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Title: NHS Next Steps Review: Initial Briefing Materials on End of Life Care


1
NHS Next Steps ReviewInitial Briefing Materials
on End of Life Care
DRAFT
3 October 2007
2
Introduction to this regional briefing
  • This briefing is intended to act as an
    introductory overview for the clinical group
  • It reviews the current situation in this clinical
    area across the West Midlands, outlines selected
    parts of a case for change, and provides some
    examples
  • This briefing is intended as the start of a wider
    process and as a helpful dialogue
  • It aims to be fully consistent with the NHS West
    Midlands strategy document Investing for Health
    which also provides useful material in this
    clinical area

Purpose
Fit with national briefing materials
  • The Department of Health (DH) has produced a
    separate introductory briefing that covers
  • Key national facts and figures on this clinical
    area
  • An overview of the evidence base on good practice
    in this area
  • National or international case studies of
    successful work
  • We have designed this regional briefing to avoid
    overlap with the DH materials, by focusing on
  • Presenting the regional situation
  • Starting to develop the case for change
  • Putting forward some local examples of good
    practice or innovation
  • This document points out some significant
    variations across the West Midlands and compares
    the West Midlands with other regions
  • Understanding the root causes of regional
    variations can help identify best practices and
    improve outcomes across the health economy
  • In a region such as the West Midlands, variations
    in practice or outcomes are typically not caused
    by resource availability
  • Understanding what really drives this variation
    is likely to surface a number of improvement
    opportunities that can be taken forward by the
    clinical group

Interpreting regional variation
3
Introduction to this regional briefing (cont.)
  • The document therefore contains the following
    parts
  • Current situation across all clinical areas The
    challenges facing the West Midlands health
    services as a whole, across all clinical areas
  • Current situation in this clinical area The
    starting point for this clinical area
    specifically, covering questions such as access,
    investment, inequalities and outcomes
  • Case for change Selected issues with current
    common practice in the West Midlands
  • Vision for the future Examples of successful
    work in the West Midlands to date, and some
    questions on the future path of services that
    your group may wish to consider.

Structure of this document
Further development
  • NHS West Midlands intends this to be the start of
    a dialogue
  • In particular, if you believe that some analyses
    in this document are misleading or incorrect,
    then we would welcome it if you would provide us
    with more appropriate, up-to-date or accurate
    information

4
Contents
  • Executive summary
  • Current situation
  • Challenges facing the West Midlands health system
  • Current situation in end of life care
  • Case for change
  • Vision for the future

5
Executive summary End of Life Care
  • The West Midlands health system faces 7
    challenges outlined in Investing for Health
    widening inequalities, variability in quality and
    safety, services that are difficult to navigate,
    low public confidence, too little prevention, low
    return on investment, and cost pressures
  • Within end of life care we note that
  • End of life care is a significant issue today and
    will become more so as the elderly population of
    the region rises
  • Most deaths in the region take place in hospital,
    although most patients would prefer to die at
    home
  • End of life care has a significant impact on
    resources takes up many bed days in secondary
    due to long lengths of stay

Current situation
Case for change
  • We identify four aspects of the case for change
    in the West Midlands
  • End of life care system is not always
    co-ordinated and seamless
  • Options for patients dying from conditions other
    than cancer can be limited
  • Carer support is not always adequate and carers
    may not be available
  • Hospices would be the answer for some cases but
    access to hospices varies significantly across
    the region, and is more challenging in areas with
    high deprivation

Vision for the future
  • A range of suggestions have been articulated in
    Investing for Health
  • Examples of good practice and innovation exist in
    the region, such as the Pan-Birmingham Palliative
    Care Networks enablement model and the
    Supportive Care Pathway
  • There are therefore several questions about the
    future direction for the clinical group to
    consider, including
  • What is your vision for end of life care going
    forward?
  • How can we build on our achievements and
    innovation?
  • What are the biggest challenges? How can they be
    overcome?

6
Contents
  • Executive summary
  • Current situation
  • Challenges facing the West Midlands health system
  • Current situation in end of life care
  • Case for change
  • Vision for the future

7
The West Midlands health system faces 7 challenges
Challenge
1
Outcomesand quality
Widening inequalities
Despite improvements in overall health status,
inequalities in health have widened
2
There remains an unjustifiable variability in the
quality and safety of services and individual care
Variability in quality and safety
3
Patientfocus
We do not always help patients to navigate the
system
Difficult to navigate
4
Low public confidence
The public, our customers have little
confidence that their local NHS will get better
5
Too little prevention
We are not achieving enough in prevention
Investmentfocus
6
We spend substantial amounts of resources on
clinical activities where there is little return
on investment in terms of improved health, or
where there are more cost-effective alternatives
Low return on investment
7
Cost
The rate of cost pressures arising from doing
more of the same outstrips any conceivable rate
of increased funding
Cost pressures and opportunity costs
Source Investing for Health
8
Inequalities in health are significant
471
1
Deprivation index
Standardised years of life lost per 10,000
population
200305 pooled
2004 ward-based figures
Warwickshire
Worcestershire
Shropshire
South Staffs
Herfordshire
Solihull
North Staffs
Telford Wrekin
Dudley
West Mids average
Coventry
Walsall
Wolverhampton
Stoke on Trent
Sandwell
S Birminghanm
Heart of Birmingham
Birmingham E N
England average
Standardised YLL rate is the number of years
of life lost divided by the age-standardised
resident population aged under 75 years. The
age-standardised rate is the rate of events that
would occur in a standard population if that
population were to experience the age-specific
rates of the subject population Source National
Centre for Health Outcomes Development
9
and have widened in recent years
1
Gap between highest and lowest life expectancy,
years
84
Female highest
82
3.8 years
80
Female lowest
3.3 years
78
Male highest
76
4.9 years
74
4 years
Male lowest
72
19911993
9294
9395
9496
9597
9698
9799
982000
9901
200002
0103
0204
20032005
Source National Centre for Health Outcomes
Development
10
There remains an unjustifiable variability in the
quality and safety of services and individual care
90
2
STROKE EXAMPLE
Equal to or above national average
Below national average
2006 audit
Patients treated in a stroke unit,
Emergency brain scan within 24 hours of stroke,
Screening for swallowing disorders within 24
hrs of admission,
Trust (Site)
Burton Hospitals
Dudley Group of Hospitals
George Eliot
Good Hope Hospitals
Heart of England
Hereford Hospitals
Mid Staffordshire General Hospitals
Royal Wolverhampton Hospitals
Sandwell and W Birmingham (City Hospital)
Sandwell and W Birmingham (Sandwell District
Hospital)
Shrewsbury Telford Hospital
University Hospital Birmingham
South Warwickshire General Hospitals
N/A
100
South Worcestershire PCT
University Hospital North Staffordshire North
Staffords
UH Coventry and Warwickshire (St Cross Rugby)
UH Coventry and Warwickshire (Walsgrave Hospital)
Walsall Hospitals
Worcestershire Acute Hospitals (Alexandra H,
Redditch)
Worcestershire Acute Hospitals (Worcester Royal
Hospital)
62
66
42
National average
International evidence indicates maximum of 3
hours is preferred
England, Wales and Northern Ireland Source T
he National Sentinel Audit of Stroke 2006,
February 2007
11
We do not always help patients to navigate the
system
129
3
are serious in the West Midlands and result in
high emergency admissions rates
Issues with providing joined-up care for asthma
Standardised emergency hospital admissions for
asthma, 2004. Average admission rate 100
  • In England
  • 1 in 4 people with asthma are not offered or do
    not have a routine asthma review
  • More than three-quarters of all adults and
    children with asthma (82 and 75 respectively)
    do not have written personal asthma action plans
  • 12 of people who had experienced an asthma
    attack requiring emergency care do not know what
    to do during an asthma attack, and 16 do not
    know what to do after an attack
  • People who do not have a written personal asthma
    action plan are four times more likely to have an
    asthma attack requiring hospital treatment than
    those with a plan

East
South East
South West
London
East Midlands
North East
West Midlands
Yorkshire andHumberside
North West
Source The Asthma Divide, Asthma UK, 2007
12
The public, our customers have little
confidence that their local NHS will get better
32
4
Thinking about the health services in your area,
do you expect them to . . .?
dont know
. . . get much better
. . . get much worse
11
2
. . . get better
29
. . . get worse
. . . stay about the same
Source Ipsos MORI Survey for NHS West Midlands
August and September 2006 3,555 responents
13
We are not achieving enough in prevention
18
5
Smoking cessation success rate
Women smoking during pregnancy
06/07, of people who set a quit date who
successfully stopped smoking
2005/06, of births
Telford And Wrekin
Shropshire County
Birmingham E N
South Birmingham
South Staffordshire
Heart Of Birmingham
Worcestershire
Solihull Care
Coventry
West Mid Avg
Dudley
Herefordshire
North Staffordshire
Warwickshire
Walsall
Stoke On Trent
Wolverhampton City
Sandwell
National average
53
15.9
Source The Information Centre for Health and
Social Care, Healthcare Commission Annual Health
Check
14
We continue to spend substantial amounts of
resources on clinical activities where there is
little return on investment in terms of improved
health, or where there are more cost-effective
alternatives
121
6
Improvement opportunity from bringing
standardised surgery rate for 5 procedures down
to that of lowest quartile
Relative level of surgery
HRG cost, annualised, 000
Actual vs. expected rate
105
Warwicks
109
S Staffs
91
Worcs
118
S Bhm
109
Sandwell
83
Bhm E N
81
Coventry
89
Solihull
69
H of Bhm
Total opportunity for five procedures in 13 PCTs
9.5m
64
Wolverhampton
79
Shropshire
68
Dudley
75
Telford Wrekin
Four PCTs excluded owing data quality or lack
of data supplied Myringotomy, hysterectomy,
lower back surgery, tonsillectomy, and dilation
and curettage. Selected because evidence-based
thresholds for when the surgery is likely to be
effective are sometimes ignored Given the
PCTs population base. 100 expected, under 100
lower than expected, over 100 higher than
expected. Figures are across all five procedures,
and so a PCT with under 100 overall can
nonetheless have savings potential as it is over
100 in one or more procedures. Source NHS
Better Care, Better Value Indicators
15
The rate of cost pressures arising from doing
more of the same outstrips any conceivable rate
of increased funding
9
7
PCT allocations, W Midlands
Annual growth rate, nominal
  • Cost of inpatient activity in the region has
    grown at around 10 annually in recent years
  • This has been manageable given the significant
    funding increases seen since the release of the
    NHS Plan
  • In the future the funding settlement is likely to
    be tighter and so similar rates of activity
    increase will not be sustainable

5
Cost of inpatient activity, W Midlands
Annual growth rate, nominal
10
10
99/0005/06
05/0611/12
Assumes 2.5 real increase above GDP
deflator Assumes continuation of historical
rate of activity growth of 6 p.a. and 4 p.a.
tariff inflation Source DH HES
16
Contents
  • Executive summary
  • Current situation
  • Challenges facing the West Midlands health system
  • Current situation in end of life care
  • Case for change
  • Vision for the future

17
This section sets the context for end of life
care in the West Midlands
  • End of life care is a significant issue today and
    will become more so as the elderly population of
    the region rises
  • Most deaths in the region take place in hospital,
    although most patients would prefer to die at home
  • End of life care has a significant impact on
    resources takes up many bed days in the
    secondary sector owing to long lengths of stay

18
The number of deaths in the West Midlands was
around 53,000 in 2005 and has been relatively
stable over time
53
Deaths in the West Midlands, 000
2001
1981
1986
1991
1996
2005
Source Mortality statistics, National Statistics
19
End of life care is a relevant topic for all age
groups, even though half of all deaths occur
amongst the over-75s
Age at death, West Midlands residents, 2004
no. of deaths
1 - 4
5 - 14
15-24
25-34
35-44
45-54
55-64
65-74
75-84
85
Note Deaths aged under 1 year excluded from
chart (415 deaths) Source Mortality
statistics, National Statistics
20
End of life care will therefore become an
increasing issueas the elderly population rises
Ages 85
Ages 8084
Elderly population in former Birmingham and the
Black Country, 000 people
000 people
2003
2008
2012
2016
2020
2024
2028
Source Population projections and their effect
on end of life care for BBCHA PCTs, Dr Khesh
Sidhu, 2005
21
Most deaths in the West Midlands currently take
place in hospital
  • Location of death, West Midlands residents, of
    all deaths in clinical category, 2002/03

1
0
Other
1
1
4
4
Home
1
Care home
1
0
Hospices
13
84
0
68
65
Hospital
52
34
Pulmonary disease
Chronic renal failure
Dementia
Cancer
Heartfailure
Source Place of death in the West Midlands, Dr
Khesh Sidhu, 2006
22
Hospital deaths are somewhat more common in the
West Midlands than for other regions in England
58
Location of death by Government Office region,
of all deaths, 2004
2
2
2
2
2
2
2
2
2
Other
3
Home
Care home
5
Hospice
5
3
4
5
3
4
5
7
4
66
Hospital
60
60
59
59
58
58
57
56
54
West Midlands
North West
East Midlands
London
North East
Yorks Humber
East
South East
South West
England
All psychiatric hospitals plus other NHS
hospitals Non-NHS communal establishments for
the care of the sick, plus other communal
establishments Source Mortality Statistics,
National Statistics team analysis
23
This is despite the fact that more cancer
patients would preferto die at home
26
BBCHA EXAMPLE
Shortfall () or excess (-) in preferred vs.
actual place of death, cancer patients, pts
19962002
Home
Acute hospital
Burntwood, L. T.
Heart of Birmingham
North Birmingham
South Birmingham
Eastern Birmingham
Rowley Regis and Tipton
Oldbury and Smethwick
Wednesbury and W Bromwich
Solihull
Source Oncology palliative care for the BBCHA
PCTs, Dr Khesh Sidhu
24
Large number of hospital deaths from cancer
appears to be irrespective of place of residence
though home deaths can and do occur across the
region
BBCHA EXAMPLE
Postcodes of cancer patients who died at home or
in hospital, 19962002
Deaths at home from cancer
are clearly outnumbered in all areas by deaths
in hospital
Dot death from cancer at home
Dot death from cancer in hospital
Source Oncology palliative care for the BBCHA
PCTs, Dr Khesh Sidhu
25
Hospital deaths from cancer vary within the West
Midlands, with a weak relationship with
deprivation level
16
Index of deprivation, 2004
Cancer deaths in hospital, 2002-03,
Former PCT name
Oldbury and Smthk.
Walsall
Heart of Bhm
Rowley Regis and Tipton
Coventry
Wednesbury and W Brom.
N Warwicks
Burntwood, L T
Rugby
Wolverhampton C.
S Birmingham
South Worcs.
Dudley, B C
N Birmingham
E Birmingham
Dudley S
Solihull
North Stoke
Staffordshire M
E Staff.
Cannock Chase
S Warwics.
Wyre Forest PCT
Redditch and Brom.
South Stoke
Shropshire C
Newcastle-u-L
SW Staffs.
Telford and Wrekin
Herefordshire
Source Place of death in the West Midlands, Dr
Khesh Sidhu, 2006 team analysis
26
End of life care represents a large number of
FCEsand bed days
105
BBCHA EXAMPLE
Final FCEs by type of admission, BBCHA PCTs,
20012003 annual average, 000
2
Equivalent to 525,000 bed days per year (or
1400 beds)
Emergency
Elective
Transfer
Total
Note Crude estimates. Numbers may be inflated
by up to 20 owing to multiple FCEs Source Basel
ine outcome measures for end of life care, Dr
Khesh Sidhu, 2004
27
Though around half of deaths in hospital occur in
the first month, some very long stays are also
observed
0.5
BBCHA EXAMPLE
Length of stay of final episode, BBCHA PCTs,
2001-2003 average, of episodes
15-21
22-28
8-14
29-99
0-7
100
Bed days
Source Baseline outcome measures for end of
life care, Dr Khesh Sidhu, 2004
28
Examples from other areas have shown that these
very longstays will be driving a large
proportion of total bed days
EXAMPLE
Length of stay (LOS) and bed days for a London
trust
7,004
99,661
100
  • ALOS is 14.2 days
  • Spells with LOS gt 28 days are only 13 of total
    but account for 62 of bed days. These must be
    addressed in any LOS reduction effort a 10 day
    (15) reduction in LOS in this group would reduce
    ALOS by 9 to 12.9 days
  • Spells with LOS between 3 and 27 days are also
    important to address, but will not by themselves
    deliver the LOS reduction target even a 25
    reduction in this group would only reduce ALOS
    by 9

LOS (days)
ALOS by group
28
15-27
8-14
67.9
3-7
19.9
10.7
2
4.4
1.0
Spells
Bed days
i.e., 5 day LOS reduction in 15-27 segment, 3
day LOS reduction in 8-14 segment, 1 day
reduction in 37 segment Source London trust
29
Hospital deaths and an ageing population will
have a significant cost impact, even without
accounting for medical and care cost inflation
,
Dementia 3
Inflation of PbR costs all end of life FCEs,
change from 2004
Heart Failure 3
All EoL FCEs
Chronic pulmonary disease 3
Chronic renal failure 3
Cancer 3
change from 2004
2000
2002
2004
2006
2008
2010
2012
2014
2016
2018
2020
2022
2024
2026
2028
2030
Source Population projections and their effect
on end of life care for BBCHA PCTs, Dr Khesh
Sidhu, 2005
30
Contents
  • Executive summary
  • Current situation
  • Challenges facing the West Midlands health system
  • Current situation in end of life care
  • Case for change
  • Vision for the future

31
Current pathway is unclear for many patients and
can mean that patient preferences are not
identified or acted upon
Discharge or transfer
Use of emergency care as default
system
Reactive care
Entry into system
Comments
  • Ad hoc via the NHS
  • GP practice and use of supportive care register,
  • Consultant providing a diagnosis (possibly shared
    with the patient)
  • Patient and carer work it out for themselves
  • Services needed and possibilities not mapped out
  • Responsive to needs or symptoms if patient and
    carer identified in part of system
  • May only happen in one service or part of a
    service
  • Fear-based use of 999 as default system when
    patients and/or carers or professionals unsure
    what to do and advanced planning and service
    provision not in place
  • Patient may die here (against choice)
  • Care can be given by professionals unfamiliar
    with the case and/or not confident in supporting
    death choices
  • Transfer may be arranged
  • Depends on
  • Equipment
  • Care funding available
  • Capacity in other organisations

Source NHS West Midlands
32
This section therefore examines 4 aspects of the
case for change in end of life care in the West
Midlands
  • End of life care system is not always
    co-ordinated and seamless
  • Options for patients dying from conditions other
    than cancer can be limited
  • Carer support is not always adequate and carers
    may not be available
  • Hospices would be the answer for some cases but
    access to hospices varies significantly across
    the region, and is more challenging in areas with
    high deprivation

33
Need has been identified for more education and a
higher prioritisation of end of life issues at GP
practices
2
Example GP audit results, Pan-Birmingham
Palliative Care Network, December 2006
Q2. Do you think postgraduate GP training
adequately prepared you to manage end of life
care?
Example recommendations
  • Practice needs to
  • Discuss which education modalities work best for
    them, and work with the Network to deliver this
  • Examine the patient audit results to find which
    situations need to be addressed, and examine its
    processes for anticipatory care
  • Identify lead clinician for each patients care
  • Explore telephone advice from specialist teams

Yes
To an extent
No
Suggested improvements (examples)
Mentoring by more experienced colleagues
Having short day courses
Opportunity to spend more time in a hospice
environment
299 patient records from patients who had died
in December 2006-March 2007 Source Pan-Birmingh
am Palliative Care Network Audit
34
Gaps occur in the joining-up of services between
PCTs and local authorities and other outside
stakeholders
Examples of issues observed in some PCTs with
local stakeholder engagement
PCT 1
  • Good working and use of funding relationship with
    Social Services lead
  • However, third sector commissioning for end of
    life needs reviewing

PCT 2
  • Social services are part of the working group but
    not fully signed up to agenda
  • No agreements for joint funding

PCT 3
  • Social services not yet fully signed up to agenda

PCT 4
  • Agreement of agenda with stakeholders less
    visible in some parts of the PCT

Source NHS West Midlands
35
Hospitals are often unable to provide the support
required by patients at the end of life
275
Example hospital audit results, Pan-Birmingham
Palliative Care Network, Spring 2007
Q4. Is the preferred place of care recorded or
actioned?
Example recommendations
215
Not recorded
Recorded but not actioned
  • Identify carers and provide more rapidly
    responsive service
  • Develop rapid discharge mechanisms from hospital
    when patients are stabilised and wish to go home
  • Develop appropriate protocols which assist
    hospital staff to enable a safe and comfortable
    death for patients, particularly in AE

Actioned
Q6. Is discharge planning evident?
Noted
275
Not noted
299 patient records from patients who had died
in December 2006 to March 2007 Source Pan-Birmi
ngham Palliative Care Network Audit
36
This section therefore examines 4 aspects of the
case for change in end of life care in the West
Midlands
  • End of life care system is not always
    co-ordinated and seamless
  • Options for patients dying from conditions other
    than cancer can be limited
  • Carer support is not always adequate and carers
    may not be available
  • Hospices would be the answer for some cases
    but access to hospices varies significantly
    across the region, and is more challenging in
    areas with high deprivation

37
Patients dying of conditions other than cancer
die less frequently at home, partly because of
pre-existing attitudes to death
58
  • Location of death, West Midlands residents, of
    all deaths in clinical category, 2002/03

1
0
1
1
Other
4
4
Home
1
Care home
1
0
  • For example, many healthcare professionals
    believe success equals care
  • For this reason, many renal failure patients die
    in hospitals, even on dialysis

13
Hospices
84
68
0
65
52
Hospital
34
Cancer
Heartfailure
Pulmonary disease
Chronic renal failure
Dementia
Source Place of death in the West Midlands, Dr
Khesh Sidhu, 2006
38
This section therefore examines 4 aspects of the
case for change in end of life care in the West
Midlands
  • End of life care system is not always
    co-ordinated and seamless
  • Options for patients dying from conditions other
    than cancer can be limited
  • Carer support is not always adequate and carers
    may not be available
  • Hospices would be the answer for some cases but
    access to hospices varies significantly across
    the region, and is more challenging in areas with
    high deprivation

39
Carer support is vital to enabling patients to
die at home or in a community setting
Factors required to support death at home
Category
  • Patients thoroughly informed about their illness
    and about dying
  • Patients preference about where they are cared
    for is known to professionals
  • Care based on the wishes of the patient and
    family
  • Patients have 24-hour, 7 day a week access to a
    range of general and specialist services
    including planned and emergency visits and are
    seen regularly by a physician or community health
    care team member
  • Community care replaces, rather than complements,
    care in hospital or other institution
  • Care provided on a multi-professional basis,
    including speech therapists, dieticians,
    physiotherapists, occupational therapists,
    podiatrists and chiropractic therapists
  • Beds available, if needed, in hospitals and other
    settings
  • Patients have available to them a range of
    technologies including infusion devices and
    spinal catheters. There is also a hospital beds
    at home scheme
  • Support offered to patients and carers to meet
    their psychological, spiritual, cultural and
    social needs
  • Help available with housekeeping, transportation
    and meals
  • Day care provided
  • Carers needs assessed to ensure employer support
    for time off to care for a loved one, know about
    the home-based services available and are offered
    respite care

Information and dialogue
Community care
Availability of further support
Carer support
Source NHS West Midlands review of evidence
from Sweden, Australia and Canada Investing for
Health, NHS West Midlands
40
The elderly population is growing at a faster
rate than other segments, which will in time
create a shortage of carers
12
West Midlands population by age group, 2005 and
2029, of total
2005
2029
0-4
5-15
16-44
45-64
65-74
Within this group, the 85 population will double
to 2029
75
2005 figures are 45-64M/59F and
65M/60F-74 Source National Statistics
41
Many older people do not have realistic options
for home-based care and so support is required
12
BBCHA EXAMPLE
Pensioner-only households, selected local
authorities, 2001, of all householders
Lone pensioner households
  • Majority of end-of-life care needs are amongst
    pensioners
  • This group has large numbers of elderly people
    living alone
  • Around 30 of palliative care therefore needs to
    be provided to individuals with no carer
  • Some form of support is therefore required

2 pensioner households
7
18
Sandwell
6
Birmingham
15
6
Solihull
19
18
BLT
6
Source Oncology palliative care for the BBCHA
PCTs, Dr Khesh Sidhu
42
Carers experiences indicate that support is not
always adequate
At the end, Stephen wanted to die at home, and
the GP sent some nurses to help us, but they
didnt know how to give Stephen the drugs. I
lost confidence that he would be OK at home, so I
called an ambulance and we went to hospital. The
doctors and nurses varied so much in how they
related to us. Some of them were fantastic, but
some wouldnt even make eye contact with me when
I asked for help. Some of them acted as if we
were not there
My husband Tony was dying of cancer, and I
wanted to look after him at home. He just got
weaker and weaker, and then just wanted to sit in
the chair. It was really hard for me to help to
lift him to help him walk to the toilet. I
didnt want to ask my daughter to help I didnt
want her to see her father like this. I got very
tired, and Tony was admitted one night by the on
call doctor because I was crying, I couldnt
clean him up anymore. The hospital was really
nice to him, but he wanted to come home. The
hospital arranged for someone to come and see
what equipment he needed, but it took 2 weeks,
and Tony became very depressed on the ward...
The district nurse was fantastic, but she
couldnt get me help at night. I was just afraid
to be on my own when he died, I didnt know what
happens if he has pain, or how I could get a
doctor there quickly
Source Business case for redesign of end of
life care, Birmingham East and North PCT,
September 2007
43
This section therefore examines 4 aspects of the
case for change in end of life care in the West
Midlands
  • End of life care system is not always
    co-ordinated and seamless
  • Options for patients dying from conditions other
    than cancer can be limited
  • Carer support is not always adequate and carers
    may not be available
  • Hospices would be the answer for some cases but
    access to hospices varies significantly across
    the region, and is more challenging in areas with
    high deprivation

44
Although some preference for hospice deaths is
based onthe inadequacy of care provision at
home, areas without hospice access see unmet
demand
26
BBCHA EXAMPLE
Shortfall () or excess (-) in preferred vs.
actual death in hospice, cancer patients, pts
19962002
Burntwood, L. T.
Heart of Birmingham
North Birmingham
South Birmingham
Eastern Birmingham
Rowley Regis and Tipton
No hospice present in PCT at date of survey
Oldbury and Smethwick
Wednesbury and W Bromwich
Solihull
Source Oncology palliative care for the BBCHA
PCTs, Dr Khesh Sidhu
45
The absence of accessible hospice provision can
clearly be seen to have an effect on the location
of death of local residents
BBCHA EXAMPLE
Postcodes of cancer patients who died at home or
in hospital, 19962002
Deaths in BBCHA hospices were less frequent in
areas further from a hospice
. although the Sutton Coldfield areas was partly
provided for outside BBCHA
Dot death from cancer in hospice other than St
Giles Hospice Triangle hospice location
Dot death from cancer at St Giles
Hospice Triangle hospice location
Source Oncology palliative care for the BBCHA
PCTs, Dr Khesh Sidhu
46
Contents
  • Executive summary
  • Current situation
  • Challenges facing the West Midlands health system
  • Current situation in end of life care
  • Case for change
  • Vision for the future

47
This section looks ahead to the future for the
West Midlands
  • A potential vision for the future has been
    articulated
  • Examples of good practice and innovation exist
  • There are therefore several questions about the
    future direction for the clinical group to
    consider

48
A potential vision for the future has been
articulated
FOR DISCUSSION
  • Focus on early intervention for patients with
    long term conditions and at the end of life to
    ensure
  • High quality patient care is delivered as close
    to their own home as possible
  • An emphasis on self care and informed patients
    being true partners in their own care
  • Development of a skilled and flexible workforce
    that is equipped and supported to provide
    high-quality integrated care in the community
  • Support patients at the end of life to die in the
    setting of their choice, with a marked shift
    towards patients being supported to die outside
    of hospital

Source Investing for Health, NHS West Midlands
49
This vision would depend on at least 4 streams of
work
FOR DISCUSSION
Capacity planning driven by demand data
  • Capacity planning work building on
  • New pathways of care and models of service
  • Demand data to underpin this e.g., demography
    and long-term conditions
  • Informed dialogue between patients, carers and
    clinicians based on
  • Move away from mindset that success equals cure
  • Recognition of end of life phase of disease
  • Earlier discussions about choices
  • Dialogue amongst staff on approach to end of life
    care

Informed dialogue
Community networks
  • Development of community networks that have a
    compassionate response to loss and dying
  • New metrics and methodologies to ensure
    high-quality end of life care

Tracked quality of care
Source NHS West Midlands End of Life Care
50
Example (1) The Pan-Birmingham Palliative Care
Network has developed an enablement model to
guide planning for end of life care, showing that
self-care and community and generalist care are
the most important
Patient and Carer Self Help
  • Information
  • Patient diary
  • Support for carers, education for carers
  • Personal care
  • Community drugs and advice
  • Spiritual support and befriending
  • Support for dependants
  • Key workers
  • Advocates

Voluntary and Community Support Pharmacies Shelter
ed Accommodation
Primary CareDistrict Nurses Case
Managers Primary Health Care Trusts Out of Hours
Providers
  • Monitoring patients and carers
  • Clinical care 24 hours clinical care and advice
    for patients
  • Orchestrating care
  • Key workers
  • Core team reducing tears for patients and carers
  • Supportive care packages working with hospice
    teams partnership links and supportive care
    beds
  • Provide personal care, bathing, eating, shopping
    and cleaning

Nursing/residential homes, home care teams,
social care
  • Out of hours drugs and advice
  • Education for hospital staff
  • Liaison with Specialist Palliative Care and
    Primary Care
  • Support and advice for patients in crisis and
    emergency situations
  • Clinical care

Acute Hospitals/Units, Ambulance Trusts
Specialist palliative care hos-pices teams
  • Specialist Centre for Cancer and nominate non
    cancer specialty
  • Day care
  • 24 hour clinical advice and support for
    professionals
  • In patient beds
  • Treatments for most complex
  • Education for rest of triangle partners and non
    cancer spatiality partners

Source Pan-Birmingham Palliative Care Network
51
Example (2) The Supportive Care Pathway is an
integrated approach to care being rolled out to
the West Midlands(1/2)
Supportive Care Pathway structure and content
Generic ICPmethodology
Supportive Care Pathway (SCP)
Plan of expected clinical care
  • It is a holistic document which contains prompts
    to ensure all aspects of care are addressed, both
    in an initial medical and nursing assessment and
    a daily assessment sheet. It also contains
    prompts to ensure adverse events are planned for,
    including imminent death. It encourages daily
    review of all medications and other treatments

Along a timeline
  • Entry criteria to the pathway have been
    developed. Those not expected to survive the
    episode of care are placed on it immediately.
    Those with a life-limiting illness (as described
    above) who are admitted following an acute
    episode, who, though not terminal, are not
    expected to survive the next 12 months, are
    considered for inclusion after 48 hours, when the
    initial acute problem has been dealt with

It is a multidisciplinary document
  • There are prompts within both the initial
    assessment and the daily sheet to invoke the help
    of other health care professionals, including
    physiotherapist, dietician, occupational
    therapist and speech and language therapist. All
    appropriate members of the multidisciplinary team
    are involved in the decision to consider
    commencing a particular patient on the pathway.
    This, however, must include a senior member of
    staff

It forms the actual clinical record
  • The pathway is the core documentation for that
    episode of care. Al staff involved in that
    patients care, including out of hours staff or
    those asked for specialist advice, should write
    it. However, other documents can be added to it
    e.g., manual handling assessment, nutritional
    screening tool, locally agreed drug algorithms.
    This is a decision that can be made individually
    for each clinical area

Integrated care pathway Source The
development of an Integrated Care Pathway for all
patients with advanced life-limiting illness
the Supportive Care Pathway, Main et al., Journal
of Nursing Management, 2006
52
Example (2) The Supportive Care Pathway is an
integrated approach to care being rolled out to
the West Midlands (2/2)
Supportive Care Pathway structure and content
Generic ICPmethodology
Supportive Care Pathway (SCP)
It incorporates evidence-based guidelines
  • The pathway has been informed by a number of
    national initiatives. These include the end of
    life ones described above (LCP, GSF, PPC), but
    also Essence of Care, the NSFs for older people,
    long term conditions, coronary heart disease and
    renal, all which can be found on the Department
    of Health website (http//www.dh.gov.uk)

It is a systems to review performance
  • Prior to implementation and audit of
    documentation of care was undertaken in the pilot
    sites. As pathways are completed they are
    audited using the same audit tool to monitor and
    review the use of the pathway

It should be able to cross organisational
boundaries
  • At present the pathway is implemented only in
    elderly care wards. However, there are plans to
    implement within an oncology ward in the same
    organisation and a renal ward in an acute Trust
    in another part of the city

It is never cast in stone and is and
evolutionary and dynamic tool
  • The documents is continually being revised and
    amended. While initially it was given out for
    wide consultation within the organisation, the
    present is now just revised by those in the pilot
    sites who have helped to improve the document in
    terms if clarity and ease of use

Integrated care pathway Source The
development of an Integrated Care Pathway for all
patients with advanced life-limiting illness
the Supportive Care Pathway, Main et al., Journal
of Nursing Management, 2006
53
Example (2) Initial audit results have been
positive
62
Pre-pathway
Completed pathway
Initial audit results for SCP
in notes
in notes
Patient
Communication understanding of prognosis
Carer
Co-ordination of care evidenceof
multidisciplinary working
Control of symptoms symptoms assessed at least
daily
Pain
Spiritual needs
Spiritual needs assessed
Continuity informa-tion given after death
Contact details know if deterioration
Choice place of carediscussed with the
family/carer
Necessary tasks to beundertaken
Bereavement support
Note Pilot in 2 elderly care wards 1 acute in
general hospital and one rehabilitation in
community hospital. Audit is retrospective only
and pertains to documented care assumptions
should be avoided about care actually
given Source The development of an Integrated
Care Pathway for all patients with advanced
life-limiting illness the Supportive Care
Pathway, Main et al., Journal of Nursing
Management, 2006
54
Example (3) Birmingham East and North PCT has
identified the gaps in its local area and
developed a business plan to address them
  • Current service

Gap to be addressed
Area (examples)
Patient information
  • Ad Hoc delivery of information to those patients
    and carers who are able to ask questions
  • All carers and patients should be well-informed
    about their condition and choices during the EoLC
    phase

Patient choice
  • Limited choice as service driven by crisis
    admission
  • Patients should be offered choice of care in
    different locations including at home wherever
    possible

Supportive care
  • Very limited for non-oncology patients
  • Includes access to holistic therapies, support
    groups and counselling
  • Limited access to physiotherapy and occupational
    therapy services in some areas
  • Consistent delivery of supportive care to all
    patients and their carers during their end of
    life care phase

GP and district nurse involvement
  • Varies according to local interest, capacity and
    capability
  • All District Nurses and GPs should be well
    informed about the EoLC pathways, care plans and
    current status of all patients

Monitoring of disease progression
  • Limited and ad hoc depending on clinicians
    involved and their interest and workload
  • Proactive, regular approach to ensure early
    interventions to avoid unnecessary hospital
    admissions

Source Business case for redesign of end of
life care, Birmingham East and North PCT,
September 2007
55
Example (4) Bridges Support Service supporting
people living with cancer and palliative care
needs
4,100
Achievements
Overview
Support provided 2006/07
  • On a partnership model, Bridges provides and
    accesses support for patients and carers as
    outlined in NICE (2004) guidance
  • Support tailored to individual needs
  • Provides appropriate information to enable people
    to make informed choices
  • Provides additional support to maximise quality
    of life at home
  • Acts as advocates to enable individuals to access
    services and support.
  • Supports carers in their main carer role
  • Provides transport for patients to attend and
    complete cancer treatment

389
Home visits
1,626
Telephone support
5,041
Domestic care support
167
Respite care
Voluntary transport
4,100
Source Bridges Support Service
56
Next step Questions for the clinical groups to
consider
  • What is the right vision for the future?
  • How should stakeholders outside the NHS best be
    engaged and involved?
  • How can patients with diseases other than cancer
    best be supported?
  • What are the biggest challenges? How can they be
    overcome?
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