long term neurological conditions strategic health needs assessment [email protected]...

Long Term Neurological conditions

Strategic Health Needs [email protected]

[email protected]

mailto:[email protected]

mailto:[email protected]

Structure and contents1Executive summary2Introduction3Prevalence and incidence

a) Demographicsb)

Current numbers of patients with selected neurological illnesses

EpilepsyPDMSMND

c)Projected growth in prevalence4Health care utilisaiton and health outcomes and spending on health care

a)Health care utilisation for neuro illness generallyb) Epilepsyc) PDd) MSe) Othersf)

Programme Spend on Neurological Illness and economics.

5Services in Bradford and Airedalea)Overview of current service model. Generalist and in each of main disease areasb)What are the priorities for service improvement and investment

6 Guidelines and best practice in treatment of neurological illness

a)National Service Frameworkb)NHS Scotlandc)Association of British Neurologistsd)Disease specific Clinical Guidelines (Epilepsy, MS, PD)

7 Summary and key issues to addressa) Data, epidemiology, service utilisation a

nd outcome.b) District priorities for changec) Service configuration and model of cared) Commissioning and planning framework

8 Selected references

1 Summary and key messages

See Section at endTo add when agreed through LTNC

Steering Group

2 Introduction

Scope of neurological illness, and description of some specific illnessesWhat are ‘neurological services’Routes into neurological services Which groups of patients utilise what services

Back to contents Back to section head

Background and introduction• People with neurological illness have a disproportionately

high burden of sensory loss, cognition and communication problems (carers burden and other issues to do with social and emotional well being of patients)

• Neurosciences has a relatively low profile when compared with CV, cancer etc

• This low profile is not helped by disparate nature of diseases and relatively disparate (if any planning arrangements across all neurological care)


Characterisation of Neurological conditions.

• It is expected that number of people with neuro conditions will grow significantly over next two decades.

• Ageing, population growth are major factors in this.• Medical staff often have conflicting views on what services counted as

neurology. Most frequently this definition includes:– Brain injury / Ep / MND– MS– PD / Stroke

• agreement of this list is not universal. many other diseases and conditions also contribute to the workload of neurology


Definition • No simple definition of a neurological disorder. It is usual to consider the

following types of condition as neurological:– All structural disorders of the central nervous system (the brain and

spinal cord)– All structural disorders of the peripheral nervous system (the nerves in

the face, trunk and limbs).– Disorders involving muscle.– Certain common conditions, which are not necessarily caused by

structural disease (such as many varieties of headache).– Other conditions (such as epilepsy, fainting and dizziness), which are

often caused by disordered physiology, rather than abnormal anatomy.


Implications for health and social care, and the economy.

• Neurological illnesses range from slow progressive relapsing remitting conditions such as MS to acute onset brain injury – often with long term ramifications.

• Thus flexibility of response in services is needed• Not all patients who have symptoms that can be classified as

‘neurological’ are seen by a neurologist• This work started as an assessment of need for ‘services for people with

long term neurological conditions’ (as defined in the NSF). As it developed it became a broader assessment of need in neurology more generally.

• Neurological conditions account for 20% of acute hospital admissions, 10% of A& E attendances and one third of GP attendances. (Jader)

• It is estimated that 65% of people with a neurological condition are of working age with a range of possible prognoses of 14 months to some conditions that impact on their lives for up to 30-50 years.


complexities in the planning and commissioning of services for people who require care and support

• Range of agencies /services involved from regional /sub regional tertiary centres to local community services,• Scope well beyond health social care including social care and housing and children’s services.• The number of conditions, diverse range of needs and complexity of the pathways• Lack of access to public health data and information.• There are multiple demands on commissioners with wide portfolios of work, to meet the performance standards and quality

markers in this complex clinical area. • This results a lack of capacity to prioritise issues, duplication of effort across PCTs, inconsistency in collection, interpretation of

data and decision making, inappropriate use of commissioners time due to needing to react to multiple national and local lobbying groups or requests for FOI and potential fragmented relationships with commissioners across the neurological pathways (specialised commissioning and PCTs.)

• Changes in designation of specialised commissioning (national) and potential impact on responsibilities of both specialised commissioners and primary care trusts in redesigning the shift towards care closer to home in the community

• An apparent Inequality of access and consistency of standards of practice across the region • The impact of the personalisation agenda, both in opportunities and risks, including personalised budgets, in areas of unmet or

unrecognised need and high levels of need for continuing care• The younger age profile and demographic issues, of people with a long term neurological condition and the social context in

which expectations and decisions about their level of care and support is increasing.• The relative scarcity and location of the skilled workforce, neurologists, allied health professionals, specialised nurses and

subsequent demand on their time and function.• The strength, contribution, role and local issues of the voluntary /charitable sector in this field.• Access to advice and engagement with clinicians especially if tertiary /secondary centres are out of area for PCTs.• Medical/clinical model inappropriate to deliver the pathways within the NSF LTnC, especially for those with an enduring or

progressive disability requiring social and or community support.


Chapter VI of ICD10 - Diseases of the nervous system (G00-G99)

G00-G09 I nflammatory diseases of the central nervous system

G10-G13 Systemic atrophies primarily affecting the central nervous system

G20-G26 Extrapyramidal and movement disorders G30-G32 Other degenerative diseases of the nervous system G35-G37 Demyelinating diseases of the central nervous system

G40-G47 Episodic and paroxysmal disorders G50-G59 Nerve, nerve root and plexus disorders G60-G64 Polyneuropathies and other disorders of the peripheral

nervous system G70-G73 Diseases of myoneural junction and muscle G80-G83 Cerebral palsy and other paralytic syndromes G90-G99 Other disorders of the nervous system


What services provide care for this population?

• Wide range of services provide care for people with neurological conditions:– General practice– Outpatient – diagnosis, management plan,

rehabilitation– A&E– Inpatient (elective and acute)– Social care (statutory and vol sector)– Other


People other than neurologists provide most of the care

• Large number of neurological disorders are very common and dealt with by specialties other than neurology and neurosurgery– Stroke patients – looked after in general medicine– Elderly looked after by geriatric medicine – even where

there are issues such as PD. – The referral threshold (when do we call the neurology

team) may differ from place to place – depending on workload, skill mix, historical precedent, capacity etc

– Common issues looked after in general practice


Specific neurological diseases


Epilepsy - Overview

Background notes below in notes page


Multiple Sclerosis - Overview



Parkinson's Disease Overview



3 Prevalence and Incidence

a) Demographics, demographics and risk factorsb) Current numbers of patients with selected neurological

illnessesc) Projected growth


a) Populations, demographics and risk factors

DeprivationAge

Ethnic diversity


Index of Multiple Deprivation 2007

We have a younger population than E&W

Bradford England and Wales

Under 16 23.4 20.2

16 to 19 5.6 4.9

20 to 29 13.4 12.6

30 to 59 38.7 41.5

60 to 74 12.2 13.3

75 and over 6.8 7.6

Average age 36.4 38.6

To contents

b) Current numbers of patients with selected neurological

illnesses

Prevalence estimates vary depending on whom you ask. Interpret with caution


Prevalence estimate 1 – DH (Neuro Numbers / NICE)

DH estimated the incident and prevalent rate of Neurological Disorders when compiling the NSF.


Estimate 2. Jader L. 2007. Approx 5.8% of populations of Wales are affected by neurological disorders


Bradford compared to National Model

Bradford and Airedale. 502k p. 2009 JSNABradford numbers from System 1 are roughly consistent with modelled estimates for epilepsy and MND. However, System 1 reported Parkinson's Disease and MS are both considerably lower than the modelled estimate. This may be due to problems with the model or the fact that the population age structure (and risk profile) for Bradford is somewhat different to the national picture (see earlier slides).

ConditionNational

Prevalence*

Expected Number*

This will calculate automatically

Known Number

In Audit? Use Drop down List Notes

Aphasia 0.370% 2009 -Acquired Brain Injury 0.183% 994 -Acquired Spinal Cord Injury 0.070% 380 -Ataxia 0.010% 54 -Cerebral Palsy 0.170% 923 -Charcot-Marie Tooth Disease 0.038% 206 -Dementia & Early Onset Dementia 1.180% 6407 -Dystonia 0.062% 337 -Encephalitis 0.396% 2150 -Epilepsy 0.770% 4181 5933 -Essential Tremor 0.500% 2715 -Huntington's Disease 0.016% 87 -Hydrocephalus 0.010% 54 -Migraine 13.220% 71781 -Motor Neurone Disease 0.008% 43 47 -Multiple Sclerosis 0.180% 977 614 -Muscular Dystrophy 0.050% 271 -Myasthenia Gravis 0.016% 87 -Narcolepsy 0.160% 869 -Neurofibromatosis 0.039% 212 -Parkinson's Disease 0.198% 1075 547 -Post Polio Syndrome 0.396% 2150 -Progressive Supranuclear Palsy 0.016% 87 -Spina Bifida 0.023% 125 -Stroke 0.495% 2688 -Syringomyelia 0.008% 43 -Tourette's Syndrome 0.050% 271 -Transverse Myelitis 0.001% 5 -Trigeminal neuralgia 0 -Tuberous Sclerosis 0.013% 71 -Others: 212 -

Data taken from a range of sources – Jader, NSF / Neuro Numbers, NGO websites

Local Prevalence of some conditions – taken from data in System 1 practices

Disease 95%ci (-) DSR 95%ci (+) Prevalence (numbers) Prevalence % (crude) Crude rate per 100,000MS 100 109 118 614 0.11 113.1

PKD 70 76 84 547 0.10 100.7MND 6 8 11 47 0.01 8.7

Epilepsy 745 769 793 5933 1.09 1092.7

Bradford Calcluations of Neurepidemiology From SystemOne Data

System One is probably our best source of information, given the high number of GP practices now on the system (85%) and the fact that it is typically preferable to use observed rather than modelled data in studies where the local demographics are different to those found nationally (as in Bradford).

Significant uncertainties in the data on epidemiology and need.

• There is a dearth of up to date comprehensive epidemiological studies in this area.• There is no good surveillance system in this area.• There are a number of pitfalls in the use of mismatched epidemiological measures? Eg

– comparing point prevalence, period prevalence, standardised and crude rates and rates standardised to different populations.

– Many of the reference populations on which estimates are drawn are old, may have changed significantly from the time of estimation – and may not be reflective of our population.

– Measures of prevalence can change markedly over a 10 year period. With many chronic conditions, the new incident rate may be higher than the death rate – therefore prevalence grows steadily even in a population of static size. Population growth and demographic shift may exacerbate this significantly.

– The cumulative multiplication of multiple errors may in effect cause an over estimation of need; possibly by a considerable margin.

• The extent of accuracy of data depends greatly on case ascertainment; and interrogation of clinical records

• The incidence and resulting prevalence of neurological conditions which give rise to the need for rehabilitation has been shown to be highly variable across localities

• This variability results from the complex interactions of demographic, lifestyle and socio-economic circumstances

• Planning for local services thus requires attention to a variety of key indicators, including baseline epidemiological data, and clinical epidemiological data on the consequences and associated need for rehabilitation arising from these conditions


Example of dangers of inappropriate use of epidemiological data from elsewhere

Bradford rates are age standardised per 100,000 population using European baseline

We have considered the figures in Cockerell’s paper on “Neuroepidemiolgy in the UK” that our original estimates came from and traced the original references. Looking at the original papers cited, Cockerell is actually quoting standardised prevalence ratio’s for MS and not a DSR per 100,000 as the table in his paper states. For Parkinson’s disease, the data he quotes are based on an age and sex specific prevalence figure for Glasgow and not a rate per 100,000 as he claims.


Area LCI DSR UCI Area LCI DSR UCIMS 100 109 118 MS nk 110 nk

PKD 70 76 84 PKD 160 180 200MND 6 8 11 MND 4.6 5.8 7

Epilepsy 745 769 793 Epilepsy nk nk nk

Bradford Calculations from Sys1 Cockerell's Calculations

Epilepsy Prevalence


Epilepsy Prevalence in Bradford and Airedale – from epidemiological studies

• National estimates of prevalence and incidence– Incidence 50/100,000 / year (range 40-70/100,000 (1,2,3,4))– Prevalence usual figure given for prevalence in UK is 500-

1000/1000,000 (5). 770 /100,000 used as best estimate by NICE (6)

NB• 20% misdiagnosis rate• Combined factors of remission, surgery and death keep

prevalence relatively stable.


Observed Prevalence – from READ coding in System 1 practices

• Epilepsy (F25 + Children) system 1. Local estimate– Bradford – the numbers of cases identified from local data may

overestimate prevalence– A data extraction was performed on System 1 practices (Dates) for

READ codes for Epilepsy (at any time)– 62 practices were using system 1 at the point of data extraction

(354,269 people registered). Representing approx 65% of the practice population registered in the district.

– 5933 cases (all ages) of epilepsy were identified. This represents an approximate all age prevalence rate of 1092 / 100,000, well in excess of the upper limit of the normally quoted prevalence range. It is most likely this is due to over counting of cases, with some cases identified in this data extraction more than once.

– Aggregated to the city, this would equate to approximately 8855 cases of epilepsy.

• NB exercise extreme caution in data interpretation from this


Adult Epilepsy Prevalence (QOF)2978 cases of ADULT epilepsy receiving drug treatment recorded in Bradford and Airedale (QMAS April 2008)

The prevalence of adult epilepsy in Bradford and Airedale is not significantly different from the England Average

The bars on the chart indicate the range of recorded prevalence at practice level.

The table below gives a summary of number of adult cases at Alliance level.

The prevalence of adult epilepsy in Bradford and Airedale, as measured through QOF is not significantly different from the England Average


Wide range of prevalence of epilepsy at Practice level

% prevalence of epilepsy. Practice level. QOF 07 08

0.00

0.20

0.40

0.60

0.80

1.00

1.20

1.40

1.60

%prevalence (NBdenominatorerror 20+pop)

District Average is 0.76% of population

NB Adults only. There is denominator error in this chart, the denominator is 20+yrs old. This error is systemic across all practices.

There is a wide range of prevalence of epilepsy within practices in the district.

This might be accounted for by some or all of the following factors:

•Under-ascertainment,

•Age structure

•Random chance


System One data On Epilepsy in Bradford

Epilepsy in Bradford

95%ci (-) 745.5DSR 768.895%ci (+) 792.6Prevalence (numbers) 5933.0Prevalence % (crude) 1.1Crude rate per 100,000 1092.7

A prevalence forecasting model suggests the following:

By 2015: 307 extra cases of EpiBy 2020: 564 extra cases of EpiBy 2030: 1364 extra cases of Epi

NB QOF Crude prevalence = 0.7%

Due to difficulties in interpretation and coding, it is likely that the QOF prevalence is the more accurate marker.

PD Prevalence


Range of prevalence estimatesLocal• Locally estimated Directly Standardised prevalence of PD – 76.4

cases / 100,000 population (95% CI 69.6 – 83.7)• Crude prevalence rate of 100.7 / 100,000

National • The estimates prevalence of PD vary widely. • A prevalence estimate can be taken from NICE - 200 / 100,000 population. • The annual incidence of new cases of Parkinson's disease is estimated to be 4–20

per 100,000 people in developed countries with age distributions similar to those in Northern European countries. Most settle on an incidence rate of 17 / 100,000 (NICE)

• Caution – significant discrepancies in estimation of prevalence. Treat with caution.


PKD in Bradford



By 2015: 23 extra cases of PKDBy 2020: 51 extra cases of PKDBy 2030: 106 extra cases of PKD

System One data On PD in Bradford

MS prevalence


MS in Bradford



By 2015: 23 extra cases of MSBy 2020: 51 extra cases of MSBy 2030: 106 extra cases of MS

System One data On MS in Bradford

Range of prevalence estimatesLocal• Locally estimated Directly Standardised prevalence of MS -

108.6 cases / 100,000 population (95% CI 99.8 – 118)• Crude prevalence rate of 113.1 / 100,000 this is a locally

derived estimate from analysis of S1 dataNational • Incidence - NICE estimate is Between three and seven people

per 100,000 population are diagnosed with MS each year • 100 to 120 people per 100,000 population have MS. • Recently published Health Technology Assessment made

estimates of prevalence of 77 – 121 / 100,000. 77 / 100,000 was in Leeds.


MND


Range of prevalence estimates

• Locally estimated Directly Standardised prevalence of MND – 8 cases / 100,000 population (95% CI 5.8 – 10.7)

• Crude rate of 8.7 / 100,000 this is a locally derived estimate from analysis of S1 data

National• Estimate in NSF of 7/100,000 prevalent rate and 2/100,000 new incident rate• Numbers are small so caution – forecasting indicates an increase in prevalence of

3 new cases by 2015, 5 new cases by 2020 and 11 additional cases by 2030


MS in Bradford


ABI / TBI

No forecasting of new incident rate (new cases) or prevalent rate (existing and ‘ongoing’ cases) is available. Nor is a forecast into the future There are significant uncertainties with the data. This reflects uncertainties in coding and counting. This is a nationally acknowledged weakness in our surveillance systems. It makes planning more difficult.

Migraine

No forecasting of new incident rate (new cases) or prevalent rate (existing and ‘ongoing’ cases) is available.

Nor is a forecast into the future There are significant uncertainties with the data. This is a nationally

acknowledged weakness in our surveillance systems. It makes planning more difficult.

c) Projected growth in prevalence






•For MND numbers are small so caution – forecasting indicates an increase in prevalence of 3 new cases by 2015, 5 new cases by 2020 and 11 additional cases by 2030

Takes into account estimated prevalent rate and population growthDoes not take in to account death rate – thus assumption is made that death rate = incident rate (therefore steady state – and pop growth is main driver of growth). Difficult to get death rate specifically for people with certain neuro illnesses – a combination of cause specific (how many die FROM PD in any given year) and general AACM (how many p die WITH PD in any given year) – technically difficult to do this without v detailed analysis (more detailed than can be done in routine work)

NB Caution re interpretation. Estimate based on S1

4 Health care utilisation and health outcomes and spending on health care.

Health care utilisation for neuro illness generallyEpilepsyPDMSOthersProgramme Spend on Neurological Illness and economics.


a) Health care utilisation for neurological illness generally


Most of neurological workload seen within general practice.

• Estimated that 9.5% of people consult their GPs annually due to a neurological problem.

• Estimated that neurological problems are the third most common reason for visit to GP Of this group 7.5% are referred to OP for further advice.

• The majority of patients with neurological illness are principally looked after by GPs.


A&E use for people with neurological conditions

Little if any data!


V limited data

• 10%of visits to A&E (Jader L / neuro numbers))• whilst we know relatively little – there is reasonable evidence

(tacit, rather than citable) that many people with neuro conditions do not see a neurologist in A&E or MAU;

• and that prompt neuro asst might reduce need for admission; and significantly improve chance of full long term rehab etc


Outpatients and inpatients


Data-source for OP and IP information

• An 3 year extract of data was taken from HES (06/07 to 08 09).

• All admissions (elective, non elective and emergency)• Patients registered with an NHSBA GP, regardless of

provider.• Inpatient spells where a neurological illness was

recorded in the primary or secondary diagnosis codes.

• All OP attendances within Neurology or sub specialty codes.


Outpatient Utilisation for Neurological Conditions


Referrals to neuro outpatients. NHS Bradford and Airedale. 06/07 – 08/09

Spend on MS Fiscal Year Cost Consultations2006/07 36519 2222007/08 31883 2402008/09 47535 341

last 3 years 129657 890

Spend on PKD Fiscal Year Cost Consultations2006/07 44637 2502007/08 47922 3142008/09 60868 391

last 3 years 181059 1125

Spend on OP Fiscal Year Cost Consultations2006/07 704193 45412007/08 771416 51092008/09 925916 6198

last 3 years 2737802 18124

Key messages• Data is available on spend in OP for MS

and PD.• For both, number (and thus total cost)

of consultations has increased consistently over the last 3 full years for which data is available.

• It is unclear whether this is the result of a pathway change, a service configuration change, a change in underlying need, a change in threshold of referral or other reasons.

• ‘non consultant’ referrals are mostly GP referrals.

• Further analysis may be warranted, and might consider the 1st:FU ratio, and whether this is changing.

• Fuller dataset is collated and available on request.

• Practice level analysis is possible.

Fiscal Year Referral Initiator Cost Consultations2006/07 Consultant 26479.1392 180

Non Consultant 321700.7737 2053Not Recorded 19607.5764 206Unknown 336405.9902 2102

2006/07 Total 704193.4795 45412007/08 Consultant 8289.4165 72


2007/08 Total 771416.1737 51092008/09 Consultant 9442.8922 101


2008/09 Total 925915.546 61982009/10 Consultant 2835.1564 31yr not complete Non Consultant 302575.332 2047

Not Recorded 2122.5089 9Unknown 28744.0462 189

2009/10 Total 336277.0435 2276Grand Total 2737802.243 18124


OP Spend over time


£0

£100,000

£200,000

£300,000

£400,000

£500,000

£600,000

£700,000

£800,000

£900,000

£1,000,000

2006/07 2007/08 2008/09

Hospital OP load clearly does depend on local policy concerning follow up and supervision; also on the availability of GPwSI to take on some of the routine work that would otherwise have been taken on by a neurologistAssume that each patient is seen twice following diagnosis (once to convey the diagnosis, once to answer any specific questions); then followed up once or twice per year

IP Episodes for neurological conditions

Unless otherwise specified, y axis on graphs is spend.


Acute Neurological Care• No consensus on what constitutes an acute neurological condition.• Ideally all patients with acute neurological problem might be seen on a specialist

unit, this does not seem achievable.• Variation in the provision of care for neurological emergencies will continue to

depend on such factors as:– Patterns of patient referral.– Availability of neurology beds.– Availability of neurology staff.– Local organisation of acute medical services.– Availability of specialised neurological intensive care and high dependency

facilities• Whilst it might be unrealistic and unachievable for all patients with an acute

condition of neurological nature to be seen and cared for by a neurologist – there is a vital role for the neurologist (and their MDT) in setting clinical standards for management.


All admissions. Primary HRG.

0

1000000

2000000

3000000

4000000

5000000

6000000

2006/07 2007/08 2008/09

A - Nervous System

B - Eyes and Periorbita

C - Mouth Head Neck and Ears

D - Respiratory System

E - Cardiac Surgery and Primary CardiacCondition

F - Digestive System

G - Hepatobiliary and Pancreatic System

H - Musculoskeletal System

J - Skin, Breast and Burns

K - Endocrine and Metabolic System

L - Urinary Tract and Male Reproductive System

M - Female Reproductive System and AssistedReproduction

N - Obstetrics

P - Diseases of Childhood and Neonates

Q - Vascular System

S - Haematology, Chemotherapy, Radiotherapyand Specialist Palliative Care

V - Multiple Trauma, Emergency and UrgentCare and Rehabilitation

W - Immunology, Infectious Diseases and othercontacts with health services

A - Nervous System 2006/07 4,567,454H - Musculoskeletal System 2006/07 1,604,519D - Respiratory System 2006/07 1,056,410W - Immunology, Infectious Diseases and other contacts with health services 2006/07 1,002,813F - Digestive System 2006/07 827,610L - Urinary Tract and Male Reproductive System 2006/07 755,132P - Diseases of Childhood and Neonates 2006/07 641,678E - Cardiac Surgery and Primary Cardiac Condition 2006/07 583,319C - Mouth Head Neck and Ears 2006/07 312,322Q - Vascular System 2006/07 232,201

A - Nervous System 2007/08 4,824,427H - Musculoskeletal System 2007/08 1,721,441W - Immunology, Infectious Diseases and other contacts with health services 2007/08 1,225,564D - Respiratory System 2007/08 1,127,437L - Urinary Tract and Male Reproductive System 2007/08 952,012F - Digestive System 2007/08 943,413E - Cardiac Surgery and Primary Cardiac Condition 2007/08 689,480P - Diseases of Childhood and Neonates 2007/08 554,452Q - Vascular System 2007/08 289,254C - Mouth Head Neck and Ears 2007/08 286,810

A - Nervous System 2008/09 5,694,558H - Musculoskeletal System 2008/09 2,080,953D - Respiratory System 2008/09 1,814,837W - Immunology, Infectious Diseases and other contacts with health services 2008/09 1,664,086L - Urinary Tract and Male Reproductive System 2008/09 1,188,576F - Digestive System 2008/09 1,110,183E - Cardiac Surgery and Primary Cardiac Condition 2008/09 864,435P - Diseases of Childhood and Neonates 2008/09 768,124C - Mouth Head Neck and Ears 2008/09 361,814J - Skin, Breast and Burns 2008/09 348,139

Most people admitted with a diagnosis of neurological illness are recorded under a ‘nervous system’ HRG. Y axis is spend.


All Admissions. Primary diagnosis.

0

500000

1000000

1500000

2000000

2500000

3000000

3500000

4000000

2006/07 2007/08 2008/09

Multiple Sclerosis

Parkinsons Disease

Parkinsons Disease (inc SPism)

Epilepsy

MND

Admissions for epilepsy appear to be increasing. Admissions for other main disease groups appear to be relatively stable


Admission for neurological problems. By Type of admission, and main diseases.

Fiscal Year Spells Cost LoS2006/07 5895 12337566.1 496282007/08 6097 13459182.22 512192008/09 7379 17150527.5 550752009/10 2407 5471047.213 17415Grand Total 21778 48418323.02 1733372006/07 1223 1568406.28 21602007/08 1212 1737178.349 42662008/09 1493 2001248.876 28482009/10 513 708799.86 1024Grand Total 4441 6015633.365 102982006/07 4436 9825251.004 440962007/08 4687 11023866.86 444362008/09 5632 14177846.99 488512009/10 1829 4588887.943 15725Grand Total 16584 39615852.79 1531082006/07 236 943908.8149 33722007/08 198 698137.01 25172008/09 254 971431.6342 33762009/10 65 173359.41 666Grand Total 753 2786836.869 9931

Inpatients Parkinsons Disease Fiscal Year Spells Diagnosis CodesCost LoS

2006/07 372 1631 911801.7 3888

2007/08 422 1919 1124029 4965

2008/09 446 2464 1094838 3884

2009/10 166 960 432219.1 1812

Grand Total 1406 6974 3562888 14549

Inpatients Parkinsons Disease inc SPism Fiscal Year Spells Diagnosis CodesCost LoS

2006/07 375 1638 918548.3 3895

2007/08 428 1946 1137732 5043

2008/09 456 2527 1125771 3970

2009/10 167 967 435539.1 1840

Grand Total 1426 7078 3617590 14748

Inpatients Multiple Sclerosis Fiscal Year Spells Diagnosis CodesCost LoS

2006/07 288 851 477049.4 2092

2007/08 301 969 471175.8 1487

2008/09 376 1478 685369.3 2269

2009/10 132 595 218297.7 545

Grand Total 1097 3893 1851892 6393

Inpatients Epilepsy Fiscal Year Spells Diagnosis CodesCost LoS2006/07 1594 6357 2459033 68572007/08 1648 6714 2665491 68822008/09 2008 9483 3423961 91602009/10 623 3046 1071430 2691Grand Total 5873 25600 9619915 25590

Inpatients MND Fiscal Year Spells Diagnosis CodesCost LoS2006/07 36 98 89230.27 2902007/08 25 102 46606.73 1142008/09 43 209 86865.33 2882009/10 10 55 20051.7 85Grand Total 114 464 242754 777

All neurological by main disease group


Further work needs to be done on the medical / surgical split.

Spend by admission type – emergency admissions are increasing markedly

• Elective admissions are relatively stable. Emergency admissions appear to be increasing markedly. Whether this is as a result of changes in baseline need, pathways or service configurations or other reasons is unknown.

0

2000000

4000000

6000000

8000000

10000000

12000000

14000000

16000000

2006/07 2007/08 2008/09

Elective Admissions

Emergency Admissions

Other non-elective


Non Elec Spend on neurological illness. By PBC Alliance.

Fiscal Year SpellsDiagnosis Codes Cost LoS2006/07 766 2525 £1,698,897 92032007/08 915 3811 £1,858,200 116522008/09 1042 4541 £2,631,105 114662009/10 382 1617 £976,411 4339

Fiscal Year SpellsDiagnosis Codes Cost LoS2006/07 1038 3933 £2,222,538 95052007/08 1001 3941 £2,325,124 75132008/09 1226 6475 £2,994,611 91802009/10 378 1967 £885,910 2718

Fiscal Year SpellsDiagnosis Codes Cost LoS2006/07 1562 6359 £3,786,729 151982007/08 1664 7025 £4,206,045 147592008/09 2045 10977 £5,254,910 169392009/10 643 3645 £1,545,196 4685

Fiscal Year SpellsDiagnosis Codes Cost LoS2006/07 1162 4671 £2,716,514 119852007/08 1120 4629 £2,871,774 110642008/09 1366 7461 £3,730,381 126472009/10 434 2471 £1,209,944 4230

Aire

dale

City

Car

eS

outh

and

W

est

YP

CA

£0

£1,000,000

£2,000,000

£3,000,000

£4,000,000

£5,000,000

£6,000,000

2006/07 2007/08 2008/09

Airedale

City Care

South and West

YPCA

There is roughly the same rate of increase in each of the 4 alliances. The total spend is highest in S&W, lowest in Airedale.


Spend on admitted patient care, by age.

£0

£1,000,000

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2006/07 2007/08 2008/09

0-9

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75+


b) Epilepsy - Health Care utilisation and outcomes

Overview of treatment optionsQuality and Outcomes FrameworkAED Prescribing – locally and comparative


Overview of epilepsy treatment options

Vagal Nerve Stumulator

Ketogenic diet

Surgery

AED

80% chance of class 1 outcome in suitable patients

50% reduction of seizures in one third to one half suitable patients


Epilepsy Health Care Utilisation and Outcomes of Care


Primary Care


QOF Performance Epilepsy – a regional overview (YHPHO)

• Relative to the national average, there were fewer patients age 18+ on drug treatment for epilepsy recorded in the last 15 months as being seizure free for 12 months in Bradford and Airedale, compared to England. This difference was not statistically significant.

• None of the other clinical quality indicators were significantly different to the national average.


NHS Bradford and Airedale QOF indicators. Performance and exceptions (07 08) EP6 Achievement. EP7 % Achievement

Airedale 96.4 94.4

City Care 92.1 89.1

S&W 96.7 95.5

YPCA 96.2 95.8

Independent 96.3 96.4

Epilepsy 6 – record of seizure controlMost patients have on the epilepsy register have a record of seizure frequency in the last 15months. A relatively small proportion (3.7%) were exception coded.

Epilepsy 7 – medication review involving patient and carer.Most patients on the epilepsy register have had a medication review in the last 15 months. A relatively small proportion (3.7%) were exception coded.


Epilepsy 8 – Seizure Control.

Airedale

City CareYCPA

S&W

Across the district, 71.2% of patients were seizure free.This is a mean across the district. There were wide variations across alliances and practices.The mean performance might mask true performance, once excepted patients are taken into account.

Working on an assumption that patients that were exception coded were not seizure free, approximately 50% of adult patients with epilepsy were seizure free,This proportion is consistent with national estimates.

NB this data is available at practice level, it should be used for targeting current and new investment to improve outcomes in those populations where performance is currently poorest.This is the group of practices where services and quality improvement needs to be targeted.


Variability in achievement by practice

Funnel Plot of Practice Level EP8 Achievement %

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% S

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2SD limits

3SD limits

Source: Enter Source Here

Practices falling outside 2SD from the mean might be considered legitimate targets for quality improvement.


Variability in achievement by alliance

Funnel Plot of Alliance Level EP8 Achievement %

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2SD limits

3SD limits

Source: Enter Source Here

City Care

S&WYPCAAiredale

Independent


Regional / N of England ComparisonFigure 8b: Funnel Plot of Percentage of Patients with Epilepsy who have been convulsion free for 12

months during April 2008-March 2009

Wakefield District

Sheffield

Rotherham

North Yorkshire & York

North Lincolnshire

North East Lincolnshire

Leeds

Kirklees

Hull Teaching

East Riding of Yorkshire

Doncaster

Calderdale

Bradford & Airedale

Barnsley

60

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64

66

68

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72

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80

0 500 1000 1500 2000 2500 3000 3500 4000 4500 5000

Number of epileptic patients

% e

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rge

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et

NoE PCTs

Mean

UCL

LCL

Four PCTs (North East Lincolnshire, Barnsley, Hull Teaching and Rotherham) have unusually low percentages of patients meeting the target (Epilepsy 8)12 given the number of patients they have and the performance of other PCTs within the North of England.

The average percentage of patients meeting the target (Epilepsy 8)12 in the North of England is 71.3%

Key messages.• For the population as a

whole, 70% of all epileptics could achieve full seizure control through AEDs.

• Currently approx 57% of ALL patients with epilepsy in NHSBA have seizure control

• Approximately 43% of adult patients with epilepsy were not seizure free in the last 12 months.

Performance and Exception coding. Epilepsy 8


Prescribing of Anti Epileptic Drugs (AEDs)


Spend on anti epileptic drugs (AED) is increasing rapidly.

Spend on Antiepileptic Drugs

£0.00

£500,000.00

£1,000,000.00

£1,500,000.00

£2,000,000.00

£2,500,000.00

£3,000,000.00

2006/2007 2007/2008 2008/2009

Year

Sp

end

Linear growth in spend on AED over last 3 years.

Legitimate question remains as to whether outcomes have improved in the same linear fashion.

This is to be addressed through an analysis of QOF data over the last 3 years for Ep 8.

Practice Name Practice Code

Total Items , Financial 2006/2007

Total Act Cost , Financial 2006/2007





ILKLEY & WHARFEDALE MEDICAL PRACTICE B83002 477 £14,001.27 706 £20,048.03 811 £22,675.07THORNBURY MEDICAL PRACTICE B83005 912 £15,906.10 1,049 £24,957.19 1,356 £35,339.76SILSDEN GROUP PRACTICE B83006 2,654 £63,730.37 2,700 £69,575.77 2,888 £71,567.99THE HEATON MEDICAL PRACTICE B83007 1,998 £24,125.01 1,808 £23,904.41 1,966 £27,817.00LINGHOUSE MEDICAL CENTRE B83008 1,835 £51,224.12 2,183 £63,563.84 2,226 £66,481.10SUNNYBANK MEDICAL CENTRE B83009 1,701 £43,022.11 1,824 £51,775.97 2,177 £55,660.63PARKLANDS MEDICAL PRACTICE B83010 2,143 £45,764.75 2,220 £55,881.28 2,314 £56,850.39WOODROYD CENTRE B83011 642 £24,391.95 825 £23,378.03 815 £23,575.35CARLTON MEDICAL PRACTICE B83012 921 £17,745.60 1,082 £21,157.85 1,402 £29,444.42

This data is available at this level, and can be split down into specific drug classes. We can see where the growth has come from.

Spend on AED is increasing Are QOF outcomes increasing concurrently? NoAED spend Includes pregabilin and gabapentin


QOF Epilepsy Achievement

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

80.00%

90.00%

100.00%

2006/7 2007/8 2008/09

There is a linear correlation between epilepsy register size and spend.

• The larger the practice register of epilepsy patients (EP8 Denominator), the more the spend on AED. Strong positive correlation

Spend and register size

y = 1189.9x + 6222.3

R2 = 0.8269

£-

£20,000

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0 20 40 60 80 100 120

Register size (EP 8 Numerator)

Pra

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D


There is no correlation between spend and seizure control.

• Spend (on AED) per epilepsy patient (EP8 denominator) ranges from £200 - £5000.

• With the exception of some outliers, the range is relatively tight.

• R2 = 0.049• Weak to no correlation between

spend and outcomes for epilepsy patients.

• Whilst larger register size is directly correlated with spend on AED, this does not translate into better outcomes. Practices that spend more do not necessarily get better outcomes in terms of seizure control

• Get rid line

Correlation between Spend on AED and Seizure Control

y = 23695x + 15653

R2 = 0.0492

£-

£20,000

£40,000

£60,000

£80,000

£100,000

£120,000

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%

Ep 8. Seizure control

Spen

d pe

r pra

ctic

e (£

)

spend on AED / epilepsy patient (Ep 8 Denominator)

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1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83


Regional comparisons in AED prescribing

See Addendum

Secondary care


IP Spend on Epilepsy08 09 - c2000 admits. ¾ non elective.


Elective Spells Cost LoS

2006/07 459 £602,708 767

2007/08 459 £633,650 739

2008/09 521 £701,654 852

2009/10 178 £212,826 153

Non Elective

2006/07 1135 £1,856,325 6090

2007/08 1189 £2,031,840 6143

2008/09 1487 £2,722,307 8308

2009/10 445 £858,604 2538

Economics of epilepsy


Economics of Epilepsy Care. o

Jackoby et al. 1998. Costing study. Regional Sample. 1000 people with epilepsy.• comprehensive case ascertainment. •There are some weaknesses of costing studies, that should be taken into consideration when interpreting.•Direct and indirect costs associated.


Extrapolated cost / patient / year. From Jackoby 1998

The largest single element of cost to the health service was the cost of inpatient episodes, which represented 58% of the total annual cost, followed by the drug costs, which accounted for 23%. The proportion of annual costs of hospital-based care (73% of the total) far exceeded those of community care, which constituted only 4% of the total annual cost to the health service.

2010 cost. Extrapolated forward from 1998 study

0 seizures in past year

< 1 seizure / month > 1 / month all pt notes

n= 377 204 204 785

hospital care 86 907 1683 715includes OP, IP, A&E, Ix, EEG, Bloods

community care 15 34 85 38Includes GP, PN, DN, HV, SN, Psychol, Psyciatric

drug costs 130 235 406 229NB significant change in AEDs since 1998

education 401 1255 2829 1254Includes Residential care, day care

Total estimated cost 632 2431 5004 2236 this assumes:3% inflation year on yearno change in costing infrastructure in hospital /community careno change in drug utilisation.thus view the 2009 estimated cost as a conservative effort.


Implications.The extrapolated findings of the Jackoby study should be interpreted with a high degree

of caution. Significant changes in service configuration, availability of AEDs, inflationary uplift was used – this doesn’t take into account any other inflationary factors.

There are, however, a number of important implications arising from the study – these are unchanged regardless of whether the costings still hold:

• Patients with frequent seizures, who represented one quarter of all patients, accounted for more than half (58%) of the total cost of epilepsy care in this population.

• Good seizure control may have important financial implications in addition to quality of life and other clinical outcomes. These results emphasize the importance of optimizing seizure control as a means of reducing the costs of epilepsy, not only to the person with the condition, but also to society

• Shifts to primary care should be carefully planned and appropriately resourced and backed with skills and infrastructure development.

• The findings demonstrate the relatively high financial costs of prescribing the newer AEDs rather than the older ones, emphasizing that the incremental benefits derived must be rigorously assessed.

• Considerable debate now surrounds the cost-effectiveness of the new medications, and the question of whether their additional prescription costs are offset by reductions in seizure frequency, reductions in service use, and improvements in functioning and quality of life has not yet been adequately answered


Epilepsy Deaths


Deaths from epilepsy- overview• For those diagnosed with epilepsy the SMR is in the region of 2 to 4 (death is 2 to

4 times more likely in any given time period compared to the general population) • In newly diagnosed epilepsy, death is generally due to underlying disease

(CVD/tumour). • In chronic epilepsy death is often classified as Sudden Unexpected Death in

Epilepsy (SUDEP) • For those with severe epilepsy the death rate is 1:200 for any given time period.• For patients with less severe epilepsy the death rate is 1:500 – 1:1,000.• In epileptic patients in remission from seizures the death rate is negligible

(background mortality rates).• SUDEP is main cause of excessive mortality in chronic epilepsy – the mortality rate

is 4.5 times higher than expected . Greater that half of excess morality in epilepsy is due to SUDEP (approximately 500 deaths/per annum in the UK). Young people with LD are at greatest risk, where death rate 16 times greater than expected


Approximately 10 people die FROM epilepsy in any given yearMortality from epilepsy (ICD9 345 adjusted, ICD10 G40-G41). DSR. Persons. 1993 - 2007

• The actual number of deaths in the district is small. Between 10 and 18 in most of the last 14 years.

• The directly standardised death rate from epilepsy is generally above the national, and regional average, and above that recorded in similar populations. However this is very unlikely to be statistically significant.

• The trend for the DSR mortality rate for the district is downward.

60% of deaths from epilepsy are SUDEP40% of deaths from epilepsy are thought to be avoidable.Epilepsy has a higher mortality rate than asthma.


Deaths are principally in older peopleAge Specific Death Rate / 100,000 . Epilepsy. 1993 - 2007 • There are unlikely to be

any statistically significant differences between death rate in Bradford and that recorded elsewhere


c) Parkinson's Disease - Health Care utilisation and outcomes


Overview of treatment options

• Early management– No ideal first choice. – Options include. Watchful waiting, oral dopamine

agonists, MAO-B inhibuitor, L-Dopa

• Later management– First choice: L-Dopa, with adjuvant (oral dopamine

agonist, MAO-B inhibitors, COMT inhibitor). – Second choice: Amandadine, Apomorphine,

modified levodopa, DBS


Total spend on PD Drugs is increasing.Total spend on drugs used in parkinsonism and related (BNF 4.9)

400000

450000

500000

550000

600000

650000

700000

750000

800000

850000

2006/07 2007/08 2008/09

1/3 pt not able to tolerate L-Dopa; and many of those gaining initial benefit will eventually deteriorate.

Significant side effects – 40-80% of patients

Practice level spend / 1000 registered pop >60yrs

B8

30

02

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67

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71

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00

Y0

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0

20000

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100000

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2006/2007

2007/2008

2008/2009

Variation in spend on PD drugs per 1000 registered patients > 65.

PD – inpatient spells (excl Parkinsoniasms)


Elective Spells Cost LoS

2006/07 376 £195,601 396

2007/08 359 £159,548 316

2008/09 526 £201,091 276

2009/10 129 £36,693 53

Non Elective

2006/07 1255 £716,200 3492

2007/08 1560 £964,482 4649

2008/09 1938 £893,747 3608

2009/10 831 £395,526 1759

OP Care and the split between OP and community care.

• Not possible to get a reliable estimate of the split between primary care for people with PD and outpatient care

• The OP coding does not permit this level of detail without specific audit.• Hospital OP load clearly does depend on local policy concerning follow up

and supervision; also on the availability of GPwSI to take on some of the routine work that would otherwise have been taken on by a neurologist

• Estimate that even if GP monitors mostly unaided, people will still have OP follow up 1 or 2 times per year

• Prim care – GP may have up to about 10 contacts per year; plus visits for prescriptions (1)

• A question of whether additional prescribing PD nurse would be benficial might be considered as a potential efficiency saver – thus saving OP Appts / care closer to home etc

• Current overview of drugs used in PD – chapter 4.9 of BNF• Role of geriatricians in PD care needs to be considered, as does the split

between geriatrician / neurol / GP / GPwSI. Further discussion of the care model


PD - Outcomes

• Typically, Parkinson's disease is slowly progressive, but progression is variable [de Lau and Breteler, 2006].

• Life expectancy is reduced: mortality for elderly people with Parkinson's disease is 2–5 times higher than for age-matched controls [AHRQ, 2003].

• The risk of dementia is 2–6 times higher in people with Parkinson's disease than in healthy controls [de Lau and Breteler, 2006]


Economics of PD


COST OF PD – Findley et al 2003

Age NHS cost SS CostCost of public services Private Cost

<65 3577 858 4435 5520

65 - 74 2973 2224 5198 6737

74 - 84 2959 3802 6762 8768

86+ 2780 4125 6905 13001

NK 5399 3742 9140 19385

All ages 3171 2854 6026 8339

H&Y Stage NHS cost SS CostCost of public services Private Cost

0&1 1941 1109 3049 4113

II 1996 1178 3174 4306

III 3600 2757 6358 8675

IV 5054 5522 10576 14118

V 5642 10133 15775 25410

NK 1373 3052 4425 8642

All Stages 3181 2836 6017 8344

Based on extrapolated findings of Findley et althis assumes: 3% inflation year on year no change in costing infrastructure in hospital /community care no change in drug utilisation. thus view the 2009 estimated cost as a conservative effort.

•NHS costs associated with approx 38% of total cost •social services associated with approx 34% of direct costs of care •Drug expenditure accounted for 24% of overall costs in <65s and 10% of overall cost in 85yr old + •a move from home to residential care was associated with an approximate 500% increase in cost


Main cost Drivers PD

• independant variables explained 50% of the cost:– gender – Barthel ADL index – H&Y stage – accommodation (home v LT care) visits by PD

Nurse


Conclusions and implications of Findley et al

• As per Jackoby study of epilepsy, ALL cost of illness studies should be interpreted with caution – especially when extrapolating forward the castings. There are generalisable points:

– costs of PD vary with age and disease severity – slowing progression is key aim from economic perspective, in addition

to QoL – optimising treatment prevent avoidable institutionalisation by

focusing care on the relevant sub group of PD patients most likely to be institutionalised

– optimal management of institutionalised patients - thus reducing cost of care.


Costs and economic evidence in PD

• Appendix G: Economic modelling for Parkinson’s disease nurse specialist care

• Appendix F: Economic modelling – Surgery• Appendix E: Economic modelling – dopamine

agonists• CG35


d) Multiple Sclerosis - Health Care utilisation and outcomes


Primary and community care

• Prim care – GP may have up to about 4-8 contacts per year; plus visits for prescriptions (1).

• A significant number of patients will have impairment that limits their mobility or / and activities of daily living.


IP careInpatients Multiple Sclerosis Fiscal Year Spells Diagnosis CodesCost LoS

2006/07 288 851 £477,049 2092

2007/08 301 969 £471,176 1487

2008/09 376 1478 £685,369 2269

2009/10 132 595 £218,298 545

Grand Total 1097 3893 £1,851,892 6393


0

1000

2000

3000

4000

5000

6000

7000

Elective 2006/07 2007/08 2008/09 NonElective

2006/07 2007/08 2008/09

Chart: Number of electiveand non-elective admissions3yr Data

e) Other Neurological conditions Health Care utilisation and

outcomes


• Wide range of other conditions are within the scope of neurological illness

• some of these conditions are individually rare – the number of cases is small - but require intense input of health and social care

• Some of these conditions are common, and require little care – mostly care can be managed in primary care.

• Data on health care utilisation for many of these conditions is sparse.


f) Programme Spend on patients with neurological illness

DH Programme Budget data.


Economic context and financial climate

• Whatever happens following this point, there is no funding for growth.

• Any service changes will be from within the current spend – either within the neurological illness Programme Budget Category, or from other areas.

• Thus the emphasis must be on efficiency, making savings on less ‘valuable’ to reinvest, and accounting for the zero growth whilst coping with rising need and demand.


Spend on ‘Neurological’ in context.33m on Neurological. £16m on Neurol, £16m on

‘chronic pain’


2006-07 2007-08 2008-09% change from

2007-08

01 Infectious Diseases 6,676 5,958 7,409 24%02 Cancers and Tumours 42,591 42,580 44,420 4%03 Disorders of Blood 5,194 6,296 9,334 48%04 Endocrine, Nutritional and Metabolic 25,081 23,582 26,647 13%05 Mental Health Disorders 81,687 94,097 100,121 6%06 Problems of Learning Disability 19,287 21,994 20,933 -5%07 Neurological 25,639 35,378 33,060 -7%08 Problems of Vision 13,486 18,461 22,116 20%09 Problems of Hearing 4,224 10,630 5,012 -53%10 Problems of Circulation 62,416 63,154 69,448 10%11 Problems of the Respiratory System 32,832 37,856 43,590 15%12 Dental Problems 30,645 41,414 40,448 -2%13 Problems of Gastro Intestinal System 36,813 44,113 41,182 -7%14 Problems of the Skin 22,069 20,792 18,398 -12%15 Problems of Musculo Skeletal System 20,861 26,670 29,811 12%16 Problems due to Trauma and Injuries 21,126 37,770 25,264 -33%17 Problems of Genito Urinary System 61,635 28,923 40,887 41%18 Maternity and Reproductive Health 32,060 38,576 34,841 -10%19 Conditions of Neonates 6,963 6,746 11,475 70%20 Adverse effects and poisoning 5,108 9,076 7,183 -21%21 Healthy Individuals 12,385 8,032 30,884 285%22 Social Care Needs 18,785 25,128 28,986 15%23 Other 103,483 104,822 126,856 21%All Total 691,046 752,048 818,305 9%

Programme Budgeting Category

Expenditure on own population (£000s)

Bradford and Airedale Teaching PCT

Spend on ‘Neurological’ in contextspend per 100,000 population. 61% in sec care.

39% in prim care


01 Infectious diseases 523,455 38 46% 602,445 141 54%02 Cancers and Tumours 2,021,328 13 25% 6,025,134 138 75%03 Disorders of Blood 106,650 100 9% 1,083,123 134 91%04 Endocrine, Nutritional and Metabolic problems3,608,036 4 81% 848,320 145 19%05 Mental Health Disorders 3,025,918 41 17% 14,755,855 80 83%06 Problems of Learning Disability 143,859 68 3% 4,012,409 88 97%07 Neurological 1,473,281 50 22% 5,212,199 53 78%07a Chronic Pain 150,359 62 5% 3,155,154 10 95%07x Neurological (Other) 1,322,922 46 39% 2,057,045 123 61%08 Problems of Vision 1,628,100 4 47% 1,860,527 88 53%09 Problems of Hearing 407,377 11 20% 1,601,404 4 80%10 Problems of circulation 4,942,472 24 41% 6,991,916 128 59%11 Problems of the respuratory system2,655,143 33 37% 4,498,611 87 63%12 Dental Problems 5,994,687 20 77% 1,831,432 38 23%13 Problems of The gastro intestinal system1,520,501 55 18% 6,815,655 33 82%14 Problems of the skin 1,644,252 6 42% 2,284,870 40 58%15 Problems of the Musculo skeletal system1,011,193 72 20% 4,028,711 140 80%16 Problems due to Trauma and Injuries753,623 40 11% 6,383,879 25 89%17 Problems of Genito Urinary system977,367 64 18% 4,488,293 133 82%18 Maternity and Reproductive Health749,844 35 10% 6,539,970 30 90%19 Conditions of neonates 557,848 5 44% 716,963 136 56%20 Adverse effects and poisoning 0 N/ A 0% 1,715,117 39 100%21 Healthy Individuals 1,429,201 75 94% 88,628 149 6%22 Social Care Needs 867,196 48 18% 3,881,312 24 82%23 Other 15,229,506 76 77% 4,579,000 92 23%All Total 51,270,838 45 36% 90,845,773 114 64%

NHSBAExpenditure £ per 100,000 population

Programme Budgeting CategoryPrimary care Secondary care

£31 / head on chronic pain. V high spender comparatively

£32 / head on ‘neurological’. Low spender comparatively.

Approx 60% of spend on this programme is in secondary careRecall that most care provided for people with neurolological illness is in primary care (much of which may be masked in the ‘other’ category (programme 23)

Growth in spend in NeurologicalProgramme 7 has grown significantly over the last 3 years for which data are available.

This graph shows growth in expenditure across all 23 programme areas in Bradford and Airedale.


How does spend on neurological illness compare to all other PCTs

Spend on the Neurological Programme (06 07) for all PCTs compared.In Rank Order

NHS B&A


Spend and outcomes. Non Elective Admissions. Average Non El Admits. Average spend

Bradford falls within the circle.SAR Non Elective Admissions and Programme Spend (£m / 100,000 pop)Back to contents Back to section head

Spend and outcomes – YLL epilepsy. Slightly above average YLL

Bradford falls within the circle.DSR YLL Mortality from Ep <75yrs. 2005 – 07 and Programme Spend (£m / 100,000 pop)Back to contents Back to section head

Spend AND outcomes (1)Lower spend. Better

outcomes.


Spend and outcomes in context, across all areas of health spend.

Higher Expenditure Lower Expenditure

Bet

ter

Ou

tco

me

Wo

rse

Ou

tco

me

Infectious Diseases

Cancers and Tumors

Blood Disorders

Endocrine, Nutritional & Metabolic Problems

Mental Health Disorders

Problems of Learning Disability

Neurological System Problems

Problems of Vision

Problems of Hearing

Circulatory System Problems

Problems of the Respiratory System

Dental Problems

Problems of the Gastro-Intestinal System

Problems of the Skin

Problems of the Musculo Skeletal System

Problems due to trauma and injuries

Genito Urinary System Disorders (Excludes Fertility)

Maternity & Fertility

Conditions of neonates

Adverse effects and poisoning

Healthy individuals

Social Care needs

Neurological Illness

The size of the blob reflects the relative amount of spend in that programme in BA tPCT (smaller blob = less spend). The position on the x-axis reflects how the spend in Bradford compares with our peers (PCTs in the same ONS cluster) and the y-axis how our outcomes compare with our peers.

Neurological illness is a mid sized programme in terms of spend – comparative to other programme areasSpend is average compared to other PCT areasOutcomes are better


5) Services in Bradford and Airedale

Overview of current service model. Generalist and in each of main disease areas

What are the priorities for service improvement and investment


a) Overview of current service model. Generalist and in each of

main disease areas

General Neurological Services

Medical - consultants•3 WTE Neurologist at BRI

• 1 locum Consultant (LTHT) running DMD clinics – once a month at BTHT•1 WTE Neurologist at AGH. Plans to recruit a second consultant.•0.5 WTE Rehab Consultant at AGH (only part of role covers Neurol rehab. Also sessions in Leeds and also covers stroke rehab in Airedale), also covers a wider catchment area – Craven and E Lancs.

GPSI services•Dr Andy Hansen•Dr Kay Scarpelo•Dr Estelle McFadden•Dr Daniel Harding•Dr David Cockshoot – Airedale There is a need to clarify the current and future provision for GPSI provision in the district.Model, priorities and capacity. Accreditation and supervision to be addressed.


Perceived priorities to address in generalist neurological care:

very little provision of Psych services • There is 1WTE working from Airedale on Neuro Psychology.• There is only 0.5WTE for BTHT and 0.5 WTE for Social Services – mainly in

community head injury team• epilepsy psych services have one person one day p/w working out of the

Woodroyd centre.• Not enough capacity to support patients – without consideration for carers.

Rehab• There is no Rehab Consultant at BTHFT.• Inequitable service when comparing with ANHST• There is no specialist Rehab Unit in a community setting to pick up ABIs etc after

discharge from Brain Injury Unit.• There is no early discharge team that can pick up Neuro conditions after admission

on to the acute ward at BRI. If appropriate the patients can be picked up by the PT and the OT in the neuro outreach team. Currently there is no maintenance rehab available in BTHFT.

• MS service does have specialist PT and OT input.• Airedale have patients in Rehab beds for a long length of time – this is costly and

there may be cheaper and more effective alternatives


Perceived priorities to address in generalist neurological care:

Therapy• Lack of Therapy services that are available for any length of time. • Physios work with patients as part of the Neurological Rehab Team – but this is for

around 6 weeks. The team receive approx 60+ referrals a month for stroke and neurology patients.

• Lack of continuity is a major concern for carers.• Lacking in OT capacity in Neuro Rehab – no spasticity service, no splinting service.

Service redesign and input from commissioners• Lack of commissioner capacity to lead all aspects of service redesign. • Input of commissioner to provider business planning. Esp when ongoing service

commisisoning implications


Parkinson's Specific Services

• One part time Parkinsons nurse (0.64 WTE)– employed by BACHS

• The therapists in the neuro outreach team run a PD at Horton Park once per week for 6 sessions. This is a mixture of rehab, exercise, education and advice. Principally for newly diagnosed PD patients


MS Specific Services• 1WTE MS Nurse– employed by BACHS. (Millennium business

Park). • 1WTE Specialist Rehab/MS Nurse, also deals with stroke and

general neurology as part of rehab role – BACHS (Millennium business Park). • 40% of these two posts are funded by NYY PCT• Provides MS service for Airedale and Carven district

• One Specialist MS Nurse employed by BTHT • 1WTE S Asian support worker (BTHT) – pump prime funding

from MS society• 1 WTE MS Physio that was pump primed by the MS Society 1,

BTHFT funding• 1 WTE MS OT that is currently being pump primed by the MS

Society, funding will be picked up by BTHFT.


Epilepsy Specific ServicesSpecialist Nursing• Two 0.6WTE Epilepsy Nursing staff - work under the GPSI service

employed by BACHS. • ? Inequitable level of provision across our two main providers; reference

to cover for input into maternity services. • Paediatric Epilepsy Nurse at SLH - ?WTE• 0.2 WTE Psycotherapy Services for epilepsy patients.

Transition services• Transition clinics are considered a specific development to be considered

– an opportunity to review diagnosis, investigations, management and deal with specific teenage issues. . BTHFT have tried previously to set one up, but failed due to lack of space at BHT


MND Specific Services

• There is no specialist nursing staff for MND


ABI / TBI Specific Services• There is no specialist nursing staff for ABI.• One issue that was picked up during this process was that ABI

patients are inappropriately placed orthopaedic wards. This seems to be a function of the pathway, in that ABI patient is admitted, an assessment is made as to the patients suitability for surgery (Leeds Neurosurg) or conservative care. Surgery candidates most often stay on a neurology ward, conservative care patients most often stay on an orthopaedic ward.

• There may be a case for reviewing the pathway of care for ABI / TBI patients as inpatients and outpatients.

• Specifically – care navigation was seen as an important priority to pick up


Hospices, day care and residential care specialised for neuro illness

• 2 hospices – cancer and non cancer• Day places limited• Neuro residential services are limited in some vol and independent

sector homes across WY. Generic...not specific.• Day care and respite places in short supply....

– Marie Curie, Leeds Rd Hosp, Maudsley St, Bfd. Provides high quality Palliative care and Day therapy services.

– St Ives Nursing Home, Provides Palliative and end of life care - with rehabilitation care. No qualified Therapists

– The Links Nursing Home – esp patients with challenging behaviour, mainly mental health.

– Howgate House?


Rehab services• Out of District Placements prove to be very expensive for the PCT, are

usually at least 6 months and that is only for a period of assessment' prior to what they suggest for Rehab. The placement is often a long way from home for families to visit.

• There is a case for local service development. This has been explored in the past but not taken forward for various reasons. This discussion should be re-commenced urgently.– Staveley Birklees provides quiet a few bed spaces for Leeds Patients – the

rehab unit was originally funded by one of the 4 PCTs – but I believe that Bradford LA decided not to take any beds because of the costs. There were talks a number of years ago around the possibility of Bradford commissioning a couple of beds at Stavely/ Birklees this wasn't taken forward. It is an expensive option. Stavely / Birklees has a limited role for speecialised neuro rehab.

– Daniel Yorath – Leeds Rehab spec unit – principally behavioural/ cognitive Rehab. There is NO Physio input there

– Manorlands Hospice. Provides end of life care traditionally, considering developing services to provide rehabilitation care.


b) Priorities for service improvement and investment

As set against the National Service Framework Quality Standards.


National Service Framework for Long Term Conditions. DH. 2005

• Wide number of recommendations and standards of care

• Generic to all neurological conditions.• Designed as a generic template for

chronic disease management more generally.

• One of the ‘lower profile’ NSFs.• As a district we have not assessed

progress towards. This is increasingly being seen (by DH) as a priority.

• There is little (if any) comparative benchmarking between different districts


Results of visioning day• A wide selection of stakeholders representing the interests of

patients with neurological illness met in summer 2009.• This multi disciplinary group systematically considered each

of the 11 Quality Standards within the National Service Framework for people with Long Term Neurological conditions.

• This group came to a collective understanding of:• What the standards ‘mean’ locally;• Current good practice and areas for improvement• This exercise provided a wealth of local intelligence and views

on how services should be improved locally. • It is not possible to report within this document on all of this

in detail. This should be taken forward methodically by the Long Term Neurological Conditions steering group.


Assessment of the main issues to address in each of the standards set

out in the NSF

Based on feedback from the visioning day


A person centred service

QR1 – Patient Centred Service. People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Views of stakeholders on most important issues to address1. Key worker contact2. Managed Transition3. Meeting needs of family and social care4. Better information


Prompt diagnosis, appropriate referral and treatment

QR2 – Early recognition and prompt diagnosis & treatment.People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible.

Views of stakeholders on most important issues to address1. Ambulance protocols 2. capacity in imaging and diagnostics – extended hours; sweating assets / More

varied access to route imaging 3. Extend electronic booking beyond CPFA to tests with directly bookable imaging

via access to radiology systems4. Lean the pathways , benchmark against others and make appropriate increases to

the workforce5. Improved specialist and specialist nurse availability for wide range of neuro

disorders / One stop clinic – Specialist Nurses6. Quick access to medical assessment / faster diagnosis7. Set guidelines all to be aware primary and secondary teams8. GPSI Capacity – early Dx / Tx9. Education – public, patients, staff10. Access to psychological support


Prompt diagnosis, appropriate referral and treatment

QR3 – Emergency & Quality ManagementPeople needing hospital admission for a neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with the appropriate neurological and resuscitation skills and facilities.

Views of stakeholders on most important issues to addressStandards for hospitals providing emergency care. Clear pathways - All acute assessment units to provide same diagnostic and therapeutic standard.Avoiding inappropriate admissions. Education and audit?Real time medication / info about patients admitted. Joining up IT systems so secondary care clinicians get a better picture about patients.Continuity of care between hospital and community - ?same team. Liaison team across health and social careSeamless – keyworker – personalised care24 hour emergency access including care provider e.g. system used by palliative care


Rehabilitation, adjustment and social integration

QR4 – Early and Specialist Rehabilitation.People with long-term neurological conditions who would benefit from rehabilitation are to receive timely, ongoing, high quality rehabilitation services in hospital or other specialist settings to meet their continuing and changing needs. When ready, they receive the help they need to return home for ongoing community rehabilitation and support ('home' in this context means the place where the individual chooses to live, which may be their own accommodation or may be a residential or care home).

Views of stakeholders on most important issues to address1. Champions for neuro rehab.2. Access – lack of some services (neuropyschology, rehab medicine); no rehab unit

in the right setting.3. proper decision making process about access to independent specialist rehab –

not confuse this with NHS continuing health care decision4. pathways allow for patients from all areas serviced by BTHT and ANHST and that

B&A patients seen elsewhere are also covered5. Access equity audit6. Review of out of area rehab. The business case for local NHS rehab. 7. Early rehab needs to be focussed on social needs asap / Early intervention by

social care pro-active and in reachingBack to contents Back to section head


QR5 – Community Rehabilitation & SupportPeople with long-term neurological conditions living at home are to have ongoing access to a comprehensive range of rehabilitation, advice and support, to meet their continuing and changing needs, to increase their independence and autonomy and help them to live as they wish. 'Home' in this context means the place where the individual chooses to live, which may be their own accommodation or may be a residential or care home

Views of stakeholders on most important issues to address1. Rehab services - including psychology (ongoing rehab and day case

facilities) and Bradford and Airedale appropriate to age and condition (42)

2. - Timely access and good links with primary care and between statutory and voluntary agencies and residential/nursing homes (12)

3. - Training and Education for carers and staff and all others involved (e.g. employers ) public awareness (18)

4. - On going and appropriate support throughout patients journey e.g. keyworker assigned to patient (3)



QR6 – Vocational RehabilitationPeople with long-term neurological conditions are to have access to appropriate vocational assessment, rehabilitation and ongoing support, to enable them to find, regain or remain in work and access other occupational and educational opportunities.

Views of stakeholders on most important issues to address1. - Clear pathways - navigator, incorporating patient view, clear access into

specialist services, patient urgent access2. - Training – access routes, skills right person, right time, right place, GP updates3. Resources - adequate funding, using exisintg £ spend on out of area better.4. MDT Links/ Communications – incorporating OT, nurseries and schools into

planning.5. Links between specialist teams and vocational services (7)6. Support – patients and employers.


Lifelong care and support for people with longterm neurological conditions, families and carers

QR7 – Providing Equipment & AccommodationPeople with long-term neurological conditions are to receive timely, appropriate assistive technology/ equipment and adaptations to accommodation to support them to live independently, help them with their care, maintain their health and improve their quality of life.

Views of stakeholders on most important issues to address1. Joint Strategy (9) - - Have a clear integrated strategy for assistive tech (inc equipment and

adaptations) across health, housing and social care. Comprehensive review in this area. Develop Rehab unit for patients/carers.

2. Funding (4) - - Pooled funding across health and social care.3. Integration (12) - Integration across health and social care services to simplify the system

for people. - Development of independent sector.4. Physio/OT Services/Training Programme (18) - Investment in OT Capacity; increase skill

mix in MDT to take on duties.5. Specialist Equipment (10) - Access to a range of standard and specialist equipment, hire

options, better knowledge of where to access equipment in the workplace.



QR8 – Personal Care & SupportHealth and social care services work together to provide care and support to enable people with long-term neurological conditions achieve maximum choice about living independently at home.

Views of stakeholders on most important issues to address1. Specified team with strong leadership. (7) - central referral point. Trusting inter-agency

professionals assessments avoiding duplication of effort. But has to be specialist involvement to avoid missing the “specialist health care elements”.

2. Integrated health and social and voluntary practice. (30) - Within this MDT BUT a key worker – co-ordinator of personalised care plan. Don’t forget the patient and their need assessment.

3. Education and information for all (10) - (not just the workforce to include patients and carers) – supporting to know what your options are. Raising profiles of teams already out there. GP’s – Health and social care understanding each other to work seamlessly rather than working against – avoiding the ”them and us” syndrome.

4. Investment –making the most of current monies. (22). Recognising where money needs to be spent (OT/ Adaptations; Respite; All therapy services; Housing; Supported accommodation; Nursing – specialist and generic; Telecare)



QR9 – Pallative Care (Gold Standards Framework) The GSF improves the supportive palliative care of people towards the end of their life, and is used by primary health care teams to optimise the care provided for people living in the community, so that most care is delivered at home or to people attending GP surgeries. It is now being piloted in care homes and will be piloted in community hospitals in the future. It is being used increasingly with people who have long-term conditions

Views of stakeholders on most important issues to address1. Getting timing right when to refer/ information about services. (9). When to

refer training. 2. Adopting and further developing the use of GS7 and LCP (1)3. Specialist nurses (3) – capacity, specific expertise with neuro problems. Early

symptom control. Improving generalist skill in palliative care4. IT – Enabling shared information between services and professionals (4)5. Support for carers including respite (7)



QR10 – Supporting families & Carers.Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.

Views of stakeholders on most important issues to address1. INFORMATION AND COMMUNICATIONS (17). Carer information is not the same as

patient information2. TRAINING AND WORKFORCE DEVELOPMENT (5). Training and support to PCT/ Social

Services staff from carers and voluntary agencies3. KEYWORKER (TRANSITIONS) (7). Key worker for carer in their own right4. SPECIALIST MDT ASSESSMENTS (9). MDT – needs to include social and health care and

follow into community – regular reviews5. APPROPRIATE RESPITE OPTIONS (14). Respite care is a carer concern but it a patient issue

and paying for it should not come through carer monies. Use of individual budgets



QR11 -Caring for people with neurological conditions during admission to hospital or other health and social care settings.People with long-term neurological conditions are to have their specific neurological needs met while receiving care for other reasons in any health or social care setting

Views of stakeholders on most important issues to address1. INFRASTRUCTURE – supporting IT, Budgets, Identifying (Real) need. (3)2. DEVELOPED CARE PATHWAY(S) – Cross Bradford and Airedale (MIGHT DIFFER)

(11)3. ROBUST PERSONALISED CARE PLAN (2)4. MDT’S – WORKFORCE (18)5. TRAINING AND EDUCATION PROGRAMME (2)


Top 9 Priorities for the district arising from the visioning day.

- Rehab services - including psychology (ongoing rehab and day case facilities) and Bradford and Airedale appropriate to age and condition (42)

- Access to specialist rehab units so that people spend most of the time in the most appropriate setting access and equity audit (35)

- Integrated health and social and voluntary practice. (30) Within this MDT BUT a key worker – co-ordinator of personalised care plan. Don’t forget the patient and their need assessment.

- Investment – making the most of current monies. (22) Working smarter not harder

- Multi- Agency Working and Integration (20)

- Physio/OT Services/Training Programme (18) - Investment in O/T Capacity - increase skill mix in MDT to take on duties.

- Training and Education for carers and staff and all others involved (e.g. employers ) public awareness (18)

- “Champions” for rehabilitation in acute and community settings (health and social care/ LA at executive/ director level) (18)

- MDT’S – WORKFORCE (18)

Full set of themes emerging in the notes page


6) Guidelines and best practice in treatment of neurological illness

a) National Service Frameworkb) NHS Scotlandc) Association of British Neurologistsd) Disease specific Clinical

GuidelinesBack to contents Back to section head

• Much work has already been done that considers appropriate service models:

a) National Service Framework – 2005b) Scott-Moncrieff – NHS Scotland 2008c) Association of British Neurologists -1997


a) National Service Framework


National Service Framework for Long Term Conditions. DH. 2005

• Wide number of recommendations and standards of care

• Generic to all neurological conditions.• Designed as a generic template for chronic

disease management more generally.• One of the ‘lower profile’ NSFs.• As a district we have not assessed

progress towards. This is increasingly being seen (by DH) as a priority.

• There is little (if any) comparative benchmarking between different districts


b) Scott-Moncrieff – NHS Scotland 2008


NHS Scotland – 2008 – Review of services for people with neurological conditions

• NHS Scotland Review of services available to those with neurological conditions

• Neuro services are fragmented and peicemeal.

• Service provision found to vary significantly between health boards (more so than might be explained by differences in need).


A number of consistent themes emerged from this report

Issue Points highlighted

Strategic planning for Neurological Services

None of the health boards questioned was able to give a complete picture of neuro services – highlighted the need for a strategic overviewMany contributors to this work highlighted the lack of strategic planning – few able to map out all services, few able to set out a clear vision

Recruitment Difficulties in recruitment to key clinical posts – medical / therapy and nursing

Specialist nurse provision

Wide variation in availability (and utilisation / value attached to) GPSIs and specialist nursing teams. Number of WTE varies across different health boards.Some concerns expressed that employment of specialist nursing actually increases overall workload (work expands to fill the available capacity / case finding / meeting unmet need / transferring work around the system – that which would have (in the absence of Sp Nursing) have been undertaken by GPs as part of routine work / encouraging re referrals back to neurologists (given the expert knowledge of the Sp nurses – that GPs might note have – of available services)

Follow-up Appointments

HC profs concerned that meeting the initial waiting time target for new referrals skews the delivery of the service towards this – at the expense of ability to plan work load for appropriate follow up, at clinically appropriate intervals. A > focus on follow up is required in neuro compared to many other specialties.

Rehabilitation Marked inequity in what is available and where. Even in specialist / tertiary centres. AHP / medical and nursing capacity and issue here.



Joined up working / Social Work provision

Very limited evidence of any (clinical or other) networks or joint management protocols established between different providers in and out of the NHS, SSD, VCS etc. The main thing linking different services was the patient themselves.

Taking the service to the patientsInformation provision

Wide number of VCS agencies involved in this area. Some disease specific groups, some more generic. Many with different roles. Little consistency or planning about what is available to whom / where / what is offered

Fragmented service

Logistical implications of any potential initiatives

Transitional services

Disparities between adult / paed (esp physio). Sometimes significant loss of service as one moves to adult services

Acute admissions Majority of acute admissions are unlikely to be assessed by a neurologist. Will be on a gen med ward



Palliative care No if IP beds (excluding stroke) is very limited, variable. Lack of rehabilitation services, respite beds and pall care beds. Under prioritisation of EoL care for this group of patients....resulted in some patients (esp 16 – 65 yrs) being unsuitably placed.

Funding imbalance

Low priority given to the development of these services – insufficient attention and resources / lost out to higher political priorities.


c) Association of British Neurologists

Recommendations for neurology and neurosurgery service configuration


Neurology in the UK. Towards 2000 and beyond. ABN 1997• Set out the recommendations of

the Association of British Neurologists

• Published in 2000.• Highlighted a recommended

number of consultants per population – one neurologist per 100,000.

• Made recommendations on the style and configuration of neurology services


Broad recommendations of the ABN 1997

1. The number of Consultant Neurologists in the United Kingdom needs to increase to provide adequate services for those patients with neurological disorders.

2. A minimum of one whole time, equivalent Neurologist per 100,000 of the population will be required to provide a satisfactory service.

3. Consultant Neurologists should be equally distributed throughout the United Kingdom, so as to provide an overall adequate level of care in all areas

4. This can be best achieved by a Neurology Network, in which Neurologists work in District General Hospitals, in Neurology Centres, in Neurology and Neurosurgery Centres and in supraregional specialist centres. Individual Neurologists may be based in any of these, but will be affiliated to more than one.

5. The Neurology Network in any one region will be tailored to local geography, to the organisation of District General Hospitals and to the location of the Neurology and Neurosurgery Centre.

Commissioners may not have systematically considered theserecommendations. The NHS has changed significantly since 1997.


ABN have recommended that neurology care is in the context of a network

• To meet patient need, there is a requirement for:1. A general neurological diagnostic service2. Services for acute neurological problems3. Access to a sophisticated network of sub-

specialist diagnostic and treatment services.4. Services that provide long term care and, when

necessary, rehabilitation.ABN 1997


A network of Neurology Services will enable patients to achieve the right level of service at the right time

• The Neurology Network set out by ABN is illustrated here

• In a given geographical area there are four levels at which secondary care neurology services are given,

1. DGH Neurology Unit2. Neurology Centre - a specialised

neurology unit without neurosurgery3. Neurology and Neurosurgery Centre -

similar to the current regional and sub-regional Neuroscience Centres

4. Supra-regional and National specialist services - these include the National Hospital for Neurology and Neurosurgery in London and the various specialist services for specific neurological disorders that are located in different parts of the country.

• Clinical and organisational networks should reflect and be alligned to this.


d) Disease specific Clinical Guidelines

• Epilepsy• MS• PD


NICE CG 20 - EpilepsyAs a district, we consider we are partially compliant with

the key priorities for implementation:Diagnosis• recent onset suspected seizure should be seen urgently

seizure type(s) and epilepsy syndrome, aetiology and co-morbidity.

Management• Full participation of patient, carer or family.• comprehensive care plan • he AED strategy should be individualised Review and referral• Regular structured review - yearly.• Access to: written and visual information; counselling

services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; referral to tertiary services, including surgery if appropriate.

• Tertiary referral if seizures are not controlled and/or there is diagnostic uncertainty

Special considerations for women of childbearing potential• Women with epilepsy be given accurate information and

counselling


Recommendations of NICE CG08 - MSKey priorities for implementation

1. Specialised services - Specialist neurological and neurological rehabilitation services should be available to every person with MS, when they need them.

2. Rapid diagnosis - An individual who is suspected of having multiple sclerosis should be referred to a specialist neurology service, and seen rapidly.

3. Seamless services- Every health commissioning organisation should ensure that all organisations in a local health area agree and publish protocols for sharing and transferring responsibility for and information about people with MS.

4. A responsive service- All services and service personnel within the healthcare sector should recognise – and respond to – the varying and unique needs and expectations of each person with MS. The person with MS should be involved actively in all decisions and actions.

5. Sensitive but thorough problem assessment - Health service professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a ‘hidden’ problem contributing to their clinical situation.

6. Self-referral after discharge- Every person with MS who has been seen by a specialist neurological or neurological rehabilitation service should be informed about how to make contact with the service when he or she is no longer under regular treatment or review.


National Audit of MS Care• A wide range of data assessed on services

for people with MS.• results of the first full national audit that

measures the quality of NHS services for people with multiple sclerosis against the seven standards derived from the NICE national clinical guideline.

• Recommendations to NHS organisations.• Data collected from 1300 service users,

127 NHS trusts, 140 Commissioning organisations and 7 performance management organisations.


Findings • Access to neurological rehabilitation is

unacceptably low, with very limited commissioning and only slightly less limited actual provision

• Access to specialist neurological services is generally good

• Time between initial referral and final diagnosis remains long

• Patient involvement both in the planning of individual personal care and in service provision and development is very poor

• Assessments are perceived by people with MS generally to be carried out in a sensitive and thorough manner

• Integration of care between health and social services is felt to be poor


Recommendations


CG 35 - PD


a) Data, epidemiology, service utilisation and outcome.b) District priorities for changec) Service configuration and model of cared) Commissioning and planning framework

7) Summary and key issues to address


Covering statement

• There is much we don’t know• There is a skew in this work towards what there is

‘data’ that is readily available. This is important, and we need to take care not to only consider ‘what can be measured’ – for example ABI is little mentioned in this work – an acknowledged weakness.

• There is much soft intelligence• There is significant change within the planning

system and across the NHS currently – this will affect next steps

Context• People with neurological illness have a disproportionately

high burden of sensory loss, cognition and communication problems (carers burden and other issues to do with social and emotional well being of patients)

• Neurosciences has a relatively low profile when compared with CV, cancer etc

• This low profile is not helped by disparate nature of diseases and relatively disparate (if any planning arrangements across all neurological care)


Characterisation of Neurological conditions.

• It is expected that number of people with neuro conditions will grow significantly over next two decades.

• Ageing, population growth are major factors in this.• Medical staff often have conflicting views on what services counted as

neurology. Most frequently this definition includes:– Brain injury / Ep / MND– MS– PD / Stroke

• agreement of this list is not universal. many other diseases and conditions also contribute to the workload of neurology


a) Data, epidemiology, service utilisation and outcome

Currently available data will only tell us a part of the picture. A more sophisticated understanding of NEED will help ensure resources are targeted most appropriately.

There are SIGNIFICANT uncertainties in current need, and how this will change in the future. These will not be resolved without detailed epidemiological study.


Bradford compared to National Model

Bradford and Airedale. 502k p. 2009 JSNABradford numbers from System 1 are roughly consistent with modelled estimates for epilepsy and MND. However, System 1 reported Parkinson's Disease and MS are both considerably lower than the modelled estimate. This may be due to problems with the model or the fact that the population age structure (and risk profile) for Bradford is somewhat different to the national picture (see earlier slides).

ConditionNational

Prevalence*

Expected Number*

This will calculate automatically

Known Number

In Audit? Use Drop down List Notes

Aphasia 0.370% 2009 -Acquired Brain Injury 0.183% 994 -Acquired Spinal Cord Injury 0.070% 380 -Ataxia 0.010% 54 -Cerebral Palsy 0.170% 923 -Charcot-Marie Tooth Disease 0.038% 206 -Dementia & Early Onset Dementia 1.180% 6407 -Dystonia 0.062% 337 -Encephalitis 0.396% 2150 -Epilepsy 0.770% 4181 5933 -Essential Tremor 0.500% 2715 -Huntington's Disease 0.016% 87 -Hydrocephalus 0.010% 54 -Migraine 13.220% 71781 -Motor Neurone Disease 0.008% 43 47 -Multiple Sclerosis 0.180% 977 614 -Muscular Dystrophy 0.050% 271 -Myasthenia Gravis 0.016% 87 -Narcolepsy 0.160% 869 -Neurofibromatosis 0.039% 212 -Parkinson's Disease 0.198% 1075 547 -Post Polio Syndrome 0.396% 2150 -Progressive Supranuclear Palsy 0.016% 87 -Spina Bifida 0.023% 125 -Stroke 0.495% 2688 -Syringomyelia 0.008% 43 -Tourette's Syndrome 0.050% 271 -Transverse Myelitis 0.001% 5 -Trigeminal neuralgia 0 -Tuberous Sclerosis 0.013% 71 -Others: 212 -

Local Prevalence of some conditions – taken from data in System 1 practices

Disease 95%ci (-) DSR 95%ci (+) Prevalence (numbers) Prevalence % (crude) Crude rate per 100,000MS 100 109 118 614 0.11 113.1

PKD 70 76 84 547 0.10 100.7MND 6 8 11 47 0.01 8.7

Epilepsy 745 769 793 5933 1.09 1092.7

Bradford Calcluations of Neurepidemiology From SystemOne Data

System One is probably our best source of information, given the high number of GP practices now on the system (85%) and the fact that it is typically preferable to use observed rather than modelled data in studies where the local demographics are different to those found nationally (as in Bradford).

Data on epidemiology and health need should be treated with caution

• LARGE discrepancies in estimates.• No up to date epidemiological studies in many areas within

neurology.• Estimates are old, and subject to misinterpretation• We should use epidemiological studies where we have them

(eg MS)• There is much that cannot easily be measured.• Good data on the incidence, prevalence and care of ABI / TBI

is a priority to address• System 1 is about the best mechanism for surveillance we

have. Despite it’s imperfections it is thought to give reasonable estimates of prevalence.






•For MND numbers are small so caution – forecasting indicates an increase in prevalence of 3 new cases by 2015, 5 new cases by 2020 and 11 additional cases by 2030

Takes into account estimated prevalent rate and population growthDoes not take in to account death rate – thus assumption is made that death rate = incident rate (therefore steady state – and pop growth is main driver of growth). Difficult to get death rate specifically for people with certain neuro illnesses – a combination of cause specific (how many die FROM PD in any given year) and general AACM (how many p die WITH PD in any given year) – technically difficult to do this without v detailed analysis (more detailed than can be done in routine work)

NB Caution re interpretation. Estimate based on S1

Thinking epidemiologically and demographically – the population of people with neurological conditions WILL grow

We know relatively little about neurology care in primary care and social care

• There is much routinely available data• There is a need for activity data related to the

management of LTNCs in the community including social services and in palliative care to complement the HES data which exists for secondary and tertiary services.

• There is a need for data relating the access and uptake of rehabilitation services.

• Stakeholders should identify specific questions.


Using data for targeting resources

• QOF data on epilepsy gives a reasonable perspective on adult epilepsy care and identifies where to target.

• Does the current service model have the ability to do this.

• This is harder to apply in other LT Neuro areas – less readily available data / no good (agreed) quality indicators.


% prevalence of epilepsy. Practice level. QOF 07 08

0.00

0.20

0.40

0.60

0.80

1.00

1.20

1.40

1.60

%prevalence (NBdenominatorerror 20+pop)

AED and Cost Effectiveness of newer AEDs

• Careful consideration given to the cost effectiveness of newer AED

• Spend on AED is increasing linearly.• If QOF outcomes (albeit they are a crude measure) is not

increasing linearly, there needs to be a discussion about whether there is a case for releasing some of the incremental investment we make into newer AED into more clinically and cost effective forms of care.

• Consider further modelling of the epidemiology and economics. Consideration of patient and population impact of shifting investment from newer AEDs to other treatments.


Other recommendations for using epidemiology, economics and service utilisation data.

• Consideration of modelling the impact of:– Avoidable morbidity and cost with better seizure

control - epilepsy – Avoidable cost with better PD control, slow rate of

progression. Needs better understanding of distribution of PD by stage of progression

– Ditto MS, PD, MDN, ABI, TBI


More inpatient and outpatient spend.

OP Spend over time


£0

£100,000

£200,000

£300,000

£400,000

£500,000

£600,000

£700,000

£800,000

£900,000

£1,000,000

2006/07 2007/08 2008/09

Hospital OP load clearly does depend on local policy concerning follow up and supervision; also on the availability of GPwSI to take on some of the routine work that would otherwise have been taken on by a neurologistAssume that each patient is seen twice following diagnosis (once to convey the diagnosis, once to answer any specific questions); then followed up once or twice per year

All Admissions. Primary diagnosis.

0

500000

1000000

1500000

2000000

2500000

3000000

3500000

4000000

2006/07 2007/08 2008/09

Multiple Sclerosis

Parkinsons Disease

Parkinsons Disease (inc SPism)

Epilepsy

MND

Admissions for epilepsy appear to be increasing. Admissions for other main disease groups appear to be relatively stable


Spend by admission type – emergency admissions are increasing markedly

• Elective admissions are relatively stable. Emergency admissions appear to be increasing markedly. Whether this is as a result of changes in baseline need, pathways or service configurations or other reasons is unknown.

0

2000000

4000000

6000000

8000000

10000000

12000000

14000000

16000000

2006/07 2007/08 2008/09

Elective Admissions

Emergency Admissions

Other non-elective


Spend on ‘Neurological’ in contextspend per 100,000 population. 61% in sec care.

39% in prim care


01 Infectious diseases 523,455 38 46% 602,445 141 54%02 Cancers and Tumours 2,021,328 13 25% 6,025,134 138 75%03 Disorders of Blood 106,650 100 9% 1,083,123 134 91%04 Endocrine, Nutritional and Metabolic problems3,608,036 4 81% 848,320 145 19%05 Mental Health Disorders 3,025,918 41 17% 14,755,855 80 83%06 Problems of Learning Disability 143,859 68 3% 4,012,409 88 97%07 Neurological 1,473,281 50 22% 5,212,199 53 78%07a Chronic Pain 150,359 62 5% 3,155,154 10 95%07x Neurological (Other) 1,322,922 46 39% 2,057,045 123 61%08 Problems of Vision 1,628,100 4 47% 1,860,527 88 53%09 Problems of Hearing 407,377 11 20% 1,601,404 4 80%10 Problems of circulation 4,942,472 24 41% 6,991,916 128 59%11 Problems of the respuratory system2,655,143 33 37% 4,498,611 87 63%12 Dental Problems 5,994,687 20 77% 1,831,432 38 23%13 Problems of The gastro intestinal system1,520,501 55 18% 6,815,655 33 82%14 Problems of the skin 1,644,252 6 42% 2,284,870 40 58%15 Problems of the Musculo skeletal system1,011,193 72 20% 4,028,711 140 80%16 Problems due to Trauma and Injuries753,623 40 11% 6,383,879 25 89%17 Problems of Genito Urinary system977,367 64 18% 4,488,293 133 82%18 Maternity and Reproductive Health749,844 35 10% 6,539,970 30 90%19 Conditions of neonates 557,848 5 44% 716,963 136 56%20 Adverse effects and poisoning 0 N/ A 0% 1,715,117 39 100%21 Healthy Individuals 1,429,201 75 94% 88,628 149 6%22 Social Care Needs 867,196 48 18% 3,881,312 24 82%23 Other 15,229,506 76 77% 4,579,000 92 23%All Total 51,270,838 45 36% 90,845,773 114 64%

NHSBAExpenditure £ per 100,000 population

Programme Budgeting CategoryPrimary care Secondary care

£31 / capita on chronic pain. V high spender comparatively

£32 / capita on ‘neurological’. Low spender comparatively.

Approx 60% of spend on this programme is in secondary careRecall that most care provided for people with neurolological illness is in primary care (much of which may be masked in the ‘other’ category (programme 23)

b) District priorities for change


The economic climate is all pervasive

• There is no new money. There may be less money.• We can be as innovative as we wish. But it needs to

be within the current envelope!• Clinicians and expert stakeholders must advise on

where the required efficiency can be found• Marginal analysis – dealing with a frozen budget

envelope – collective consideration of what stays and what goes is critical.


Implementing the results of the ‘visioning day’

• The issues that emerged from the visioning day represent a significant wealth of local intelligence.

• A number of priorities for local service development were put forward by stakeholders.

• These should be discussed, and a plan for how they are progressed agreed through the LTNC Steering Group

• The LTNC Steering Group should also systematically consider all of the feedback received and consider how services might be improved.


6 district wide priorities emerged1. Multi Disciplinary Team working (score 118)– cutting down the barriers between health, social and

voluntary sector department to ensure Patients and Carers have the most appropriate care at the right time, the right place and at the right stage of the condition. Working with a navigator to direct patients and carers to the most appropriate service to meet their individual needs.

2. Consultant Network across the Bradford and Airedale Health Economy, feeding into a Neurological GPSI service that is supported both Inreach and outreach by a community nursing/therapy/social services team.

3. Rehabilitation (Score 77) – There are 3 Quality Requirements that fall under the umbrella of rehabilitation. More neurological specialist therapist, neuropsychology services and training required, assistive technology (which would fall under the self care strategy) clear pathways and a navigator. Better access to equipment is also stated with a Navigator being fundamental in pin pointing what is and what could be made available. Neuro Rehabilitation Consultant would also be invaluable at BTHT mirroring AGH adding to the Consultant Network.

4. Education (Score 69) – This is applies to Health professionals from primary care through to Secondary care from patients and carers to voluntary sector and Social care. It based around what is available, what is appropriate for the patients and families, but can only be completed once the MDT is holistic and consistent across the health economy. That should be the “first fix” and education rolled out and based around that team.

5. Key Worker (Score 57) – This sits in my opinion within the MDT but scored enough points to be placed within the top 5 highest scores. This and the MDT total equate to 175 – this can not be ignored and paramount within the potential re-design of current services and any potential new investment in Neurological services.

6. Pathways (Score 44) – Pathway redesign to ensure that all stakeholders know what services are where, how to access them and what is available. This would require clinical input and would sit within the re-design team.


Top 9 Priorities for the district arising from the visioning day.

- Rehab services - including psychology (ongoing rehab and day case facilities) and Bradford and Airedale appropriate to age and condition (42)

- Access to specialist rehab units so that people spend most of the time in the most appropriate setting access and equity audit (35)

- Integrated health and social and voluntary practice. (30) Within this MDT BUT a key worker – co-ordinator of personalised care plan. Don’t forget the patient and their need assessment.

- Investment – making the most of current monies. (22) Working smarter not harder

- Multi- Agency Working and Integration (20)

- Physio/OT Services/Training Programme (18) - Investment in O/T Capacity - increase skill mix in MDT to take on duties.

- Training and Education for carers and staff and all others involved (e.g. employers ) public awareness (18)

- “Champions” for rehabilitation in acute and community settings (health and social care/ LA at executive/ director level) (18)

- MDT’S – WORKFORCE (18)

Full set of themes emerging in the notes page


Care closer to home is seen a priority for change

• Supported discharge• Self care• Care that is historically provided in hospital provided

through general practice or at home• But:

– Achieving a shift from primary to secondary may be a good thing, but it may not be cost neutral.

– Shifting from acute to community, from a pure economic perspective, may not be cost neutral.

– Resources required to achieve the shift to community-based services are new resources and resources currently used for hospital OP / IP services are old resources.


c) Service configuration, and model of care


The strategy and model of care that supports it must cover both ends, and everything in the middle.


Planning of services and configuration of services should be along care pathways

• Use Map of Medicine unless there is a good reason why this is not appropriate; of there isnt an appropriate MoM pathway.

• Localising MoM where appropriate• Do the current pathways we have within

Neurology track closely to Map of Medicine, or equivalent. How do we measure up


Links to other pathways might be better

• There are key links and relationships that need to be addressed to meet the NSF, both for expediency and also in developing sustainability by embedding systems to include standards of service appropriate for neurological conditions in other mainstream strategies and policies. Any future commissioning arrangements would need to ensure that these are adequately addressed.

• These are:– End of Life pathways– Transitions from children’s services– Pain management– Mental health and Learning Disability strategies – Stroke strategy

• It is also essential, when creating a specific initiative that it is not exclusive. The mainstream generic activities of care planning , care navigation and self care programmes, led regionally and /or locally, do need to be fully inclusive at an operational level and all LTCs be embedded in generic workstreams to enable a systemic change that is more sustainable for the individuals concerned and to achieve the organisational impact over time.


Consider whether there a need for a neurology network?

• Is there a need for a managed clinical network within neurology across both main provider trusts?

• Integrated Neuro service that spans BTHT and AGH• Networks between providers – multi disciplinary etc• Peer support, CPD, governance. • Links to neurosurgery in Leeds • Many be dependant on second neuro at AGH.• May also be dependant on building up capacity for nurse

consultants / other nursing support


Careful consideration needed to the balance between specialised v general nursing support.

• Nursing and therapy support is needed• There seems to be an imbalance between different disease groups• There may be some duplication. This reflects the patchy historic pattern of

development of these services.• Equity of provision across the district is a very important consideration• Is there a need for consideration to be given to the balance between specialised

(eg disease specific) v generalised (all neurological illnesses) nursing and therapy support services, particularly in the community.

• Disease specific vs generic nursing and therapy support services• There is no ‘best practice template’ to follow.• Consideration given to whether there is equitable provision of specialised services

across each of the disease areas…..seems like heavier investment into MS than say PD

• Is there overinvestment in one disease area….at expense of another• Is there duplication of services in specialised nursing• No specialised nursing for MND / ABI – yet these groups of patients (although

small in number) use significantly greater health care.


Equitability between different areas needs consideration

• Nursing and therapy• Medical and non medical• Geography and disease focused. • Generic v specialist• MS services weighted heavily with staff and resources – as a result of

historic funding and or pump priming. Consideration of how should this be considered in relation to other services

• Consideration of investment into PD service. Nurse prescriber – would it be invest to save – as save o/pt appoints at BTHT/AGH

• Generic Neuro Nurse role – consideration of if and how this be funded?• GPSI Neuro service incorporating and supporting a Headache service

providing care across the whole of the Bradford and Airedale health economy – provided by through General Practice

Therapies

• Ongoing work to link therapy and rehabilitation services to Consultant and Specialist Nursing services to provide a holistic range of services

• Requires support and advise from the LTnC Steering group to ensure services and pathways are linked

Rehab medicine needs a review, Rehab services in Bradford and Airedale

• Consistent and prominent theme• Making the business case for improvements to rehab services

is critical• This might include:

– the equitability of service model across the whole patch. – Out of area placements– Neuro rehab vs general rehab– The links with social care– Inpatient v outpatient rehab– Self care.– Pooling resources currently in use into a single more specialised unit.

• Rehab for ABI seen as a particularly important priority


Are we delivering services within current clinical guidelines?

• Little knowledge of whether all services fully implement NICE CG.

• Should we conduct an audit of current care model for some of the major neurological illnesses against NICE CG (or equivalent)

• This is a significant, and complex piece of work (with opportunity costs) – given the scope and complexity of the different CG for neurological illnesses.

• Before we take this further, it should be carefully considered.


Should we develop a tiered model of service.

• Common parlance in ‘disease management’

• Design services around the tiers.

• Defining what is in each ‘tier’ is critical, as is defining thresholds for transfer between different tiers

Level 2 –Community Multi Disciplinary Team.

Clinical Lead, Nursing, Navigator, Key Workers, Therapies, Psychology, Social Care service and Voluntary sector. Feeding into EOL/Palliative care.

Level 1-

Primary Care

GP support/care closer to home/self care/telemedicine.

Level 4

Secondary care Consultant Network

Level 3 –

Neurological GPSI Service

Long Term Neurological Conditions Vision


Self care in ongoing therapy vs maintenance therapySelf management – signposting people for advice.,

d) Commissioning and planning framework.


Commissioning and planning framework will change, but does need to be clarified

• Commissioner and providers jointly consider the configuration of neurological services within hospital and whether they are appropriately networked

• Consideration of what is best planned at what level. Not everything can be planned at the level of the GP, GP Commissioning cluster, or PCT

• There remain significant uncertainties in how the planning framework will evolve.


Collaboration potential within planning arrangements.


National Specialised Regional Specialized Sub Regional Collaborative Individual PCT Joint PCT / LA

Emergency care Acute care, including critical care, surgery & observation

national spinal, some neurosurgery

neurosurgery, neuro critical care

polytrauma, head injury observation

Diagnostic services Interdisciplinary 24hour rehab

potential for collaborative procurement arrangements for very complex cases and/or those requiring very specialist Provision

OP short-term medical follow-up Disease management

all can be dependent on level of speciality, service provision will be interdependent and may require a stepped care model or a defined care Pathway

Specialist symptom management (medical/MDT)

dependent on level of speciality, required volume etc.

dependent on level of speciality, required volume etc.

Carer support & services Advocacy Care planning, planned review & case management

Palliative care Interdisciplinary community reintegration Interdisciplinary ongoing enablement Vocational advice & rehab

potential for joint commissioning with DWP



Supported living options Respite care Equipment & smart technologies

Maggie Campbell, NHS Sheffield.

Payment mechanisms and structures might achieve more for less.

• Should consider:– Telephone care / e consultations (and the

payment framework to back this up)– Is there a case for piloting the ‘Year of Care’

model in some areas. Would need a detailed costing study.


8 Selected References


Selected references1. Jader L. An Overview of Neurological Disorders in Wales. Neuroepidemiology 2007; 28:65–782. MacDonald BK, Cockerell OC, Sander JW, Shorvon SD. The incidence and lifetime prevalence of

neurological disorders in a prospective community-based study in the UK. Brain 2000; 123:665-76. NICE CG 20 ref 13

3. Engel J, Jr. A proposed diagnostic scheme for people with epileptic seizures and with epilepsy: Report of the ILAE task force on classification and terminology. Epilepsia 2001; 42:796-803. . NICE CG 20 Ref 1

4. Sander JW,.Shorvon SD. Epidemiology of the epilepsies. Journal of Neurology, Neurosurgery, and Psychiatry 1996; 61:433-43. . NICE CG 20 Ref 2

5. Duncan JS, Shorvon SD, Fish DR. Clinical epilepsy. New York: Churchill Livingstone, 1995. . NICE CG 20 Ref 3 6. Clinical Standards Advisory Group. Services for Patients with Epilepsy. 2000. London, Department of

Health. . NICE CG 20 Ref 11 7. Duncan JS, Shorvon SD, Fish DR. Clinical epilepsy. New York: Churchill Livingstone, 1995. . NICE CG 20 Ref 3 8. Lhatoo SD, Johnson AL, Goodridge DM, MacDonald BK, Sander JW, Shorvon SD. Mortality in epilepsy in

the first 11 to 14 years after diagnosis: multivariate analysis of a long-term, prospective, population-based cohort. Annals of Neurology 2001;49:336- 44. NICE CG 20 Ref 14

9. Shackleton DP, Westendorp RG, Trenite DG, Vandenbroucke JP. Mortality in patients with epilepsy: 40 years of follow up in a Dutch cohort study. Journal of Neurology, Neurosurgery & Psychiatry 1999; 66:636-40. . NICE CG 20 Ref 15

10. Nashef L, Fish DR, Sander JW, Shorvon SD. Incidence of sudden unexpected death in an adult outpatient cohort with epilepsy at a tertiary referral centre. J.Neurol.Neurosurg.Psychiatry 1995; 58:462-4 NICE CG20 Ref 16

11. Yorkshire and Humber Long term Conditions: Neurological Conditions. Informing Commissioning: A Proposal. Barr L. 2009


long term neurological conditions strategic health needs assessment [email protected]...

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