Community Neurology project report produced by the SCN in June

2016 aimed to encourage the adoption of community-based care models in order to

improve person-centred coordinated care and improve the quality of life for people

with long-term neurological conditions. This case for change focuses on a

community-based proposed solution for the specific management of

headache.

Epidemiology of headache 4

Headaches are one of the most common neurological problems presented to GPs

and neurologists. They can be painful and debilitating, an important cause of

absence from work or school, and a substantial burden on society.

Headache is a painful and disabling feature of the primary headache disorders including migraine, tension-type, and cluster headache. Headache may be a presenting symptom for many disease processes and is then termed as secondary headache.

Headache affects 90% of the population at some time. They are among the most common disorders of the nervous system and can be the cause of significant and long-term disability. 4% of adults consult a GP each year for headache or migraine.ii(Latinovic et al. 2006)

Whilst tension-type headache is the most common primary headache disorder (experienced by 70% of the population), the most frequent headache seen in general practice is migraine.

Migraine is classed by the World Health Organisation as one of the top 20 leading causes of disability amongst adults. 80% of migraine sufferers have disabling attacks that interfere with life at work, home, and socialisation.iii There are approximately 6,720,000 people living with migraine in England.

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Migraine is more prevalent than diabetes, epilepsy and asthma combined.iv (The Migraine Trust)

Patients with frequent headaches may overuse acute treatments such as codeine, paracetamol, ibuprofen or triptans. With medication overuse, the headaches can become chronic and intractable increasing the disability arising from the headache.

There are many serious conditions that will present with headaches. Many patients may visit their GP or A&E because they are worried about an underlying sinister cause for their headaches. However most patients with headaches will have a primary headache disorder.

97% of headache is managed in primary care (Latinovic et al: 2005) and it is therefore essential to ensure that the correct management is initiated by GPs to avoid ongoing disability, medication overuse, and inappropriate emergency attendance and repeat GP attendance.

The majority of patients who are referred to secondary care for headaches are seen once by a general neurology consultant; in many cases, this referral is to exclude secondary causes such as tumours.

The direct cost to the NHS for headache is estimated at £1 billion per year (Ridsdale 2007), with GP consults and medications of £468 per patient per year. Costs may be substantially higher than estimated as headache patients have frequent co-morbidities. For example, depression is three times more common in patients with migraine than healthy people. The cost of headache to the economy in terms of lost productivity was estimated at £5 billion.

Across Thames Valley the total hospital admissions and costs for headache have increased over the past four years. In 2012/13 total costs for those with a primary diagnosis of headache across the SCN area were £2,016,691 and for those with a secondary diagnosis were £5,008.805. The total cost burden to the Thames Valley SCN area was just over £7 million.

National strategic context and drivers for change 5

This project supports the vision set out in NHS England’s The Five Year Forward

View (2014) to explore the potential of new models of care to deliver locally-provided,

integrated care, organised around the patient. It offers an opportunity and a

requirement to reform and considerably improve community care of long-term

neurological conditions. Alongside improved patient experience and outcomes, it has

the ambition to achieve 2% net efficiency gains each year for the rest of the decade.

Arlene Wilkie, chief executive of the Neurological Alliance, said: “Good community care services are crucial to people living with neurological conditions. They can

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support improved wellbeing and better health outcomes for patients, help people to self-manage their conditions more effectively and maintain good mental health. There is great potential for better community care to reduce pressure on hospitals by helping people maintain their good health and independence for longer.”

The All Party Parliamentary Headache in England report noted in 2014 that

‘The biggest opportunities to address the burden of headache exist within primary

care, since this is where the majority of cases present to. Despite the NICE

headache guideline and quality standards, the provision of good quality headache

care and patient satisfaction within primary care is poor. Strengthening resources to

improve the provision of care at primary care level will therefore yield good value for

money for commissioners. Initiatives to provide support to headache patients outside

of clinical settings will reduce the demand on busy GP surgeries. Approaches to

support properly diagnosed migraine and tension-type headache patients through

ongoing ‘remote’ support from primary care specialists have the potential to save

CCGs money by reducing clinical appointments. Partnerships with third sector

organisations to deliver this care can ensure that patient outcomes are achieved’

Local Strategic Context 6

Sustainability and Transformation Partnership priorities 6.1Many of the Sustainability and Transformation Partnerships (STP) across the country

are focussing on moving care out of the acute sector and into the community closer

to home. There is also a focus on initiatives which provide easier to access high

Care closer to home

Increased activity

Cost pressures

RightCare Approach

STP priorities

New models of

Care

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quality care whilst delivering savings through reduction of admissions and use of

secondary care.

Care closer to home 6.2Currently many patients across the country have to travel beyond their CCG area to

receive care. The development of community clinics will improve patient experience

as care will be provided closer to home. Data in the Right Care Neurology focus pack

shows that for 2013-14 shows that in England only 49.8% of neurology outpatient

appointments (consultant) are seen in their home CCG.

Demographic pressures 6.3The population across England is predicted to rise by 16.5% in the period 2014 –

2039Error! Bookmark not defined.. A sustainable solution needs to be developed

to deal with the additional capacity needed for headache management.

AREA 2014 2018 2022 2026 2030 2034 2038 2039

%

increase

England (All Ages) 54,317 56,062 57,634 59,135 60,524 61,800 62,992 63,282 16.50%

Specific CCG data on demographics can be sourced at the following link:

https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationpr

ojections/datasets/clinicalcommissioninggroupsinenglandz2

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Hospital admissions with a mention of a neurological condition, England, age 20+

Primary diagnosis

on admission

episode

ordinary

(inpatient)

admissions

day case

admissions Total

ordinary

(inpatient)

admissions

day case

admissions Total

ordinary

(inpatient)

admissions

day case

admissions Total

ordinary

(inpatient)

admissions

day case

admissions Total

ordinary

(inpatient)

admissions

day case

admissions Total

Headaches and

migraine 65,252 8,223 73,475 69,136 10,561 79,697 70,664 12,163 82,827 73,189 12,612 85,801 12.16% 53.37% 16.78%

2012/13 hospital admissions

with mention of neurological

condition

2013/14 hospital admissions

with mention of neurological

condition

2014/15 hospital admissions

with mention of neurological

condition

2015/16 hospital admissions

with mention of neurological

condition % increase 2012 - 2016

Increase in activity 6.4The increase in neurology activity is marked and provides a clear case for the review of current management. The below data was

published in August 2017 and individual CCG data is available at the following link: *Neurology services: hospital activity data -

GOV.UK

The data below shows that in England there is a 12.2% increase in ordinary (inpatient admissions) and 53% increase in day case

admissions for Headache and migraines between 2012-2016 which highlights the importance of managing referrals early in the

community.

Increase in Emergency Admissions 6.5Between 2012 – 2016 in England there was a 10% increase in emergency hospital admissions with a mention of a neurological

condition and 13% increase in emergency hospital admissions where the primary diagnosis on admission is identified as

Headaches and Migraine.

Emergency hospital admissions with a mention of a neurological condition, England CCGs total, age 20+ (2012-2016)

(By neurological condition group)

Primary diagnosis on admission episode 2012/13 2013/14 2014/15 2015/16

% increase 2012

- 2016

Headaches and migraine 62,824 66,616 68,320 70,966 12.96%

Neurological condition total 186,429 192,410 198,448 205,214 10.08%

*Neurology services: hospital activity data - GOV.UK(accessed 23 August 2017)

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CCG specific data 6.6Specific Hospital Episode statistics data (HES) related to headache and migraine by individual CCG can help with development of

the case for change.

The following codes are relevant:

Headache ICD 10 codes : G44- Other headache syndromes, G440- Cluster headache syndrome, G441- Vascular headache, not

elsewhere classified, G442- Tension-type headache, G443- Chronic post-traumatic headache, G444- Drug-induced headache, not

elsewhere classified, G448- Other specified headache syndromes

Migraine ICD codes: G43- Migraine, G430- Migraine without aura [common migraine], G431- Migraine with aura [classical

migraine], G432- Status migrainosus, G433- Complicated migraine, G438- Other migraine, G439- Migraine, unspecified.

CCG/STP performance against comparators 6.7

Analysis of Right Care data in the Neurological focus pack published in 2016 enables CCGs and STPs to understand how they are

performing against Right Care Comparator CCGs and the average performance across England. It highlights opportunities for

savings and for improving outcomes. This data can highlight where prescribing or non-elective spend is more than comparator

CCGs or where there are more admissions and longer length of stay compared to comparator CCGs.

Neurology is highlighted as an area where outcomes can be improved and savings made in many STP areas as illustrated by the

following information from the Frimley STP and Buckinghamshire, Oxfordshire, Berkshire West STP.

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The vision for Headache management 7

‘To develop a headache pathway that allows patients with headache who need to be

seen in secondary care to do so quickly, while keeping in the community those

patients with headache who can be better managed there, through supporting GPs

in their independent practice and providing community headache services that are

cost-efficient, easier to access and care is delivered closer to home. Not only would

this improve patient care but also release capacity in over-stretched neurology

outpatient clinics’. Dr Richard Wood, Oxfordshire CCG

There are three key elements in the development of the optimal community headache

pathway.

1. Improvement in primary care recognition of primary headaches including migraine and medication overuse headache

2. Triage process to reduce outpatient clinic appointments

3. Development of community headache clinic

Improvement in primary care recognition of primary headaches 7.1

including migraine and medication overuse headache

The following section outlines potential ways to support improved diagnosis of primary

headaches in primary care. This can be supported as follows:

Education and Support for GP management of headache

Clear guidelines and proformas for diagnosis It is important that guidelines are provided to the GPs to show clearly what steps can be

tried prior to referral and to describe those cases when referral is important. The NICE

guidelinev for Headache provides the framework but the specialist neurologist experience

and learning can help interpret and enhance these.

Urgent referrals that include symptoms of brain tumours should be treated outside

the proposed headache pathway and have their own dedicated cancer pathway.

They are not included in the proposal.

Learning opportunities Opportunities should be found to educate qualified and GPs in training on what to look out

for. When it is felt a referral can be handled by the GP it should be returned with

comprehensive advice from the specialist for continued management.

Structured Education and Support for Patients to self-care When people self care and are supported to do this, they are more likely to:

experience better health and well-being

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reduce the perceived severity of their symptoms, including pain

improve medicines compliance

prevent the need for emergency health and social services

prevent unnecessary hospital admissions

have better planned and co-ordinated care

remain in their own home

have greater confidence and a sense of control

have better mental health and less depression

Patients need targeted education on headaches and when to seek medical advice and particular education around medication overuse headache. In some areas, clinics have been set up for those who have received a positive diagnosis of migraine, to provide education and effective treatment in a group environment which aims to reduce the patient’s migraine related disability and improve their ability to manage their migraine independently, reducing reliance on medical services for management of migraine over the longer term.

Support for Pharmacists Pharmacists play a key role in dispensing over the counter or prescribed medication to

patients with headache and need to be supported in delivering targeted patient education

especially around medication overuse headache.

Specialist triage of referrals 7.2In order to ensure that the optimum pathway is considered for each patient referred by a

GP or from another consultant in the hospital it is important that a triage process is

undertaken. The consultant can also be contacted for advice around patients attending

Accident and Emergency with headache.

The triage needs to be undertaken by a neurology consultant who will also provide advice

to referrers, interpret imaging reports and provide clinical oversight and support to the

community clinicians. There should be a robust mechanism (ideally electronic portal) for

communication between the consultant undertaking the triage, the GP referrer, the

community clinic and the hospital.

After reviewing the referral the neurology consultant could manage the referral in the

following ways:

– Provide advice back to referrer for continued management • Where clearly a primary headache (such as migraine)

– Offer appointment at Community Based Headache clinic • Where patient needs more support than GP can provide (mainly

migraine, tension-type headache, and cluster headache but also medication overuse headache and chronic post-concussion headache)

• Where investigations are not required

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– Arrange Imaging without outpatient appointment • If it is felt imaging is needed (typically structural MRI head without

contrast) this could be arranged without a face to face clinic appointment

• If the scan is normal the patient can then be managed in the community clinic of by the GP or have an appointment at outpatients if further investigation needed

– Offer General neurology outpatient clinic appointment • If patients have headaches with neurological signs or red flag

symptoms that require an underlying pathology to be ruled out so further investigations are needed

– Offer Specialist headache clinic appointment • Rarely the consultant may feel the patient should receive specialist

consultant neurology assessment and management directly rather than through presentation at a general clinic

– Refer to Physiotherapist

Rarely it may be appropriate to refer directly to physio (eg for those with clear cervicogenic headache)

An audit of a cohort of 135 patients in Oxfordshire by 3 consultant neurologists suggested

that the likely split between the above options is as follows:

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Referral

Headache pathway

Patient education and advice from

Pharmacy

GP

Headache consultant

triage

Neurology outpatient clinic

Specialist Headache clinic

MRI without outpatient

appointment

GP management

A and E

Community Headache Clinic

Urgent referrals that

include symptoms of brain

tumours have their own

dedicated 2 week cancer

pathway.

Advice

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Development of a community headache clinic 7.3

A community headache clinic could be run by headache specialist nurse or GP

with a special interest in headache with the training and support of the consultant

where needed. It would manage primary headache disorders such as migraine,

tension-type headache, cluster headache, chronic post-concussion headache and

can provide long term consistent care close to home if appropriate.

It is important to select the locality of the clinic carefully with reference to the local

population and likely number of referrals. Patient engagement and involvement of

patient participation groups in the planning at an early stage is vital.

The clinic will need a robust information sharing mechanism with the hospital and

the GP practices to make referrals management and appointment booking effective

and efficient. Ideally this will be through an electronic portal. Administration support

to process bookings and arrange follow ups and maintain communication with the

patient’s GP is also important.

There is also evidence of a link between anxiety/depression and headache.

Although not fully understood a study in the Journal of Neurology, Neurosurgery, &

Psychiatryvi of 107 patients with Chronic Cluster Headaches, 75 percent were

diagnosed with an anxiety disorder and 43 percent with depression. The inclusion of

psychological support within the pathway merits consideration.

Cost savings 7.4

The savings from this community model come from the difference in the charges for

appointments in the general neurology outpatient clinic and in the community

headache clinic. The cost savings will obviously depend on local numbers and

situations but the below Oxfordshire chart identifies how savings may be made if

referrals are managed according to the expected triage as shown on page 13.

The Oxfordshire pilot shows that the tariff for a first appointment in a community

health clinic (which is set to cover costs of the clinic and triage and training) is likely

to be 43% of the cost of a hospital first outpatient appointment

The below table shows savings for those patients who are currently seen in

outpatient clinic but could be seen elsewhere. It is based on a cohort of 1100

patients of which 6% could have imaging without appointment, 10% could be

referred back to GP and 50% (550) could go to Community health clinic.

The clinic costs are based on managing the cohort of 550 patients plus their

anticipated follow-ups. They are based on 3 clinics for 42 weeks a year with 6 x 30

min appointment in each clinic (18 appointments x 42 weeks = total of 756 x 30 min

appointments). Calculation of anticipated follow up rate is complex and will differ

according to clinician involved but the chart below is worked on an estimate and an

assumption that a follow-up appointment would take 15 minutes.

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Savings for the 66% of patients who are currently seen in outpatient clinic but could be seen elsewhere

Savings come from: - Reduced tariff of CHC

(for which 50% referrals now seen)

- Sending 6% of referrals to MRI without appointment

- Advising GP without seeing patient in 10% of cases

Includes cost of time for referral triage, ordering and interpreting MRIs, advice to GP, supporting community clinic, and pathway oversight

Community clinic tariff for 30min appointment is £110

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Cost of the new service in your area 7.5Each CCG will be paying different amounts for their outpatient first and follow up

appointments and will incur different local set up costs but the principles of where

savings can be made remain the same.

Apart from the savings made through referrals which are: 1) returned to the referrer 2) have imaging and are then returned to the referrer 3) take place in the community rather than the outpatient clinic there may be additional savings from seeing follow ups, of the referrals which were initially seen in the hospital, within the community clinic It is important to highlight that If the released appointments in the neurology clinic are

used for seeing patients rather than decommissioned this will obviously impact on

any potential savings. However, the clear benefit of having hundreds of additional

appointments available to see more appropriate referrals in the acute hospital clinic

to support the 18 week pathway cannot be underestimated.

The following areas need to be considered when setting up a new pathway:

– Cost of Consultant Neurologist time to triage referrals – Training costs for Neurology consultant to train community clinic specialist

(GP with special interest or specialist nurse – Numbers of patients likely to be seen in community clinic (1st appointments

and follow ups) – Costs of running weekly clinic (30 min first appointment slot for each patient

plus follow ups) – Cost of Clinician time in clinic plus admin time – Cost of Management time – Patient/PPG involvement and engagement in the design of the service – Secretarial time (20 mins per patient for report) – Receptionist/admin time for booking and attendance at clinic – Service charge (rent clinic space, utilities etc) – Governance and Indemnity premium (may be negotiated with acute Trust) – Education programme costs – Psychological support – Information technology to ensure joined up service – Key performance indicators/metrics

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Summary 8

The evidence from the Oxfordshire CCG community headache pilot has evidenced

that cost savings can be made, patient experience and outcomes improved and

pressure on hospital clinics reduced through the set up of community provision for

headache.

It is hoped that CCGs across the country will review their case for change and use

some of the learning from the Oxfordshire experience in order to enhance the care

and experience of local patients.

In summary, it is anticipated that the following benefits will be realised:

Provision of a more efficient local service Appropriate care closer to home

Improved patient experience as faster access to the right support

Improved knowledge and skills in primary care

Improved use of finances to ensure cost effective and appropriate expenditure

Transfer of care from the acute to the community

Improved patient outcomes as patients who need to see a specialist have quicker access

Closer links with third sector support in the community

Increased capacity in outpatient clinics reducing waiting times

Improved patient education and self management

Increased communication between primary and secondary care supporting learning

Reduction in number of referrals to secondary care which can be managed in primary care

Increased consistency of care Reduction in A and E admissions and attendances due to easier access to support

The community pathway is due to be set up in Oxfordshire in early 2018. For further information please contact: Dr Zam Cader, Consultant in Neurology zameel.cader@ndcn.ox.ac.uk Dr Richard Wood, GP Richard.Wood@oxfordshireccg.nhs.uk

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References

i Headache Services in England - A Report of the All-Party Parliamentary Group on

Primary Headache Disorders 2014

https://www.migrainetrust.org/wp-content/uploads/2015/12/APPGPHD-Report-on-

Headache-Services-in-England-–-Full-Report.pdf

ii Latinovic R, Gulliford M, Ridsdale L (2006) Headache and migraine in primary care: consultation, prescription, and referral rates in a large population. J Neurol Neurosurg Psychiatry 77:385–387 iii WORLD Health Organisation factsheets http://www.who.int/mediacentre/factsheets/fs277/en/ iv Migraine Trust facts and figures on Migraine https://www.migrainetrust.org/about-migraine/migraine-what-is-it/facts-figures/ v NICE guidance on management of headache https://www.nice.org.uk/guidance/cg150

vi Donnet A, Lanteri-Minet M, Guegan-Massardier E, Mick G, Fabre N et al. Chronic cluster headache: A French clinical descriptive study.J Neurol Neurosurg Psychiatry 2007;78:1354–1358.