Draft initial findings

JSNA Long Term Conditions Across the Lifecourse

19th May 2015

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

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?

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

Quantitativedata

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?

Local ViewsLiving 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?

Local ViewsCaring 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.’

• 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 ViewsUsing the health and care system

Local ViewsOther 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’

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’

• 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?

LTCs in the population: MultimorbidityMultimorbidity 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).

• “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: Multimorbidityincreases with age

• 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: MultimorbidityOnset earlier for lower SES

LTC Data

National survey

Local survey

GP records

Hospital admissions

Health indicator

dataMortality

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

• 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

For local data see JSNA report or JSNA summary slides, July 2015

Local data analysis - findings

LTCs in the population: limitation

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

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.

So how do we provide health and care for people in Cambridgeshire with LTCs?

House of Care, King’s Fund

The high risk designation is not static There are a range of ways of identifying high risk patients:

1. Clinical experience2. Use of thresholds 3. Predictive modelling4. 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 managementIdentifying high risk patients e.g. diabetes

10 HIGH IMPACT CHANGES

1. Avoid disruption to the usual care setting2. Identify complex needs as early as possible3. Agreed triggers and timely assessment4. Effective multidisciplinary working 5. Proactive discharge planning6. Rapid systems of escalation 7. Responsive long term care8. Focus on the data for complex care9. 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 managementPreventing escalation in needs: overview

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-ADMISSIONSSystematic 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 managementPreventing escalation in needs (1)

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 managementPreventing escalation in needs (2)

PREVENTING ADMISSIONS TO CARE SETTINGSKey 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 managementPreventing escalation in needs (3)

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 managementPreventing 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)

• 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 managementLocal assets – identifying those at risk and preventative

interventions

Referral to Community MDT (total 282)

Admission Avoidance DES Register (total 361)

3554

139133

2 8

170

System One: Electronic Frailty Index >0.33 (total 340)

• 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

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 difficultiesLiddy 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

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

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