Long Term Neurological
conditions
Strategic Health Needs Assessment
Greg.fell@bradford.nhs.uk
Christopher.gibbons@bradford.nhs.uk
Structure and contents
1
2
3
Executive summary
Introduction
Prevalence and incidence
a) Demographics
b) Current numbers of patients with selected
neurological illnesses
Epilepsy
PD
MS
MND
5
a)
b)
6
Health care utilisaiton and health
outcomes and spending on health care
a) Health care utilisation for neuro illness
generally
b) Epilepsy
c) PD
d) MS
e) Others
f) Programme Spend on Neurological Illness
and economics.
7
National Service Framework
NHS Scotland
Association of British Neurologists
Disease specific Clinical Guidelines
(Epilepsy, MS, PD)
Summary and key issues to address
a)
b)
c)
d)
8
Overview of current service model.
Generalist and in each of main disease
areas
What are the priorities for service
improvement and investment
Guidelines and best practice in
treatment of neurological illness
a)
b)
c)
d)
c) Projected growth in prevalence
4
Services in Bradford and Airedale
Data, epidemiology, service utilisation
and outcome.
District priorities for change
Service configuration and model of care
Commissioning and planning
framework
Selected references
1
Summary and key messages
See Section at end
To add when agreed through LTNC
Steering Group
2
Introduction
Scope of neurological illness, and description of
some specific illnesses
What 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)
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
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.
Back to contents
Back to section head
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.
Back to contents
Back to section head
Chapter VI of ICD10 - Diseases of the
nervous system (G00-G99)
G00-G09
Inflammatory diseases of the central nervous system
G10-G13
Systemic atrophies primarily affecting the central
nervous system
Extrapyramidal and movement disorders
Other degenerative diseases of the nervous system
Demyelinating diseases of the central nervous system
G20-G26
G30-G32
G35-G37
G40-G47
G50-G59
G60-G64
G70-G73
G80-G83
G90-G99
Back to contents
Episodic and paroxysmal disorders
Nerve, nerve root and plexus disorders
Polyneuropathies and other disorders of the peripheral
nervous system
Diseases of myoneural junction and muscle
Cerebral palsy and other paralytic syndromes
Other disorders of the nervous system
Back to section head
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
Back to contents
Back to section head
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
Back to contents
Back to section head
Specific neurological diseases
Back to contents
Back to section head
Epilepsy - Overview
Background notes below in notes
page
Back to contents
Back to section head
Multiple Sclerosis - Overview
Background notes below in notes
page
Back to contents
Back to section head
Parkinson's Disease Overview
Background notes below in notes
page
Back to contents
Back to section head
3
Prevalence and Incidence
a) Demographics, demographics and risk factors
b) Current numbers of patients with selected neurological
illnesses
c) Projected growth
Back to contents
Back to section head
a) Populations, demographics
and risk factors
Deprivation
Age
Ethnic diversity
Back to contents
Back to section head
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
Back to contents
Back to section head
Prevalence estimate 1 – DH (Neuro Numbers
/ NICE)
DH estimated the incident and
prevalent rate of Neurological
Disorders when compiling the
NSF.
Back to contents
Back to section head
Estimate 2. Jader L. 2007. Approx 5.8% of populations
of Wales are affected by neurological disorders
Back to contents
Back to section head
Bradford compared to National Model
Condition
Aphasia
Acquired Brain Injury
Acquired Spinal Cord Injury
Ataxia
Cerebral Palsy
Charcot-Marie Tooth Disease
Dementia & Early Onset Dementia
Dystonia
Encephalitis
Epilepsy
Essential Tremor
Huntington's Disease
Hydrocephalus
Migraine
Motor Neurone Disease
Multiple Sclerosis
Muscular Dystrophy
Myasthenia Gravis
Narcolepsy
Neurofibromatosis
Parkinson's Disease
Post Polio Syndrome
Progressive Supranuclear Palsy
Spina Bifida
Stroke
Syringomyelia
Tourette's Syndrome
Transverse Myelitis
Trigeminal neuralgia
Tuberous Sclerosis
Others:
National
Prevalence*
0.370%
0.183%
0.070%
0.010%
0.170%
0.038%
1.180%
0.062%
0.396%
0.770%
0.500%
0.016%
0.010%
13.220%
0.008%
0.180%
0.050%
0.016%
0.160%
0.039%
0.198%
0.396%
0.016%
0.023%
0.495%
0.008%
0.050%
0.001%
0.013%
Expected
Number*
This will calculate
automatically
2009
994
380
54
923
206
6407
337
2150
4181
2715
87
54
71781
43
977
271
87
869
212
1075
2150
87
125
2688
43
271
5
0
71
212
Known
Number
In Audit?
Use Drop
down List
5933
47
614
547
-
Notes
Data taken from
a range of
sources – Jader,
NSF / Neuro
Numbers, NGO
websites
Bradford and Airedale. 502k p. 2009 JSNA
Bradford 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).
Local Prevalence of some conditions –
taken from data in System 1 practices
Bradford Calcluations of Neurepidemiology From SystemOne Data
Disease
MS
PKD
MND
Epilepsy
95%ci (-)
100
70
6
745
DSR
109
76
8
769
95%ci (+)
118
84
11
793
Prevalence (numbers) Prevalence % (crude) Crude rate per 100,000
614
0.11
113.1
547
0.10
100.7
47
0.01
8.7
5933
1.09
1092.7
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
Back to contents
Back to section head
Example of dangers of inappropriate use of
epidemiological data from elsewhere
Area
MS
PKD
MND
Epilepsy
Bradford Calculations from Sys1
LCI
DSR
UCI
100
109
118
70
76
84
6
8
11
745
769
793
Area
MS
PKD
MND
Epilepsy
Cockerell's Calculations
LCI
DSR
UCI
nk
110
nk
160
180
200
4.6
5.8
7
nk
nk
nk
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.
Back to contents
Back to section head
Epilepsy Prevalence
Back to contents
Back to section head
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 5001000/1000,000 (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.
Back to contents
Back to section head
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
Back to contents
Back to section head
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
Back to contents
Back to section head
Wide range of prevalence of
epilepsy at Practice level
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,
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.
Back to contents
•Age structure
•Random chance
Back to section head
System One data On Epilepsy in
Bradford
Epilepsy in Bradford
95%ci (-)
DSR
95%ci (+)
Prevalence (numbers)
Prevalence % (crude)
Crude rate per 100,000
745.5
768.8
792.6
5933.0
1.1
1092.7
A prevalence forecasting model
suggests the following:
By 2015: 307 extra cases of Epi
By 2020: 564 extra cases of Epi
By 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
Back to contents
Back to section head
Range of prevalence estimates
Local
• 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.
Back to contents
Back to section head
System One data On PD in Bradford
PKD in Bradford
95%ci (-)
DSR
95%ci (+)
Prevalence (numbers)
Prevalence % (crude)
Crude rate per 100,000
69.6
76.4
83.7
547.0
0.1
100.7
A prevalence forecasting model
suggests the following:
By 2015: 23 extra cases of PKD
By 2020: 51 extra cases of PKD
By 2030: 106 extra cases of PKD
MS prevalence
Back to contents
Back to section head
System One data On MS in Bradford
MS in Bradford
95%ci (-)
DSR
95%ci (+)
Prevalence (numbers)
Prevalence % (crude)
Crude rate per 100,000
99.8
108.6
118.0
614.0
0.1
113.1
A prevalence forecasting model
suggests the following:
By 2015: 23 extra cases of MS
By 2020: 51 extra cases of MS
By 2030: 106 extra cases of MS
Range of prevalence estimates
Local
• 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 data
National
• 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.
Back to contents
Back to section head
MND
Back to contents
Back to section head
Range of prevalence estimates
MS in Bradford
95%ci (-)
DSR
95%ci (+)
Prevalence (numbers)
Prevalence % (crude)
Crude rate per 100,000
5.8
8.0
10.7
47.0
0.0
8.7
•
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
Back to contents
Back to section head
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)
Back to contents
Projected growth in
prevalence
Back to section head
A prevalence forecasting model
suggests the following:
By 2015: 307 extra cases of Epi
By 2020: 564 extra cases of Epi
By 2030: 1364 extra cases of Epi
NB Caution re interpretation.
Estimate based on S1
By 2015: 23 extra cases of PKD
By 2020: 51 extra cases of PKD
By 2030: 106 extra cases of PKD
By 2015: 23 extra cases of MS
By 2020: 51 extra cases of MS
By 2030: 106 extra cases of MS
•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 growth
Does 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)
4
Health care utilisation and health
outcomes and spending on health care.
Health care utilisation for neuro illness generally
Epilepsy
PD
MS
Others
Programme Spend on Neurological Illness and
economics.
Back to contents
Back to section head
a) Health care utilisation for
neurological illness generally
Back to contents
Back to section head
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.
Back to contents
Back to section head
A&E use for people with
neurological conditions
Little if any data!
Back to contents
Back to section head
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
Back to contents
Back to section head
Outpatients and inpatients
Back to contents
Back to section head
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.
Back to contents
Back to section head
Outpatient Utilisation for
Neurological Conditions
Back to contents
Back to section head
Referrals to neuro outpatients. NHS
Bradford and Airedale. 06/07 – 08/09
Spend on MS
Fiscal Year
2006/07
2007/08
2008/09
Cost
last 3 years
Spend on PKD
Fiscal Year
2006/07
2007/08
2008/09
Fiscal Year
2006/07
2007/08
2008/09
last 3 years
Fiscal Year
2006/07
Consultations
222
240
341
129657
890
44637
47922
60868
Consultations
250
314
391
181059
1125
704193
771416
925916
Consultations
4541
5109
6198
2737802
18124
Cost
last 3 years
Spend on OP
36519
31883
47535
Cost
Referral Initiator Cost
Consultations
Consultant
26479.1392
180
Non Consultant
321700.7737
2053
Not Recorded
19607.5764
206
Unknown
336405.9902
2102
2006/07 Total
704193.4795
4541
2007/08
Consultant
8289.4165
72
Non Consultant
738481.7487
4741
Not Recorded
4022.7462
47
Unknown
20622.2623
249
2007/08 Total
771416.1737
5109
2008/09
Consultant
9442.8922
101
Non Consultant
858927.6883
5682
Not Recorded
8867.3362
26
Unknown
48677.6293
389
2008/09 Total
925915.546
6198
2009/10
Consultant
2835.1564
31
yr not complete Non Consultant
302575.332
2047
Not Recorded
2122.5089
9
Unknown
28744.0462
189
2009/10 Total
336277.0435
2276
Grand Total
2737802.243
18124
Back to contents
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.
Back to section head
OP Spend over time
£1,000,000
£900,000
£800,000
£700,000
£600,000
£500,000
£400,000
£300,000
£200,000
£100,000
£0
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
neurologist
Assume 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
Back to contents
Back to section head
IP Episodes for neurological
conditions
Unless otherwise specified, y axis on
graphs is spend.
Back to contents
Back to section head
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.
Back to contents
Back to section head
All admissions. Primary HRG.
A - Nervous System
6000000
B - Eyes and Periorbita
C - Mouth Head Neck and Ears
5000000
D - Respiratory System
E - Cardiac Surgery and Primary Cardiac
Condition
F - Digestive System
4000000
G - Hepatobiliary and Pancreatic System
A - Nervous System
H - Musculoskeletal System
D - Respiratory System
W - Immunology, Infectious Diseases and other contacts with health services
F - Digestive System
L - Urinary Tract and Male Reproductive System
P - Diseases of Childhood and Neonates
E - Cardiac Surgery and Primary Cardiac Condition
C - Mouth Head Neck and Ears
Q - Vascular System
2006/07
2006/07
2006/07
2006/07
2006/07
2006/07
2006/07
2006/07
2006/07
2006/07
4,567,454
1,604,519
1,056,410
1,002,813
827,610
755,132
641,678
583,319
312,322
232,201
A - Nervous System
H - Musculoskeletal System
W - Immunology, Infectious Diseases and other contacts with health services
D - Respiratory System
L - Urinary Tract and Male Reproductive System
F - Digestive System
E - Cardiac Surgery and Primary Cardiac Condition
P - Diseases of Childhood and Neonates
Q - Vascular System
C - Mouth Head Neck and Ears
2007/08
2007/08
2007/08
2007/08
2007/08
2007/08
2007/08
2007/08
2007/08
2007/08
4,824,427
1,721,441
1,225,564
1,127,437
952,012
943,413
689,480
554,452
289,254
286,810
A - Nervous System
H - Musculoskeletal System
D - Respiratory System
W - Immunology, Infectious Diseases and other contacts with health services
L - Urinary Tract and Male Reproductive System
F - Digestive System
E - Cardiac Surgery and Primary Cardiac Condition
P - Diseases of Childhood and Neonates
C - Mouth Head Neck and Ears
J - Skin, Breast and Burns
2008/09
2008/09
2008/09
2008/09
2008/09
2008/09
2008/09
2008/09
2008/09
2008/09
5,694,558
2,080,953
1,814,837
1,664,086
1,188,576
1,110,183
864,435
768,124
361,814
348,139
H - Musculoskeletal System
3000000
J - Skin, Breast and Burns
K - Endocrine and Metabolic System
L - Urinary Tract and Male Reproductive System
2000000
M - Female Reproductive System and Assisted
Reproduction
N - Obstetrics
1000000
P - Diseases of Childhood and Neonates
Q - Vascular System
0
2006/07
2007/08
2008/09
S - Haematology, Chemotherapy, Radiotherapy
and Specialist Palliative Care
V - Multiple Trauma, Emergency and Urgent
Care and Rehabilitation
W - Immunology, Infectious Diseases and other
contacts with health services
Most people admitted with a diagnosis of neurological illness are recorded
under a ‘nervous system’ HRG.
Y axis is spend.
Back to contents
Back to section head
All Admissions. Primary diagnosis.
4000000
3500000
3000000
2500000
Multiple Sclerosis
Parkinsons Disease
2000000
Parkinsons Disease (inc SPism)
1500000
Epilepsy
1000000
MND
500000
0
2006/07
2007/08
2008/09
Admissions for epilepsy appear to be increasing. Admissions for other
main disease groups appear to be relatively stable
Back to contents
Back to section head
Admission for neurological problems. By
Type of admission, and main diseases.
Fiscal Year Spells
2006/07
5895
2007/08
6097
2008/09
7379
2009/10
2407
Grand Total 21778
2006/07
1223
2007/08
1212
2008/09
1493
2009/10
513
Grand Total 4441
2006/07
4436
2007/08
4687
2008/09
5632
2009/10
1829
Grand Total 16584
2006/07
236
2007/08
198
2008/09
254
2009/10
65
Grand Total 753
Cost
12337566.1
13459182.22
17150527.5
5471047.213
48418323.02
1568406.28
1737178.349
2001248.876
708799.86
6015633.365
9825251.004
11023866.86
14177846.99
4588887.943
39615852.79
943908.8149
698137.01
971431.6342
173359.41
2786836.869
LoS
49628
51219
55075
17415
173337
2160
4266
2848
1024
10298
44096
44436
48851
15725
153108
3372
2517
3376
666
9931
Inpatients Parkinsons Disease
372
1631 911801.7
3888
2007/08
422
1919
1124029
4965
2008/09
446
2464
1094838
3884
2009/10
166
1406
960 432219.1
1812
3562888
14549
6974
Cost
Diagnosis Codes
Fiscal Year Spells
LoS
2006/07
375
1638 918548.3
3895
2007/08
428
1946
1137732
5043
2008/09
456
2527
1125771
3970
2009/10
167
Grand Total
Inpatients Multiple Sclerosis
LoS
2006/07
Grand Total
Inpatients Parkinsons Disease inc SPism
Cost
Diagnosis Codes
Fiscal Year Spells
1426
967 435539.1
1840
3617590
14748
7078
Cost
Diagnosis Codes
Fiscal Year Spells
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
1851892
6393
Grand Total
1097
3893
Inpatients Epilepsy
LoS
Cost
Diagnosis Codes
Fiscal Year Spells
6857
6357 2459033
1594
2006/07
6882
6714 2665491
1648
2007/08
9160
9483 3423961
2008
2008/09
2691
3046 1071430
623
2009/10
25590
25600 9619915
5873
Grand Total
Inpatients MND
LoS
Cost
Diagnosis Codes
Fiscal Year Spells
98 89230.27
36
2006/07
102 46606.73
25
2007/08
209 86865.33
43
2008/09
55 20051.7
10
2009/10
242754
464
114
Grand Total
290
114
288
85
777
All neurological
by main disease group
Further work needs to be done on the medical / surgical split.
Back to contents
Back to section head
Spend by admission type – emergency
admissions are increasing markedly
16000000
14000000
12000000
10000000
Elective Admissions
Emergency Admissions
Other non-elective
8000000
6000000
4000000
2000000
0
2006/07
2007/08
2008/09
• 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.
Back to contents
Back to section head
Airedale
Non Elec Spend on neurological illness.
By PBC Alliance.
Fiscal Year
2006/07
2007/08
2008/09
2009/10
SpellsDiagnosis Codes Cost
766
2525
£1,698,897
915
3811
£1,858,200
1042
4541
£2,631,105
382
1617
£976,411
LoS
9203
11652
11466
4339
£6,000,000
City Care
£5,000,000
Fiscal Year
2006/07
2007/08
2008/09
2009/10
SpellsDiagnosis Codes Cost
1038
3933
£2,222,538
1001
3941
£2,325,124
1226
6475
£2,994,611
378
1967
£885,910
LoS
9505
7513
9180
2718
£4,000,000
Airedale
City Care
South and
West
Fiscal Year
2006/07
2007/08
2008/09
2009/10
SpellsDiagnosis Codes Cost
1562
6359
£3,786,729
1664
7025
£4,206,045
2045
10977
£5,254,910
643
3645
£1,545,196
LoS
15198
14759
16939
4685
YPCA
£3,000,000
Fiscal Year
2006/07
2007/08
2008/09
2009/10
SpellsDiagnosis Codes Cost
1162
4671
£2,716,514
1120
4629
£2,871,774
1366
7461
£3,730,381
434
2471
£1,209,944
LoS
11985
11064
12647
4230
South and West
YPCA
£2,000,000
£1,000,000
£0
2006/07
2007/08
2008/09
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.
Back to contents
Back to section head
Spend on admitted patient care, by
age.
£9,000,000
£8,000,000
£7,000,000
£6,000,000
0-9
10-19
20-29
30-39
40-49
50-59
60-69
70-75
75+
£5,000,000
£4,000,000
£3,000,000
£2,000,000
£1,000,000
£0
2006/07
Back to contents
2007/08
2008/09
Back to section head
b) Epilepsy - Health Care
utilisation and outcomes
Overview of treatment options
Quality and Outcomes Framework
AED Prescribing – locally and comparative
Back to contents
Back to section head
Overview of epilepsy treatment
options
AED
Ketogenic
diet
Surgery
Vagal Nerve
Stumulator
80% chance of
class 1 outcome in
suitable patients
Back to contents
50% reduction of
seizures in one
third to one half
suitable patients
Back to section head
Epilepsy Health Care Utilisation
and Outcomes of Care
Back to contents
Back to section head
Primary Care
Back to contents
Back to section head
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.
Back to contents
Back to section head
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 control
Most 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.
Back to contents
Back to section head
Epilepsy 8 – Seizure Control.
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.
Airedale
YCPA
City Care
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.
Back to contents
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.
Back to section head
Variability in achievement by practice
Funnel Plot of Practice Level EP8 Achievement %
120
% Successful EP8 Achievement
100
80
Data
Average
2SD limits
60
3SD limits
40
Practices falling outside 2SD from the mean
might be considered legitimate targets for
quality improvement.
20
0
0
20
40
60
80
100
120
140
Total Cases
Source: Enter Source Here
Back to contents
Back to section head
Variability in achievement by alliance
Funnel Plot of Alliance Level EP8 Achievement %
100
90
% Successful EP8 Achievement
80
70
Data
60
Average
2SD limits
50
3SD limits
40
City Care
30
Independent
20
Airedale
YPCA
S&W
10
0
0
200
400
600
800
1000
1200
1400
Total Cases
Source: Enter Source Here
Back to contents
Back to section head
Regional / N of England Comparison
Figure 8b: Funnel Plot of Percentage of Patients with Epilepsy who have been convulsion free for 12
months during April 2008-March 2009
80
78
North Yorkshire & York
East Riding of Yorkshire
76
% epilepsy 8 target met
74
North Lincolnshire
Doncaster
Leeds
Bradford & Airedale
72
NoE PCTs
Wakefield District
Kirklees
Mean
70
Sheffield
Calderdale
UCL
LCL
68
Barnsley
North East Lincolnshire
66
Rotherham
Hull Teaching
64
62
60
0
500
1000
1500
2000
2500
3000
Number of epileptic patients
3500
4000
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.
4500
5000
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.
Back to contents
Performance and Exception
coding. Epilepsy 8
Back to section head
Prescribing of Anti Epileptic
Drugs (AEDs)
Back to contents
Back to section head
Spend on anti epileptic drugs (AED) is
increasing rapidly.
Spend on AED is increasing
Are QOF outcomes increasing concurrently? No
AED spend Includes pregabilin and gabapentin
Linear growth in spend on AED
over last 3 years.
Spend on Antiepileptic Drugs
£3,000,000.00
Legitimate question remains as to
whether outcomes have improved
in the same linear fashion.
£2,500,000.00
Spend
£2,000,000.00
£1,500,000.00
This is to be addressed through an
analysis of QOF data over the last
3 years for Ep 8.
£1,000,000.00
£500,000.00
£0.00
2006/2007
2007/2008
2008/2009
Year
Practice Name
Practice
Code
ILKLEY & WHARFEDALE MEDICAL PRACTICE
THORNBURY MEDICAL PRACTICE
SILSDEN GROUP PRACTICE
THE HEATON MEDICAL PRACTICE
LINGHOUSE MEDICAL CENTRE
SUNNYBANK MEDICAL CENTRE
PARKLANDS MEDICAL PRACTICE
WOODROYD CENTRE
CARLTON MEDICAL PRACTICE
B83002
B83005
B83006
B83007
B83008
B83009
B83010
B83011
B83012
Back to contents
Total Items , Total Act
Total Items ,
Financial
Cost ,
Financial
2006/2007
Financial
2007/2008
2006/2007
477
£14,001.27
706
912
£15,906.10
1,049
2,654
£63,730.37
2,700
1,998
£24,125.01
1,808
1,835
£51,224.12
2,183
1,701
£43,022.11
1,824
2,143
£45,764.75
2,220
642
£24,391.95
825
921
£17,745.60
1,082
Total Act
Total Items ,
Cost ,
Financial
Financial
2008/2009
2007/2008
£20,048.03
811
£24,957.19
1,356
£69,575.77
2,888
£23,904.41
1,966
£63,563.84
2,226
£51,775.97
2,177
£55,881.28
2,314
£23,378.03
815
£21,157.85
1,402
Total Act
Cost ,
Financial
2008/2009
£22,675.07
£35,339.76
£71,567.99
£27,817.00
£66,481.10
£55,660.63
£56,850.39
£23,575.35
£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
Back to section head
come from.
QOF Epilepsy Achievement
100.00%
90.00%
80.00%
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
2006/7
2007/8
2008/09
There is a linear correlation between
epilepsy register size and spend.
Spend and register size
£140,000
£120,000
y = 1189.9x + 6222.3
R2 = 0.8269
Practice spend on AED
£100,000
£80,000
£60,000
£40,000
£20,000
£-
0
20
40
60
80
100
120
Register size (EP 8 Numerator)
• The larger the practice register of epilepsy patients (EP8 Denominator), the
more the spend on AED. Strong positive correlation
Back to contents
Back to section head
There is no correlation between spend
and seizure control.
•
•
Correlation between Spend on AED and Seizure Control
£120,000
£100,000
Spend per practice (£)
•
£80,000
£60,000
£40,000
y = 23695x + 15653
R2 = 0.0492
•
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
£20,000
spend on AED / epilepsy patient (Ep 8 Denominator)
7000
£-
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
6000
Ep 8. Seizure control
5000
•
•
Spend (on AED) per epilepsy patient (EP8
denominator) ranges from £200 - £5000.
With the exception of some outliers, the range is
relatively tight.
4000
3000
2000
1000
0
Back to contents
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
Back to section head
Regional comparisons in AED
prescribing
See Addendum
Secondary care
Back to contents
Back to section head
IP Spend on Epilepsy
08 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
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
Non Elective
Back to contents
Back to section head
Economics of epilepsy
Back to contents
Back to section head
o
Economics of Epilepsy Care.
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.
Back to contents
Back to section head
Extrapolated cost / patient / year.
From Jackoby 1998
2010 cost.
Extrapolated forward 0 seizures in past < 1 seizure /
from 1998 study
year
month
> 1 / month
all pt
n=
377
204
204
notes
785
hospital care
86
907
1683
715
community care
15
34
85
38
drug costs
130
235
406
229
education
Total estimated cost
401
632
1255
2431
2829
5004
1254
2236
includes OP, IP, A&E, Ix, EEG,
Bloods
Includes GP, PN, DN, HV, SN,
Psychol, Psyciatric
NB significant change in AEDs
since 1998
Includes Residential care, day
care
this assumes:
3% inflation year on year
no change in costing infrastructure in hospital /communi
no change in drug utilisation.
thus view the 2009 estimated cost as a conservative effo
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
Epilepsy Deaths
Back to contents
Back to section head
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
Back to contents
Back to section head
Approximately 10 people die FROM epilepsy in any given year
Mortality from epilepsy (ICD9 345 adjusted, ICD10 G40-G41). DSR. Persons.
1993 - 2007
•
•
60% of deaths from epilepsy are SUDEP
40% of deaths from epilepsy are thought to be avoidable.
Epilepsy has a higher mortality rate than asthma.
Back to contents
•
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.
Back to section head
Deaths are principally in older people
Age Specific Death Rate / 100,000 .
Epilepsy. 1993 - 2007
•
Back to contents
There are unlikely to be
any statistically
significant differences
between death rate in
Bradford and that
recorded elsewhere
Back to section head
c) Parkinson's Disease - Health
Care utilisation and outcomes
Back to contents
Back to section head
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
Back to contents
Back to section head
Total spend on PD Drugs is increasing.
Total spend on drugs used in parkinsonism and related (BNF 4.9)
850000
800000
750000
700000
1/3 pt not able to tolerate LDopa; and many of those
gaining initial benefit will
eventually deteriorate.
Significant side effects – 4080% of patients
650000
600000
550000
500000
450000
400000
2006/07
2007/08
2008/09
2008/2009
B83620
B83621
B83622
B83626
B83631
B83638
B83641
B83647
B83653
B83657
B83659
B83660
B83661
Y01118
B83700
B83611
B83627
B83658
B83070
B83071
B83602
B83624
B83642
B83056
B83058
B83063
B83613
B83628
B83052
B83064
B83614
B83039
B83043
B83061
B83604
B83034
B83035
B83040
B83054
B83067
B83030
B83031
B83044
B83062
B83026
B83027
B83028
B83041
B83055
B83021
B83022
B83032
B83045
B83017
B83018
B83019
B83020
B83029
B83042
B83012
B83013
B83014
B83015
B83016
B83023
B83037
B83008
B83009
B83010
B83011
B83025
B83038
B83049
B83069
B83617
B83629
2007/2008
B83050
2006/2007
B83033
B83002
B83005
B83006
B83007
Practice level spend / 1000 registered
pop >60yrs
140000
120000
100000
Variation in spend on PD
drugs per 1000
registered patients > 65.
80000
60000
40000
20000
0
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
2006/07
1255
£716,200
3492
2007/08
1560
£964,482
4649
2008/09
1938
£893,747
3608
2009/10
831
£395,526
1759
Non Elective
Back to contents
Back to section head
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
Back to contents
Back to section head
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]
Back to contents
Back to section head
Economics of PD
Back to contents
Back to section head
COST OF PD – Findley et al 2003
Age
NHS cost
Cost of public
services
Private Cost
SS 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
•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
Back to contents
H&Y Stage
Based on extrapolated findings of
Findley et al
this 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 cost
Cost of public
services
SS Cost
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
Back to section
head
8344
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
d) Multiple Sclerosis - Health
Care utilisation and outcomes
Back to contents
Back to section head
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.
Back to contents
Back to section head
IP care
Inpatients Multiple Sclerosis
Fiscal Year Spells
Diagnosis Codes
Cost
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
3893 £1,851,892
6393
Grand Total
1097
7000
6000
5000
Chart: Number of elective
and non-elective admissions
3yr Data
4000
3000
2000
1000
0
Elective
Back to contents
2006/07
2007/08
2008/09
Non
Elective
2006/07
2007/08
2008/09
Back to section head
e)
Back to contents
Other Neurological conditions
Health Care utilisation and
outcomes
Back to section head
• 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.
Back to contents
Back to section head
f) Programme Spend on
patients with neurological illness
DH Programme Budget data.
Back to contents
Back to section head
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.
Back to contents
Back to section head
Spend on ‘Neurological’ in context.
33m on Neurological. £16m on Neurol, £16m on
‘chronic pain’
Bradford and Airedale Teaching PCT
Expenditure on own population (£000s)
01
02
03
04
05
06
07
08
09
10
11
12
13
14
15
16
17
18
19
20
21
22
23
All
Back to contents
Programme Budgeting Category
Infectious Diseases
Cancers and Tumours
Disorders of Blood
Endocrine, Nutritional and Metabolic
Mental Health Disorders
Problems of Learning Disability
Neurological
Problems of Vision
Problems of Hearing
Problems of Circulation
Problems of the Respiratory System
Dental Problems
Problems of Gastro Intestinal System
Problems of the Skin
Problems of Musculo Skeletal System
Problems due to Trauma and Injuries
Problems of Genito Urinary System
Maternity and Reproductive Health
Conditions of Neonates
Adverse effects and poisoning
Healthy Individuals
Social Care Needs
Other
Total
2006-07
6,676
42,591
5,194
25,081
81,687
19,287
25,639
13,486
4,224
62,416
32,832
30,645
36,813
22,069
20,861
21,126
61,635
32,060
6,963
5,108
12,385
18,785
103,483
691,046
2007-08
5,958
42,580
6,296
23,582
94,097
21,994
35,378
18,461
10,630
63,154
37,856
41,414
44,113
20,792
26,670
37,770
28,923
38,576
6,746
9,076
8,032
25,128
104,822
752,048
% change from
2007-08
7,409
24%
44,420
4%
9,334
48%
26,647
13%
100,121
6%
20,933
-5%
33,060
-7%
22,116
20%
5,012
-53%
69,448
10%
43,590
15%
40,448
-2%
41,182
-7%
18,398
-12%
29,811
12%
25,264
-33%
40,887
41%
34,841
-10%
11,475
70%
7,183
-21%
30,884
285%
28,986
15%
126,856
21%
818,305
9%
2008-09
Back to section head
Spend on ‘Neurological’ in context
spend per 100,000 population. 61% in sec care.
39% in prim care
NHSBA
Expenditure £ per 100,000 population
Primary care
Programme Budgeting Category
01
Infectious diseases
523,455
38
02
Cancers and Tumours
2,021,328
13
03
Disorders of Blood
106,650
100
04
Endocrine, Nutritional and Metabolic
3,608,036
problems
4
05
Mental Health Disorders
3,025,918
41
06
Problems of Learning Disability 143,859
68
07
Neurological
1,473,281
50
07a
Chronic Pain
150,359
62
07x
Neurological (Other)
1,322,922
46
08
Problems of Vision
1,628,100
4
09
Problems of Hearing
407,377
11
10
Problems of circulation
4,942,472
24
11
Problems of the respuratory system
2,655,143
33
12
Dental Problems
5,994,687
20
13
Problems of The gastro intestinal
1,520,501
system
55
14
Problems of the skin
1,644,252
6
15
Problems of the Musculo skeletal
1,011,193
system
72
16
Problems due to Trauma and Injuries
753,623
40
17
Problems of Genito Urinary system
977,367
64
18
Maternity and Reproductive Health
749,844
35
19
Conditions of neonates
557,848
5
20
Adverse effects and poisoning
0
N/A
21
Healthy Individuals
1,429,201
75
22
Social Care Needs
867,196
48
23
Other
15,229,506
76
All
Total 51,270,838
45
Secondary care
46%
25%
9%
81%
17%
3%
22%
5%
39%
47%
20%
41%
37%
77%
18%
42%
20%
11%
18%
10%
44%
0%
94%
18%
77%
36%
602,445
6,025,134
1,083,123
848,320
14,755,855
4,012,409
5,212,199
3,155,154
2,057,045
1,860,527
1,601,404
6,991,916
4,498,611
1,831,432
6,815,655
2,284,870
4,028,711
6,383,879
4,488,293
6,539,970
716,963
1,715,117
88,628
3,881,312
4,579,000
90,845,773
141
138
134
145
80
88
53
10
123
88
4
128
87
38
33
40
140
25
133
30
136
39
149
24
92
114
54%
75%
91%
19%
83%
97%
78%
95%
61%
53%
80%
59%
63%
23%
82%
58%
80%
89%
82%
90%
56%
100%
6%
82%
23%
64%
£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 care
Recall 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)
Back to contents
Back to section head
Growth in spend in Neurological
Programme 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.
Back to contents
Back to section head
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
Back to contents
Back to section head
Spend and outcomes. Non Elective Admissions.
Average Non El Admits. Average spend
Bradford falls within the circle.
Back to contents
SAR
Non Elective Admissions and Programme Spend (£m / 100,000 pop)
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
Back to contents
Back to section head
pop)
Spend AND outcomes (1)
Lower spend. Better
outcomes.
Back to contents
Back to section head
Spend and outcomes in context, across
all areas of health spend.
Infectious Diseases
Cancers and Tumors
Blood Disorders
Worse Outcome
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
Better Outcome
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
Neurological illness
is a mid sized
programme in terms
of spend –
comparative to other
programme areas
Spend is average
compared to other
PCT areas
Outcomes are better
Healthy individuals
Social Care needs
Higher Expenditure
Lower Expenditure
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 yaxis how our outcomes compare with our peers.
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
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
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
Epilepsy Specific Services
Specialist 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
Back to contents
Back to section head
MND Specific Services
• There is no specialist nursing staff for MND
Back to contents
Back to section head
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
Back to contents
Back to section head
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?
Back to contents
Back to section head
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.
Back to contents
Back to section head
b) Priorities for service
improvement and investment
As set against the National Service
Framework Quality Standards.
Back to contents
Back to section head
National Service Framework for Long
Term Conditions. DH. 2005
Back to contents
• 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 Back to section head
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.
Back to contents
Back to section head
Assessment of the main issues to
address in each of the standards set
out in the NSF
Based on feedback from the visioning
day
Back to contents
Back to section head
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 address
1. Key worker contact
2. Managed Transition
3. Meeting needs of family and social care
4. Better information
Back to contents
Back to section head
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 address
1.
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 systems
4.
Lean the pathways , benchmark against others and make appropriate increases to
the workforce
5.
Improved specialist and specialist nurse availability for wide range of neuro
disorders / One stop clinic – Specialist Nurses
6.
Quick access to medical assessment / faster diagnosis
7.
Set guidelines all to be aware primary and secondary teams
8.
GPSI Capacity – early Dx / Tx
9.
Education – public, patients, staff
10. Access to psychological support
Back to contents
Back to section head
Prompt diagnosis, appropriate referral and treatment
QR3 – Emergency & Quality Management
People 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 address
Standards 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 care
Seamless – keyworker – personalised care
24 hour emergency access including care provider e.g. system used by
palliative care
Back to contents
Back to section head
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 address
1.
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 decision
4.
pathways allow for patients from all areas serviced by BTHT and ANHST and that
B&A patients seen elsewhere are also covered
5.
Access equity audit
6.
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 reaching
Back to contents
Back to section head
Rehabilitation, adjustment and social integration
QR5 – Community Rehabilitation & Support
People 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 address
1. 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)
Back to contents
Back to section head
Rehabilitation, adjustment and social integration
QR6 – Vocational Rehabilitation
People 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 address
1.
- Clear pathways - navigator, incorporating patient view, clear access into
specialist services, patient urgent access
2.
- Training – access routes, skills right person, right time, right place, GP updates
3.
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.
Back to contents
Back to section head
Lifelong care and support for people with longterm neurological conditions, families and carers
QR7 – Providing Equipment & Accommodation
People 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 address
1.
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.
Back to contents
Back to section head
Lifelong care and support for people with longterm neurological conditions, families and carers
QR8 – Personal Care & Support
Health 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 address
1.
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)
Back to contents
Back to section head
Lifelong care and support for people with longterm neurological conditions, families
and carers
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 address
1.
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 care
4.
IT – Enabling shared information between services and professionals (4)
5.
Support for carers including respite (7)
Back to contents
Back to section head
Lifelong care and support for people with longterm neurological conditions, families and carers
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 address
1.
INFORMATION AND COMMUNICATIONS (17). Carer information is not the same as patient
information
2.
TRAINING AND WORKFORCE DEVELOPMENT (5). Training and support to PCT/ Social
Services staff from carers and voluntary agencies
3.
KEYWORKER (TRANSITIONS) (7). Key worker for carer in their own right
4.
SPECIALIST MDT ASSESSMENTS (9). MDT – needs to include social and health care and
follow into community – regular reviews
5.
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
Back to contents
Back to section head
Lifelong care and support for people with longterm neurological conditions, families
and carers
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 address
1.
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)
Back to contents
Back to section head
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
Back to contents
Back to section head
Guidelines and best practice in
treatment of neurological illness
6)
a)
b)
c)
d)
Back to contents
National Service Framework
NHS Scotland
Association of British Neurologists
Disease specific Clinical
Guidelines
Back to section head
•
Much work has already been done that
considers appropriate service models:
a) National Service Framework – 2005
b) Scott-Moncrieff – NHS Scotland 2008
c) Association of British Neurologists -1997
Back to contents
Back to section head
a) National Service Framework
Back to contents
Back to section head
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
Back to contents
Back to section head
b) Scott-Moncrieff – NHS
Scotland 2008
Back to contents
Back to section head
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).
Back to contents
Back to section head
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 overview
Many 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.
Back to contents
Back to section head
Issue
Points highlighted
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
patients
Information
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
Back to contents
Back to section head
Issue
Points highlighted
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.
Back to contents
Back to section head
c) Association of British
Neurologists
Recommendations for neurology and
neurosurgery service configuration
Back to contents
Back to section head
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
Back to contents
Back to section head
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 these
recommendations.
The NHS has changed significantly since 1997.
Back to contents
Back to section head
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 service
2. Services for acute neurological problems
3. Access to a sophisticated network of subspecialist diagnostic and treatment services.
4. Services that provide long term care and, when
necessary, rehabilitation.
ABN 1997
Back to contents
Back to section head
A network of Neurology Services will enable patients to
achieve the right level of service at the right time
•
•
•
Back to contents
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 Unit
2.
Neurology Centre - a specialised
neurology unit without neurosurgery
3.
Neurology and Neurosurgery Centre similar to the current regional and subregional 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.
Back to section head
d) Disease specific Clinical
Guidelines
•
•
•
Back to contents
Epilepsy
MS
PD
Back to section head
NICE CG 20 - Epilepsy
As 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
Back to contents
Back to section head
Recommendations of NICE CG08 - MS
Key priorities for implementation
1.
2.
3.
4.
5.
6.
Back to contents
Specialised services - Specialist neurological and
neurological rehabilitation services should be available to
every person with MS, when they need them.
Rapid diagnosis - An individual who is suspected of having
multiple sclerosis should be referred to a specialist
neurology service, and seen rapidly.
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.
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.
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.
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.
Back to section head
National Audit of MS Care
•
•
•
•
Back to contents
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.
Back to section head
Findings
•
•
•
•
•
•
Back to contents
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
Back to section head
Recommendations
Back to contents
Back to section head
CG 35 - PD
Back to contents
Back to section head
7) Summary and key issues to
address
a)
b)
c)
d)
Back to contents
Data, epidemiology, service utilisation and outcome.
District priorities for change
Service configuration and model of care
Commissioning and planning framework
Back to section head
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)
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
Bradford compared to National Model
Condition
Aphasia
Acquired Brain Injury
Acquired Spinal Cord Injury
Ataxia
Cerebral Palsy
Charcot-Marie Tooth Disease
Dementia & Early Onset Dementia
Dystonia
Encephalitis
Epilepsy
Essential Tremor
Huntington's Disease
Hydrocephalus
Migraine
Motor Neurone Disease
Multiple Sclerosis
Muscular Dystrophy
Myasthenia Gravis
Narcolepsy
Neurofibromatosis
Parkinson's Disease
Post Polio Syndrome
Progressive Supranuclear Palsy
Spina Bifida
Stroke
Syringomyelia
Tourette's Syndrome
Transverse Myelitis
Trigeminal neuralgia
Tuberous Sclerosis
Others:
National
Prevalence*
0.370%
0.183%
0.070%
0.010%
0.170%
0.038%
1.180%
0.062%
0.396%
0.770%
0.500%
0.016%
0.010%
13.220%
0.008%
0.180%
0.050%
0.016%
0.160%
0.039%
0.198%
0.396%
0.016%
0.023%
0.495%
0.008%
0.050%
0.001%
0.013%
Expected
Number*
This will calculate
automatically
2009
994
380
54
923
206
6407
337
2150
4181
2715
87
54
71781
43
977
271
87
869
212
1075
2150
87
125
2688
43
271
5
0
71
212
Known
Number
In Audit?
Use Drop
down List
5933
47
614
547
Notes
-
Bradford and Airedale. 502k p. 2009 JSNA
Bradford 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).
Local Prevalence of some conditions –
taken from data in System 1 practices
Bradford Calcluations of Neurepidemiology From SystemOne Data
Disease
MS
PKD
MND
Epilepsy
95%ci (-)
100
70
6
745
DSR
109
76
8
769
95%ci (+)
118
84
11
793
Prevalence (numbers) Prevalence % (crude) Crude rate per 100,000
614
0.11
113.1
547
0.10
100.7
47
0.01
8.7
5933
1.09
1092.7
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.
Back to contents
Back to section head
Thinking epidemiologically and demographically – the population of people
with neurological conditions WILL grow
A prevalence forecasting model
suggests the following:
By 2015: 307 extra cases of Epi
By 2020: 564 extra cases of Epi
By 2030: 1364 extra cases of Epi
NB Caution re interpretation.
Estimate based on S1
By 2015: 23 extra cases of PKD
By 2020: 51 extra cases of PKD
By 2030: 106 extra cases of PKD
By 2015: 23 extra cases of MS
By 2020: 51 extra cases of MS
By 2030: 106 extra cases of MS
•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 growth
Does 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)
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.
Back to contents
Back to section head
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.
Back to contents
Back to section head
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
More inpatient and outpatient spend.
OP Spend over time
£1,000,000
£900,000
£800,000
£700,000
£600,000
£500,000
£400,000
£300,000
£200,000
£100,000
£0
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
neurologist
Assume 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
Back to contents
Back to section head
All Admissions. Primary diagnosis.
4000000
3500000
3000000
2500000
Multiple Sclerosis
Parkinsons Disease
2000000
Parkinsons Disease (inc SPism)
1500000
Epilepsy
1000000
MND
500000
0
2006/07
2007/08
2008/09
Admissions for epilepsy appear to be increasing. Admissions for other
main disease groups appear to be relatively stable
Back to contents
Back to section head
Spend by admission type – emergency
admissions are increasing markedly
16000000
14000000
12000000
10000000
Elective Admissions
Emergency Admissions
Other non-elective
8000000
6000000
4000000
2000000
0
2006/07
2007/08
2008/09
• 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.
Back to contents
Back to section head
Spend on ‘Neurological’ in context
spend per 100,000 population. 61% in sec care.
39% in prim care
NHSBA
Expenditure £ per 100,000 population
Primary care
Programme Budgeting Category
01
Infectious diseases
523,455
38
02
Cancers and Tumours
2,021,328
13
03
Disorders of Blood
106,650
100
04
Endocrine, Nutritional and Metabolic
3,608,036
problems
4
05
Mental Health Disorders
3,025,918
41
06
Problems of Learning Disability 143,859
68
07
Neurological
1,473,281
50
07a
Chronic Pain
150,359
62
07x
Neurological (Other)
1,322,922
46
08
Problems of Vision
1,628,100
4
09
Problems of Hearing
407,377
11
10
Problems of circulation
4,942,472
24
11
Problems of the respuratory system
2,655,143
33
12
Dental Problems
5,994,687
20
13
Problems of The gastro intestinal
1,520,501
system
55
14
Problems of the skin
1,644,252
6
15
Problems of the Musculo skeletal
1,011,193
system
72
16
Problems due to Trauma and Injuries
753,623
40
17
Problems of Genito Urinary system
977,367
64
18
Maternity and Reproductive Health
749,844
35
19
Conditions of neonates
557,848
5
20
Adverse effects and poisoning
0
N/A
21
Healthy Individuals
1,429,201
75
22
Social Care Needs
867,196
48
23
Other
15,229,506
76
All
Total 51,270,838
45
Secondary care
46%
25%
9%
81%
17%
3%
22%
5%
39%
47%
20%
41%
37%
77%
18%
42%
20%
11%
18%
10%
44%
0%
94%
18%
77%
36%
602,445
6,025,134
1,083,123
848,320
14,755,855
4,012,409
5,212,199
3,155,154
2,057,045
1,860,527
1,601,404
6,991,916
4,498,611
1,831,432
6,815,655
2,284,870
4,028,711
6,383,879
4,488,293
6,539,970
716,963
1,715,117
88,628
3,881,312
4,579,000
90,845,773
141
138
134
145
80
88
53
10
123
88
4
128
87
38
33
40
140
25
133
30
136
39
149
24
92
114
54%
75%
91%
19%
83%
97%
78%
95%
61%
53%
80%
59%
63%
23%
82%
58%
80%
89%
82%
90%
56%
100%
6%
82%
23%
64%
£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 care
Recall 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)
Back to contents
Back to section head
b) District priorities for change
Back to contents
Back to section head
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.
Back to contents
Back to section head
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.
Back to contents
Back to section head
6 district wide priorities emerged
1.
2.
3.
4.
5.
6.
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.
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.
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.
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.
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.
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
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:
Back to contents
– 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 communitybased services are new resources and resources
currently used for hospital OP / IP services are old
resources.
Back to section head
c) Service configuration, and
model of care
Back to contents
Back to section head
The strategy and model of care that supports it must cover
both ends, and everything in the middle.
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
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
Back to contents
Back to section head
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.
Back to contents
Back to section head
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
Back to contents
Long Term Neurological Conditions Vision
Level 4
Secondary care
Consultant Network
Level 3 –
Neurological GPSI
Service
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 1Primary Care
GP support/care closer to home/self care/telemedicine.
Self care in ongoing therapy vs
maintenance therapy
Self management – signposting
people for advice.,
Back to section head
d) Commissioning and planning
framework.
Back to contents
Back to section head
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.
Back to contents
Back to section head
Collaboration potential within
planning arrangements.
National
Specialised
Emergency care
Acute care, including critical
care, surgery & observation
Diagnostic services
Interdisciplinary 24hour rehab
OP short-term medical followup
Disease management

national spinal,
some
neurosurgery
Regional Specialized Sub Regional Collaborative Individual PCT



neurosurgery, neuro
polytrauma,
critical
head injury observation
care



potential for collaborative
procurement arrangements for very
complex cases and/or
those requiring very specialist

Provision


Specialist symptom
management (medical/MDT)
Carer support & services
Advocacy
Care planning, planned
review & case management
Palliative care
Interdisciplinary community
reintegration
Interdisciplinary ongoing
enablement
Vocational advice & rehab
Joint PCT / LA




dependent on level of
speciality, required
volume etc.

dependent on level of
speciality, required volume etc.
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







potential for joint
commissioning with DWP
Supported living options
Respite care
Equipment & smart
technologies

potential for joint
commissioning with DWP

potential for joint
commissioning with DWP



Maggie Campbell, NHS Sheffield.
Back to contents
Back to section head
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.
Back to contents
Back to section head
8
Back to contents
Selected References
Back to section head
Selected references
1.
2.
Jader L. An Overview of Neurological Disorders in Wales. Neuroepidemiology 2007; 28:65–78
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; 66:63640. . 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
Back to contents
Back to section head