Long Term Conditions across the Lifecourse - JSNA Key Findings Evidence 19 May 2015

1. Draft initial findings
JSNA Long Term Conditions Across the
Lifecourse
19th May 2015

2. What is the focus of this work?
The population with long
term conditions (LTCs)
- People may fall into a
variety of levels
- Evidence suggests that
they move between
levels
Significant focus on most
complex (top 1-2%)
Scope to focus on ‘high risk
patients with LTC’
Professional
care
Self care

3. What are we seeking to achieve?
• Long term conditions (LTCs)… inclusive definition
• What’s in scope? – adult-onset, living in the
community, potentially at high risk of poor health
outcomes
• What do we mean by high risk?
• What do we mean by ‘poor health outcomes’?
– Triple aim/ triple fail…
• And what are we going to do about that?
– Prevent an escalation of health and care needs?

4. How have we collated information?
• LTCs across the lifecourse: risk factors and inequalities
• LTCs in the population: characteristics of those at high
risk of poor health outcomes
• LTCs in Cambridgeshire: describing the population at
high risk of poor health outcomes
• Care management for the population with LTCs at high
risk of poor health outcomes
• Supporting self-management for LTCs
• Local views on improving care for people with LTCs Qualitative
data
Literature
reviews;
policy and
local assets
Evidence
reviews
Quantitative
data

5. What do we know?
• Description of the population living with LTCs in Cambridgeshire
– In particular, who is living with multiple conditions?
– Including limitation or mental illness…
– What do we know about them?
• Evidence about multimorbidity, limitation, pain and mental ill health
– What do we know about these conditions and their co-existence?
• Local views from people with LTCs and their carers
– Challenges they face; opportunities for local solutions
• Care management – what is the evidence about identifying people within
the population, and models of effective care?
– Including supporting self-management
• Local assets
– What do we already have in place?
What is this telling us?
What have we looked at?

6. Local Views
Living with multiple conditions
• It is tiring and very hard work… ‘it gets in the way of living your life’
• Variability in health and function from day to day ‘there is an element of variability of
the condition. I find that people do not understand the variability – you can go from
being reasonable to a few weeks later you need help...If I was on my own – not sure
how I would cope’
• Pain ‘pain is not recognised’; ‘pain management is over on its own’
• Emotional impact – stress and loneliness ‘no one ever talks to you about your mindset’
• Little things can have a big impact ‘if I get poorly it takes me ages to get better again’
• Medication – side effects of multiple medications and alterations in medication can
have significant effects ‘I have to have special prescriptions, and then on the grounds of
the economy, it’s actually [happened] twice, ‘higher up’ interferes and insists I go on the
normal one… my own doctor she was very very cross that she wasn’t contacted at all,
but the result is that is made me so ill… I had the worst allergic reaction I’ve had for
about ten years’
• Not knowing where to get information ‘no one tells you – this is where you can go to
get help’…
• Not feeling expertise is respected by healthcare professionals ‘the conditions may be
the same, but we are all different and our experience of our conditions may be unique
to us’
What have we found?

7. Local Views
Caring responsibilities
• Balancing caring responsibilities with own health issues ‘who is taking my needs into
account?’
• Ongoing strain ‘the thing that keeps me awake at night is what if I get ill or can’t look
after him?’
• Having to manage complex choices and decisions ‘It is like having lots of balls in the air.
Most of the time you can keep them up in the air but they are fragile. They are fragile
because health and social care do not work well together’
• Not feeling expertise is respected by healthcare professionals ‘If the doctor comes in
during that period of time [when cared for is doing ok] they assume that is the norm
and they look at you as if you are making a fuss out of nothing. They go off and if you
phone them the next day regarding issues – they may say she was alright yesterday. I
say, well, she is not now.’

8. • Lack of care-coordination for multiple conditions
‘you may have multiple appointments, multiple tests (blood tests etc.) and even multiple
medications and treatments – but no one appears to be coordinating the clinical care you
receive’
– Multiple medication ‘you can have wonderful medication but then to find out that
one works against the other – but who is going to find that out for you? Because
your GP doesn’t want to know, the pharmacist doesn’t, the specialist is busy –
which one is going to solve that, that there might be something wrong?’
• Timeliness of assistance ‘you just don’t know from one day to the next just what you’re
going to wake up with’… ‘it’s also accessing those services, because there’s a wait for
that – if you need anything then you wait for that service – somebody’s got to refer you,
somebody’s got to ring…’
• Inflexibility ‘if you suddenly find you need something to help you, say, wash, or get up
from the toilet, …how do you get that out in the community? I know people with MS
who have needed equipment and have actually gone to hospital and been admitted to
hospital because they then get the equipment’
• Roles of healthcare professionals ‘the core difficulty is communication’
Local Views
Using the health and care system

9. Local Views
Other challenges and impacts
• Independence at home ‘often those with declining health have to start rationing
where there efforts go… housework, cooking, cleaning, socialising…’
• Getting out and about ‘[for wheelchair users] Long term car parks, where you have
to go back to the car to the [blue] badge in order to pay, some people struggle as
they have to transfer into the car to get the badge, then transfer from the car to the
chair, so that they can go back [and pay]. They didn’t talk to users before they
decided on the service’
• Employment and finances ‘depressing to give up a job you enjoyed’
• Information about what’s available ‘but you’ve got to know what’s there and you’ve
got to go and get it’

10. Local Views: Solutions?
• Being listened to and expertise recognised ‘you go along to the Consultant and it’s
“what can I do for you” And then, it’s well, you are give some information, and “well
you can do this, this or this, what do you want to do?”’
• Single point of access ‘one number you call for help, available and weekends… to get
some advice and some support to stop you going to hospital’
• Care coordination ‘a person centred plan enables difficult discussions to
happen…people to talk about practical things… who is important to you? their
relationship? Those caring roles should be captured’
• Timeliness and flexibility ‘you get around the appointment system if the need is
urgent, because you have to get an urgent appointment’

11. • Care and support from health staff
– ‘my pharmacy are brilliant, I’ve used them for a long time’
– ‘some sort of nurse, would be really helpful, that could, sort of, take you across all
the services’
– ‘my GP is wonderful, my GP does most things’
– ‘I get regular physiotherapy and that’s a great help. It’s just an understanding of
how to cope… and it’s managing your pain, knowing your limitations’
• Information about what support is available ‘help with jobs around the house and
garden’
• Self-management support ‘running your own care’
– Coping, mindfulness etc. ‘you learn skills that stay with you’
– Support groups/ family/ neighbours etc. ‘Facebook groups and online media’
Local Views: Solutions?

12. LTCs in the population: Multimorbidity
Multimorbidity definitions vary….
• Multimorbidity, the simultaneous presence of multiple health conditions
where no one condition is identified as an index condition
• Clustering of conditions (may be concordant or discordant)
Measuring Multimorbidity - methodological issues e.g.
• Which conditions are included?
• How conditions are defined?
• How many conditions are included e.g. 2+, some 3+, or counts?
Treating Multimorbidity ?
• NICE guidance only available on individual conditions. Multimorbidity
guidance in development (due 2016).

13. • “Multimorbidity is the norm in those aged 65 and older” (Violan 2014,
systematic review of 39 studies)
• Number of conditions increases with age (Kasteridis 2014)
Kasteridis 2014, CHE, York
LTCs in the population: Multimorbidity
increases with age

14. • Higher level of multimorbidity associated with socioeconomic status (SES)
(Violan 2014, systematic review)
Barnett 2012
• Onset of multimorbidity
occurred 10–15 years
earlier most deprived areas
• People living in deprived
areas were much more
likely to have chronic
obstructive pulmonary
disease, depression, and
painful disorders as
comorbidities than other
disorders (Barnett 2014)
High SES
Low SES
LTCs in the population: Multimorbidity
Onset earlier for lower SES

15. LTC
Data
National
survey
Local
survey
GP records
Hospital
admissions
Health
indicator
data
Mortality
Social care
data
Primary
research
Qualitative
data
Variable data
sources provide
information on
different aspects
of LTC
We are using:
• Health
Survey for
England
• MRC CFAS
II research
data
• QOF…
We are collating:
• Estimates on
numbers with
multimorbidity
+/- limitation
+/- mental illness
and their
characteristics
Data: the LTC population in
Cambridgeshire

16. • Looking to understand and describe the extent of and overlap with
Multiple Conditions, Limitation, Mental ill health issues, and pain
• For 65+ population able to use a subset of the MRC CFAS II dataset
– Random sample of 7,796 people aged 65+ from Cambridgeshire
population interviewed
– In terms of LTC, selected conditions (vascular), MH uses AGECAT (focus
on anxiety and depression)
• For 16-64 using Health Survey for England (2012)
– All conditions (incl MH) and MH by GHQ4
• ‘Limitation’ from a similar question in both surveys
– do you have the/a condition
– does this affect your day-to day activities etc
Local data analysis - introduction

17. For local data see JSNA report or JSNA summary
slides, July 2015
Local data analysis - findings

18. LTCs in the population: limitation

19. LTCs in the population:
depression and anxiety
 Emerging evidence for mental health strategies within LTC care pathways
 Some interactions being particularly researched e.g. diabetes and depression

20. Care management: Overview
• The premise of ‘care management’ is the idea that the health system can
intervene with ‘high risk’ patients to prevent or reduce the likelihood of
future adverse outcomes.
• Adverse outcomes could include the preventable progression of the
condition, deterioration of quality of life, development of complications,
increase in health or social care service use, or emergency hospital
admission.
• By targeting these individuals with an enhanced level of care, or an
intervention, we would hope to improve management of their condition(s), in
part by enabling better self-management, which will prevent or slow
escalation of their condition(s) and the development of complications.
• This will improve quality of life and the health experience of patients, while
also reducing costs and demand for more expensive health services.

21. So how do we provide health and care for
people in Cambridgeshire with LTCs?
House of Care, King’s Fund

22.  The high risk designation is not static
 There are a range of ways of identifying high risk patients:
1. Clinical experience
2. Use of thresholds
3. Predictive modelling
4. Patient activation
 All models have strengths and limitations
 The ethics of identifying patients for a particular intervention or service are similar to the
criteria set out for screening programmes
– The adverse event should be an important health problem;
– The natural history of the adverse event should be adequately understood by the organisation
offering the preventative intervention;
– An accurate method should be available to identify high risk patients
– There should be sufficient time for intervention between identification as high risk and the
occurrence of the adverse event.
– The intervention offered to high risk patients should be accepted, acceptable and cost-effective;
– Resources and systems should be available to identify and intervene appropriately
 e.g. there is potential for risk identification for care management among people with diabetes,
however the overall merit depends on the availability of an accepted, acceptable and cost-
effective service offering.
Care management
Identifying high risk patients e.g. diabetes

23. 10 HIGH IMPACT CHANGES
1. Avoid disruption to the usual care setting
2. Identify complex needs as early as possible
3. Agreed triggers and timely assessment
4. Effective multidisciplinary working
5. Proactive discharge planning
6. Rapid systems of escalation
7. Responsive long term care
8. Focus on the data for complex care
9. Integrated services and effective partnerships
10. A workforce designed to serve complex needs
Continuing NHS Healthcare National Programme (2010).
Ten High Impact Challenges for Complex Care.
Care management
Preventing escalation in needs: overview

24. PREVENTING HOSPITAL ADMISSIONS
Interventions shown to be effective at
reducing admissions (Kings Fund 2011)
• Continuity of care with a GP
• Hospital at home as an alternative to
admission
• Assertive case management in mental
health
• Self-management
• Early senior review in A&E
• Multidisciplinary interventions and tele-
monitoring in heart failure
• Integration of primary and social care
• Integration of primary and secondary
care
REDUCING RE-ADMISSIONS
Systematic review (Preyde et al. 2011) identified
risk factors associated with adverse outcomes in
older patients discharged from hospital to home:
• Poor cognition
• Multimorbidity
• Length of hospital stay
• Prior hospital admission
• Functional status
• Patient age
• Multiple medications
• Lack of social support
Structured discharge planning and
personalised health care programmes
• There is strong evidence that an individualised
discharge plan for hospital inpatients is more
effective than routine discharge care that is
not tailored to the individual.
Care management
Preventing escalation in needs (1)

25. A King’s Fund Delphi study panel identified key interventions to reduce admissions:
• Direct delivery of rapid access care in the community
• Access to rapid response nursing and social care at home
• Intermediate care and acute nursing home beds
• Mental health crisis teams
• Rapid access specialist clinics
• Increased nursing home capacity for acute illness.
 It is important to emphasise that not all admissions are bad. Hospital care is often
inevitable and appropriate
The ideal model to reduce escalation of need would need to allow for immediate
urgent care to be given, enable those who need admission to be correctly identified
and facilitate systems to appropriately manage those who can be managed in an
ambulatory setting to be managed in the community.
Care management
Preventing escalation in needs (2)

26. PREVENTING ADMISSIONS TO CARE SETTINGS
Key risk factors for care home admission include:
• Age, sex, ethnicity
• Deprivation
• Morbidity
• Health service use
• Drugs prescribed
• Patterns of social care needs and usage
• dementia/cognitive impairment
• Activities of daily living (ADL) restriction
• Number of family members,
• Use of day services.
• People living alone, in particular, older men
without partners despite lower levels of
disability than lone older women.
 All of these factors are potentially open to
‘upstream’, preventive intervention.
However, it is still unclear, how, when or
where best to invest.
Oxfordshire County Council and the Institute of
Public Care reviewed pathways finding that
certain conditions and experiences were
particularly prevalent and led to admission to care:
• Urinary incontinence 45%
• Dementia 40%
• Bowel incontinence 34%
• Depression 25%
• Visual impairment 21%
• Stroke 19%
• Diabetes 17%
• COPD 6%
• Learning disability 2%
 Most people going into care homes do have
high levels of need, however, lengthy periods
of deterioration often coupled with a service
interface with social care and health suggests
that there are likely to be opportunities
earlier along the pathway to support people
to remain independent longer.
Care management
Preventing escalation in needs (3)

27. from Kerslake (2015), Institute of Public Care
• Escalation of health and care needs happens
in steps
• Focus should be on preventing specific
events occurring or managing the impacts of
those specific events if they are
unpreventable
• There are a set of factors that are most
commonly associated with care home
admission, e.g. incontinence, dementia,
stroke, social isolation, and there exists
substantial literature about what good
support for people with these conditions
looks like
• There were services based on good
evidenced practice available – but people
had not used them.
• The first principle of good care management
… getting the right services to the right
people
• IPC suggest a three-tiered model …
Care management
Preventing escalation in needs (4)
1. Services that seek to support a person’s lifestyle
and engagement with their community.
(LIFESTYLES)
2. Integrated services that seek to maintain a
person within the community. (MAINTENANCE)
3. Targeted interventions that aim to restore a
person back to a preceding state of health and
well-being. (REHABILITATION)

28. • Health & Wellbeing Network - Pilot project – Isle of Ely
– Reaching those with an elevated frailty score but not actively
case managed by practice team/MDT
– Health & Wellbeing Network; Care Network Cambridgeshire
– Most respondents had simple needs (befriending, shopping,
transport, handyman, security, etc.).
– A small number were referred to support providers for in
depth assessment.
• UnitingCare neighbourhood approach
• Other local assets
Care management
Local assets – identifying those at risk and
preventative interventions
Referral to
Community MDT
(total 282)
Admission
Avoidance
DES Register
(total 361)
35
54
139
133
2
8
170
System One:
Electronic Frailty
Index >0.33
(total 340)

29. • Self-management (or self-care):
‘the care taken by individuals towards their own health and well being: it comprises the
actions they take to lead a healthy lifestyle; to meet their social, emotional and psychological
needs; to care for their long-term condition; and to prevent further illness or accidents’.
• self-management support itself can be viewed in two ways:
as a portfolio of techniques and tools to help patients choose healthy behaviours; and as a
fundamental transformation of the patient-caregiver relationship into a collaborative
partnership (de Silva 2011).
• Types (PRISMS study):
 Education/training for providers
 Education/training for patients/carers
 Decisions support
 Monitoring and feedback
 Environmental adaptations
 Care or action plans
 Exercise
 Psychological Support
 Financial interventions
Supporting self-management:
overview

30.  Systematic reviews of quantitative and qualitative evidence on self-management support…
NIHR 2014: PRISMS
• inseparable from high-quality care for people with LTCs
• must be tailored to the individual, their culture and beliefs, and the time point
NIHR 2014: RECURSIVE
• associated with small but significant improvements in Quality of Life, with the best evidence for
diabetes, respiratory disorders, cardiovascular disorders and mental health
• Only a minority of studies reported reductions in health-care utilisation
• Impact of interventions on utilisation (e.g hospital admission) may overstate the impact on total costs
• Authors’ view: ‘patients with multimorbidity potentially face significant barriers to self-management
support, but may also have the greatest capacity to benefit’.
Smith 2012: Managing patients with multimorbidity: systematic review of interventions
• Mixed results although a trend towards prescribing and drug adherence
• Interventions more likely to be effective if focussed on particular risk factors, or functional difficulties
Liddy 2014: Challenges of self-management when living with multiple chronic conditions
• Synthesis highlighted themes including physical and emotional symptoms, pain and depression.
• The use of cognitive strategies was positive; patient perspectives were linked to common functional
challenges
 Emerging evidence for role of self-management support interventions for multimorbidity –
expert opinion is they are likely to be even more important…
 Impact may be on quality of life and patient outcomes more than utilisation
 Potential focus on functional challenges, emotional symptoms and coping strategies
Supporting self-management:
Evidence for interventions

31. Supporting self-management:
Tailoring support & local assets
• Supporting self-management is an integral
part of person-centred care
– Changing relationships between people and
health and care services
• Resources:
• RCGP programme on ‘Collaborative Care and Support planning’
• Coalition for Collaborative care
• Health Foundation ‘co-creating health’
• Centre for self-management support at Addenbrooke’s
• Local support groups

32. And what is this telling us…?
DRAFT CONCLUSIONS
• Sizeable population living with multiple conditions
• Important levels of limitation in this population
• Evidence about preventative interventions to reduce
admissions and re-admissions to hospital
– Coordinated, multi-disciplinary, and timely features
• Self management does improve patient outcomes
– Lower impact on utilisation?
– Lack of evidence about multiple conditions - opportunity for
innovative practice?
• Improving care is about person centred care … and
professional-person interaction
• Vital need for appropriate support for carers