Transcript www.observatory.bradford.nhs.uk

7) Summary and key
issues to address
a)
b)
c)
d)
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Data, epidemiology, service utilisation and
outcome.
District priorities for change
Service configuration and model of care
Commissioning and planning framework
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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)
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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
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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.
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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).
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.
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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.
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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.
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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.
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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
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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
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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
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16000000
Spend by admission type –
emergency admissions are
increasing markedly
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.
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Spend on ‘Neurological’ in context
spend per 100,000 population. 61% in sec
care. 39% in prim care £31 / capita on
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%
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)
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b) District priorities for
change
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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.
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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.
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6 district wide priorities emerged
1. Multi Disciplinary Team working (score 118)– cutting down the barriers between health,
social and voluntary sector department to ensure Patients and Carers have the most
appropriate care at the right time, the right place and at the right stage of the condition.
Working with a navigator to direct patients and carers to the most appropriate service to
meet their individual needs.
2. Consultant Network across the Bradford and Airedale Health Economy, feeding into a
Neurological GPSI service that is supported both Inreach and outreach by a community
nursing/therapy/social services team.
3. Rehabilitation (Score 77) – There are 3 Quality Requirements that fall under the umbrella
of rehabilitation. More neurological specialist therapist, neuropsychology services and
training required, assistive technology (which would fall under the self care strategy) clear
pathways and a navigator. Better access to equipment is also stated with a Navigator being
fundamental in pin pointing what is and what could be made available. Neuro
Rehabilitation Consultant would also be invaluable at BTHT mirroring AGH adding to the
Consultant Network.
4. Education (Score 69) – This is applies to Health professionals from primary care through
to Secondary care from patients and carers to voluntary sector and Social care. It based
around what is available, what is appropriate for the patients and families, but can only be
completed once the MDT is holistic and consistent across the health economy. That should
be the “first fix” and education rolled out and based around that team.
5. Key Worker (Score 57) – This sits in my opinion within the MDT but scored enough points
to be placed within the top 5 highest scores. This and the MDT total equate to 175 – this
can not be ignored and paramount within the potential re-design of current services and
any potential new investment in Neurological services.
6. Pathways (Score 44) – Pathway redesign to ensure that all stakeholders know what
services are where, how to access them and what is available. This would require clinical
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input and would sit within the re-design team.
Top 9 Priorities for the district arising from the visioning
day.
- Rehab services - including psychology (ongoing rehab and day case facilities) and Bradford and
Airedale appropriate to age and condition (42)
- Access to specialist rehab units so that people spend most of the time in the most appropriate
setting access and equity audit (35)
- Integrated health and social and voluntary practice. (30) Within this MDT BUT a key worker –
co-ordinator of personalised care plan. Don’t forget the patient and their need assessment.
- Investment – making the most of current monies. (22) Working smarter not harder
- Multi- Agency Working and Integration (20)
- Physio/OT Services/Training Programme (18) - Investment in O/T Capacity - increase skill mix in
MDT to take on duties.
- Training and Education for carers and staff and all others involved (e.g. employers ) public
awareness (18)
- “Champions” for rehabilitation in acute and community settings (health and social care/ LA at
executive/ director level) (18)
- MDT’S – WORKFORCE (18)
Full set of themes emerging in the notes page
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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:
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– Achieving a shift from primary to secondary may
be a good thing, but it may not be cost neutral.
– Shifting from acute to community, from a pure
economic perspective, may not be cost neutral.
– Resources required to achieve the shift to
community-based services are new resources
and resources currently used for hospital OP / IP
services are old resources.
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c) Service configuration, and
model of care
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The strategy and model of care that supports it must
cover both ends, and everything in the middle.
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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
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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.
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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
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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.
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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
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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.
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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
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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.,
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d) Commissioning and planning
framework.
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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.
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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.
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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.
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