Long Term Conditions Strategy 2021-2025 - Supporting people to live well longer - NHS East and ...
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Long Term Conditions Strategy
2021-2025
Supporting people to live well longer
Authors:
Dr Hannah Brayford, Clinical Fellow, ENHCCG
Emily Byway, Project Manager, ENHCCG
Gloria Graham Davidson, Project Support Officer, ENHCCG
Emma Hollingsworth, Programme Manager, ENHCCG
Dr Lucy Kempster, Clinical Fellow, ENHCCG
Dr Sam Williamson, Associate Medical Director, ENHCCG
Page 1 of 32
Page 2 of 32
Page 3 of 32
CONTENTS PAGE
PAGE SECTION
5 1. Introduction
8 2. Background
14 3. Preventing Long Term Conditions and Co-Morbidities
17 4. Identification, Diagnosis and Staging
18 5. Living with a Long Term Condition – a Proactive Approach
24 6. Managing Multi-morbidities
26 7. Palliative and End of Life Care
27 8. Conclusion
28 Appendix One: Implementation Plan
ACRONYMNS
BAME Black, Asian and Minority Ethnic IMD Index of Multiple Deprivation
BMI Body Mass Index QOF Quality Outcome Framework
BP Blood Pressure LTC Long Term Conditions
CHD Chronic Heart Disease MDT Multi-Disciplinary Team
COPD Chronic Obstructive Pulmonary NHS National Health Service
Disease
DNACPR Do Not Attempt Cardiopulmonary NICE National Institute for Health and
Resuscitation Care Excellence
ENHCCG East and North Hertfordshire Clinical ONS Office for National Statistics
Commissioning Group
GOLD Global Initiative for Obstructive Lung PHM Population Health Management
Disease
GP General Practitioner STP Sustainability and Transformation
Partnerships
IAPT Improving Access to Psychological SMI Serious Mental Illness
Therapies
ICP Integrated Care Partnership UK United Kingdom
IDAOPI Income Deprivation Affecting Older
People Index
Page 4 of 32
1. INTRODUCTION
“The increasing prevalence of long term conditions is the biggest
challenge facing the NHS now and in the future”
Miles Ayling, Director of Innovation and Service Improvement
- Department of Health1
The NHS Long Term Plan (2019) identifies the need for the NHS to move to “a new service model in
which patients get more options, better support, and properly joined-up care at the right time in the
optimal care setting”.2
Although both locally and nationally the number of patients with one long term condition has
remained fairly static over the past few years, there is growing concern about the rising number of
people with multiple long term conditions. It is estimated 15% of patients in East and North
Hertfordshire have more than one long term condition and so joined-up care is becoming a greater
priority for patients.
The current health and social care systems are fragmented, often disease focused and care is not
always person-centred in a way that allows individuals to become involved in decisions about their
care. The model of care needs to move away from a disease specific model to a more holistic
approach, taking into account all existing conditions, “risk of” conditions and the wider determinants
of health that can impact on an individual.
The COVID-19 pandemic presented an unprecedented challenge to the NHS. There is now a
proportion of patients that will require long-term care as a result of COVID-19 and a significant
volume of patients with delayed care and unmet needs. However the pandemic has brought a new
focus to patients with long-term conditions and forced care to be delivered in different ways which
can be adopted post pandemic.
The purpose of this strategy is to pull together all recently published guidance and plans relating
to long term conditions to provide the CCG with a strategic direction that identifies how best to
develop a model of care that supports the prevention and management of long term conditions.
1
Department of Health (2012). Report. Long-term conditions compendium of Information: 3rd edition
2
NHS Long Term Plan
Page 5 of 321.1 Aim of the strategy
The aim of the strategy is to improve health outcomes, reduce health inequalities, value for money
and to reduce disease progression in long term conditions (LTC) in East and North Hertfordshire;
facilitating more stable baseline over a longer period of time. This is particularly relevant given the
impact of COVID-19 on healthcare services.
The strategy will support the move away from managing LTCs in silo and adopt a more proactive and
holistic approach to care based on individual need. A Population Health Management (PHM)
approach will be adopted throughout this strategy and implementation plan to ensure a needs led
and evidence based approach that appropriately identifies the needs of the population and designs
services around those gaps and requirements
1.2 Strategy Ambitions
Successful delivery and implementation of the strategy recommendations will impact both patients
and the wider healthcare system. The core strategy ambitions are;
Patients (and Carers)
To maintain and improve the quality of care provided to patients
To reduce inequalities in outcomes for key groups within the population
To improve the experience and safety of patients and carers
To increase the level of patient activation for people with a long term condition
To ensure that patients are enabled to manage their condition in their own home or close to
home.
To ensure patients receive coordinated and joined up care.
Healthcare System
To ensure there are appropriate interventions and services that support a patient in
preventing or managing an exacerbation of their condition
To reduce the number of emergency acute admissions and re-admissions (where
appropriate)
To reduce the length of hospital stay for patients with a LTC (where appropriate)
To upskill the healthcare workforce in managing LTCs
To ensure services provide value for money i.e. an optimum combination of cost, quality and
sustainability
To ensure services and initiatives are affordable
1.3 Delivering the strategy
To support the robust implementation of the strategy recommendations and to enable system
transformation, a multi-stakeholder and multi-disciplinary approach is required. An East and North
Hertfordshire Integrated Care Partnership (ICP) Board will be established with representation from
all key stakeholders. The Board will be responsible for the delivery of this strategy.
Page 6 of 321.4 Scope of the strategy
The NHS Long Term Plan, published in January 2019, identifies cardiovascular disease, diabetes,
stroke and respiratory as major health conditions which require further care. NHS Right Care (March
2020) further supports the opportunities of improvement in these areas as well as neurology.
The strategy will therefore focus on cardiovascular disease, diabetes, neurology and respiratory LTCs
within East and North Hertfordshire as a priority.
It is recognised there are additional LTCs. The general recommendations can be applied across
multiple conditions. The strategy recommendations can also be applied to post COVID-19
rehabilitation needs.
The strategy will deliberately not focus on specialist and high level mental health services; services
defined as planned care or urgent care; and conditions requiring immediate health care
interventions such as cancer. This does not diminish the importance of these services but there are
other programmes in place to support this work, including the Hertfordshire Dementia Strategy and
the Hertfordshire and West Essex STP ‘An Integrated Health and Care Strategy for a Healthier Future’
(2018). The challenge for the Long Term Conditions Board will be to ensure communication is
maintained between all key programmes.
The strategy will focus on the adult population (aged 18 years and over), with an additional focus on
BAME (Black, Asian and Minority Ethnic) communities to support the reduction in health
inequalities. The NHS Long Term Plan (2019) referenced that parts of the population, including
BAME communities, are at a substantially higher risk of poor health and early death compared to the
rest of the population. This inequality has further been emphasised by the impact of COVID-19 on
these communities.
The Long Term Conditions Board will collaborate with children’s commissioners to ensure transition
from paediatric to adult services is as seamless as possible for children with LTCs.
1.4.1 NHS Long Term Plan
The NHS Long Term Plan has been fundamental in framing this strategy and its recommendations.
The main objectives detailed within the NHS Long Term Plan are;
Transition the NHS to a new service model in which patients get more options, better
support and properly joined up care at the right time and in the right place
Strengthen the contribution to prevention and health inequalities
Establish priorities for care quality and outcomes improvement in the next decade
Tackle workforce pressures
Prevention is recognised as an important area whereby the NHS must complement the important
role already being undertaken by local government. A specific section has been included in this
strategy on prevention and its link to long term conditions.
Page 7 of 32By moving away from the management of patients through single unconnected episodes of care, an
integrated and more proactive health care system will provide better support and outcomes for
patients with long term conditions. This should be undertaken in conjunction with improving self-
management education and support and a Population Health Management approach applied to all
transformation projects.
Due to their prevalence and impact on patients and the healthcare system; cardiovascular disease,
respiratory, diabetes and neurological conditions are specifically referenced in the Long Term Plan.
We have taken the decision not to focus on recommendations for specific conditions, but identify
the commonality across long term conditions to support the transition to a new service model.
Finally the NHS Long Term Plan sets an ambition to expand IAPT services for adults and older adults
with common problems, with a focus on those with long term conditions. Integration of mental
health services with physical health services is an ambition of the local health economy and
therefore has been specifically referenced within this strategy.
1.4.2 COVID-19
The COVID-19 pandemic necessitated a rapid response by the health and social care system to
respond to the unprecedented demand for acute healthcare services. The re-structuring and
suspension of services supported the management of COVID-19 patients but has resulted in a
significant proportion of unmet need across the rest of the population.
As the system moves towards recovery, along with planning for potential COVID-19 waves, there is
an opportunity to embed some of those changes; to ensure the system remains flexible in its
delivery; can manage surge demand and capacity and effectively use available resources.
The third phase of NHS response to COVID-19 reinforced the importance of ensuring recovery is
planned in a way that inclusively supports those in greatest need, including those with long term
conditions. The acceleration of preventative programmes which proactively engage those at greatest
risk of poor health outcomes is essential, as is the consistent risk stratification of patients and a
stratified approach to service delivery to support ongoing management.
2. BACKGROUND
The NHS Long Term Plan (2019) recognises that LTCs are the biggest causes of premature mortality
and significantly impacts on a patient’s quality of life.
2.1 What are long term conditions?
“A long term condition (LTC) is a condition that cannot, at present, be cured but is controlled by
medication and/or other treatment/therapies”3
Long term conditions account for:
3
Department of Health (2012). Report. Long-term conditions compendium of Information: 3rd edition
Page 8 of 32 50% of all GP appointments
64% of all outpatient appointments
70% of all inpatient bed days – approximately 8 months of a year
In addition, around 70% of the total health and care spend in England (£7 out of every £10) is
attributed to caring for people with LTCs.4
Table 1: A table detailing the most common types of Long Term Conditions
DISEASE DESCRIPTION EXAMPLES
Diseases that affect the airways and lungs. Asthma
Chronic Obstructive
Respiratory Pulmonary Disease
Diseases that affect the heart and blood vessels. Coronary Heart Disease
Heart Failure
Hypertension
Cardiovascular Stroke
Atrial Fibrillation
Chronic Kidney Disease
Diseases that affect the network of glands in the Diabetes
body that produce hormones to keep cells and
organs functioning.
Endocrine
Diseases that affect the nervous system. Epilepsy
Parkinson’s Disease
Neurology Multiple Sclerosis
2.2 Who is most at risk?
People who are most at risk of developing a LTC are;
Individuals who already have a LTC
Individuals in lower socio-economic groups
Older people
People who are overweight, smoke, are physically inactive or who drink excessive alcohol
2.3 Local Context
East and North Hertfordshire has a population of around 610,000 people with healthcare provided
through a number of different organisations;
Primary Care: GP Practices and Pharmacies
Community Trust
Acute Trusts
Mental Health Trust
Hospices
Voluntary Sector
4
Ibid
Page 9 of 32 Public Health
The CCG is a patient-centred organisation. It aims to:
Work with patients, partners, managers and clinical colleagues from all sectors to
commission the best possible healthcare for our patients within available resources
Reduce health inequalities and achieve a stable and sustainable health economy by
working together, sharing best practice and improving expertise and clinical outcomes5
2.3.1 ENHCCG Population
Population Health Management will enable proactive understanding of patterns of admission and
will support the implementation of appropriate interventions. Key statistics for the ENHCCG
population are;
Life expectancy is above the national average for England; 84.1 years for a woman6
(compared to 83.1 years for England), 81 years for a man (compared to 79.6 years for
England)7.
59.8% of the East and North Hertfordshire population are aged between 20-64 years which
is in line with national statistics.
49,222 patients (2018/19 QOF Register) are recorded as obese. This is significantly fewer
than the estimated prevalence based on national statistics which states one third of adults
are obese and another third are overweight.
Nationally, 14.9%8 of adults are classified as current smokers and for Hertfordshire the
estimated prevalence is 12.7%9. For East and North Hertfordshire this would equate to
69,237 people (aged 16+).
90.3% of patients have their BP recorded in East and North Hertfordshire CCG, with 79.34%
receiving intervention for this (Public Health England). There is no metric for recording a
patient’s BP under the age of 45 years.
Although deprivation across the whole of Hertfordshire is lower than the national average
there are pockets of deprivation in East and North Hertfordshire.
87.6% of the total Hertfordshire population identified as White ethnicity within the 2011
census, whilst 12.4% identified as BAME. Whilst this data represents the whole of
Hertfordshire the proportion can still be applied across the East and North Hertfordshire
geographical area.
Nationally 5-8% of acute admissions to hospital are due to medication problems and up to
50% of patients do not take their medicines as prescribed
Please see ENHCCG Needs Analysis (2020) for further data.
2.3.2 Disease Prevalence
5
www.enhertsccg.nhs.uk/aboutus
6
Public Health England, Local Health Profiles (2016)
7
Ibid
8
2017 - Statistics on Smoking - England , 2018 - NHS Digital
9
Tobacco Control Strategic Plan for Hertfordshire - Public Health Hertfordshire
Page 10 of 32The Quality Outcomes Framework (QoF) for 2018/19 provided data relating to the number of
patients registered with a LTC condition in ENHCCG.
Table 2: Quality Outcomes Framework Disease Prevalence Table (2018/19)
Register Prevalence Hertfordshire
and West
Essex
Respiratory Chronic Obstructive Pulmonary 9,584 1.55% 1.55%
Disease
Asthma 35,475 5.86% 5.71%
Cardiovascular Atrial Fibrillation 11,630 1.90% 1.92%
Heart Failure 4,314 0.69% 0.77%
Hypertension 81,206 13.42% 13.41%
Stroke 10,032 1.61% 1.55%
Endocrine Chronic Kidney Disease 13,562 2.85% 3.15%
Diabetes 28,962 5.93% 6.15%
Neurological Epilepsy 3,516 0.71% 0.69%
*Please note this data is for diagnosed patients only and not all conditions are captured.
2.3.3 Emergency Admission
COVID-19 had a significant impact on non-elective emergency admissions to acute hospitals with an
unprecedented reduction during the peak of the pandemic. As attendances being to return to pre-
COVID levels the support to manage patients in the community and other care settings is even more
important.
NHS Right Care (2020) identified the CCG is an outlier amongst our peers for non-elective admissions
relating to respiratory, circulation and endocrine.
2.3.4 Mortality Data
Public Health Fingertips data (2013-15) confirms Hertfordshire is below the national average for
both preventable mortality and premature mortality in people under 75 years for cardiovascular
disease and respiratory (all persons). However there are opportunities for improvement at a local
level compared to similar CCGs.
NHS Right Care (2020) highlighted opportunities for improvement in mortality from respiratory
conditions under 75 years and mortality from CHD under 75 years.
2.4 The current model of care
Currently stable patients are managed in primary care with the option of onward referrals to
specialist community, secondary (acute) services and tertiary services if required.
Page 11 of 32This model of care means that if a patient’s condition deteriorates, their care is led by secondary
(acute) services and the patient can remain in specialist services for longer periods of time (Cycle A
to D) due to periods of instability. This is further impacted as management is not always cohesive
between different services. Patient education and patient self-management is not widely and
consistently embedded therefore the quality and impact of patient education is variable.
Figure 1: A diagram depicting the current model of care
2.5 The future model of care
As part of the ‘Integrated Health and Social Care Strategy for a Healthier Future’, Hertfordshire and
West Essex STP set out a blueprint for delivering integrated, good quality care for the area. The
vision is summarised in the following diagram and depicts the overarching principles this strategy is
trying to achieve;
Page 12 of 32Figure 2: Hertfordshire and West Essex STP Strategy Overview
The emphasis of transformation must be towards the integration of models of care that break down
the organisational boundaries that currently exist. A Population Health Management approach will
drive efficient commissioning by understanding and delivering services based on the needs of the
East and North Hertfordshire population.
Patient centred care, coordinated care, personalised care and services that are stratified and
responsive to the needs of the patient are prominent in the Hertfordshire and West Essex STP
diagram and must be at the core of LTC services. Importance needs to be placed on enablers such as
data, digital opportunities and wider organisations, such as charitable and voluntary sector to
support the delivery of transformation.
2.6 Patient Experience
(i) Patient/Carer Survey
The CCG developed an online survey to understand the local experience of people living with or
caring for someone with, a LTC.
55 people completed the survey; the majority of whom were aged between 56-70 years. 77% of
those who participated in the survey were patients whilst the remaining 33% identified as a carer of
someone with a LTC. In response to the question, “which long term condition(s) do you have?” the
responses were as follows;
Neurology: 21.15%
Diabetes: 23.08%
Cardiovascular: 11.54%
Respiratory: 23.08%
Page 13 of 32 Other: 61.54% (particularly mental health and pain-associated conditions)
(Please note patients had the option to select more than one long term condition)
When developing the strategy, The Healthwatch Hertfordshire survey, “The NHS Long Term Plan:
Views From Hertfordshire” (2019) understanding residents’ views and experiences was also
considered.
Respondents to the survey highlighted patients need timely access to help and treatment when
needed. People want to be able to stay in their home for as long as it is safe to do so.
Overall there is a need for greater access to treatment and support, as well as timely and consistent
communication.
(ii) Patient/Carer Co-Production Workshop
The CCG also held two Patient/Carer Co-Production Workshops;
January 2019: The first at the beginning stage of the Strategy development to obtain initial
feedback and experience that could be incorporated in the first draft of the strategy
October 2019: The second to review the draft LTC Strategy and obtain further feedback
regarding positive experiences, areas of concern and suggestions for improvement.
3. PREVENTING LONG TERM CONDITIONS AND CO-MORBIDITIES
Importance Addressing social determinants of health is key in protecting and
promoting wellbeing and healthy living
Strategic Ambition To ensure that pathways and models of care link into non-NHS
services that support wider detriments of health and primary
prevention, e.g. social, environmental and behavioural
interventions and services
To utilise the assets of non-NHS organisations (including the
charitable and voluntary sector by increasing collaboration
between NHS and non-NHS organisations)
3.1 What affects our health and wellbeing?
The key to preventing LTCs lies within the individual and their willingness to make lifestyle changes.
Childhood experiences, housing, education, social support, family income, employment,
communities and access to health services, all contribute to our health and well-being and are
referred to as the social determinants of health.
Page 14 of 32Figure 3: Social Determinants of Health Dahlgren G, & Whitehead, M.(1993)
Addressing these determinants is key to protecting and improving individual health and wellbeing
whilst reducing health inequalities.
3.2 The role of the CCG in preventing and managing long term conditions
The role of the CCG is to get the best possible health outcomes for our local population. This involves
understanding the needs, deciding the priorities and planning services that meet the need. In order
to do this, East and North Hertfordshire CCG buys services from organisations which provide patient
care, including NHS hospitals, mental health and community trusts, voluntary and independent
organisations. However this can lead to fragmented service provision which is good at managing
individual issues, but is less useful in preventing ill health and managing multiple conditions.
If the Health Economy is to respond to the rising demand for LTCs and co-morbidity-based care, a
shift in the way resources are deployed is required. There is an increasing need consider the whole
person with a holistic approach. Progress and change cannot be made without organisations working
together and the CCG has a role to play in bridging organisations. The COVID-19 pandemic has begun
to break some of those barriers and prompted effective integrated working and different methods of
service delivery.
Identifying wellbeing and preventing ill health should become a priority in order to prevent the
development of LTCs as well as improve patients’ quality of life and reduce disease progression. This
is also recognised in the NHS Long Term Plan.
Page 15 of 323.2.1 Obesity
“Obesity and poor diet are linked to Type 2 diabetes, high blood pressure, high cholesterol and
increased risk of respiratory, musculoskeletal and liver diseases”10
This is usually identified by measuring an individual’s Body Mass Index (BMI) (a calculation based on
a ratio) and is considered the preferred measure by the National Institute for Health and Clinical
Excellence (NICE).
Figure 4: Body Mass Index Categories (NICE)
13-18 kg/m2 19-24 kg/m2 25-29 kg/m2 30+ kg/m2
Underweight Healthy Weight Overweight Obese
**It is important to note that although the above are the widely recognised as weight measurements , this
does vary depending on ethnicity as people from a South Asian background would be regarded as a healthy
2.
weight up to 23kg/m
People who are obese are at high risk of developing long term conditions such as type 2 diabetes,
coronary heart disease as well as mental health. Although Tier 1 and 2 weight management services
are the responsibility of Public Health to commission, the CCG has a role to play through promoting
these services and supporting patients to access and engage.
3.2.2 Alcohol
Measuring the prevalence of alcohol consumption is difficult as self-reported statistics such as those
collected by the Office of National Statistics and the Health and Safety Executive tend to be dogged
by under-reporting, as well as lacking data from vulnerable populations such as the homeless.
3.2.3 Hypertension
Hypertension is a major risk factor for stroke, heart failure, chronic kidney disease, dementia and
eye damage, leading to premature morbidity and mortality.
Hypertension can be predisposed by both non-modifiable risk factors such as age, gender and
ethnicity, as well as modifiable risk factors such as physical activity, alcohol, obesity, and mental
health problems (Public Health England). Treatment and lifestyle changes can help to control high
blood pressure and therefore reduce the risk of life-threatening illness.
3.2.4 Smoking
People who smoke are at greater risk of developing a LTC or additional LTCs. The Tobacco Control
Strategic Plan for Hertfordshire (Public Health Hertfordshire) has a priority of reducing the smoking
prevalence in the general population by at least 1% per year. The CCG supports the delivery of this
ambition through the alignments of policies and strategies.
10
Long Term plan
Page 16 of 32The NHS Long Term Plan has set a goal that “by 2023/24 all people admitted to hospital who smoke
will be offered NHS-funded tobacco treatment services”11 .
It is the role of the CCG and the ICP to support Public Health in the prevention agenda through
alignment of policies and strategies.
4. IDENTIFICATION, DIAGNOSIS AND STAGING
Importance Identifying, diagnosing and staging of LTCs at the earliest opportunity
can ensure patients are placed on the appropriate care pathways to
maximise outcome opportunities
Strategic Ambition To increase the detection of LTCs in line with expected levels
based on our demographic profile
To increase the staging of disease at the point of diagnosis for
LTCs
To detect disease at an earlier stage to minimise the risk of
disease progression and improve outcomes
Diagnosing patients in a timely manner provides the opportunity to reduce the complications of
LTCs, which lead to patient morbidity and emergency admissions. Early diagnosis also provides the
patient with time to engage in educational programmes and beneficial services, to aid self-
management and enabling individuals to stay well for longer.
4.1 Identification
There are a number of established mechanisms to support the detection of patients with potential
LTCs (see 4.1.1-4.1.3). GP practices can also be supported to proactively identify this vulnerable
cohort through case finding and monitoring.
4.1.1 NHS Health Check
The NHS Health Check is a check-up for adults aged 40-74, designed to identify individuals who
might develop stroke, kidney disease, heart disease, type 2 diabetes or dementia. The health check
takes into account the individual’s lifestyle and risk profile to find ways to lower the risk of
developing one of the above conditions. Individuals over the age of 74 have a named accountable
GP, who is responsible for providing a health check on request.
4.1.2 Learning Disability Annual Health Check
People with a learning disability often have poorer physical and mental health outcomes. Any
individual aged 14 or over, and who is on their GPs Learning Disability register is entitled to an
annual health check. This ensures that individuals with a learning disability can discuss their health
and identify problems early.
11
Ibid
Page 17 of 324.1.3 Severe Mental Illness (SMI) Health Check
Individuals living with severe mental illness (schizophrenia, bipolar affective disorder, or who have
experienced an episode of non-organic psychosis), have one of the greatest health inequality gaps in
England. Often the physical health of these individuals is overlooked – the life expectancy of people
with SMI is now 15-20 years below that of the general population. More than 40% of adults with SMI
smoke, but they also have double the risk of obesity and diabetes, three times the risk of
hypertension and five times the risk of lipid imbalances, compared to those without a diagnosis of
SMI.
Individuals on the SMI register should have a physical health check at least annually. (NICE CG185,
CG178). This should align with the NHS Health Check, but should also be mindful of any additional
needs.
4.2 Understanding and Accepting Diagnosis
A diagnosis can bring with it new medications, multiple appointments and the need to make
significant lifestyle changes. All of these factors can raise questions and concerns about how an
individual’s diagnosis may affect their work, family and social life.
Education is key to empowering patients to manage their own health, but needs to be delivered to
the patient at an appropriate time. Individuals should be signposted to reliable sources of
information in their chosen format. In many cases, people close to the patient may also wish to be
involved and have questions about how best to support them.
For some individuals, a new diagnosis of a LTC can impact their mental health. Appropriate levels of
support should be accessible to all newly diagnosed patients.
4.3 Disease Staging
Disease staging is used to assess the severity of an individual’s disease. ENHCCG GP Practices
already routinely review their patient records to ensure that every patient with a diagnosis of COPD
has a GOLD (A-D) score recorded. This is the recognised risk stratification for COPD.
5. LIVING WITH A LONG TERM CONDITION – A PROACTIVE APPROACH
Importance Patients and their carers need to be empowered to take responsibility
for their own healthcare.
Strategic Ambition To increase the level of patients feeling enabled to self-manage
their LTC
To provide information and advice at the point of diagnosis to
support patients to understand their condition and what they
can do to manage their health
To provide ongoing education, advice and support, tailored to
their level of need and personal circumstances to continue
Page 18 of 32supporting patients to manage their level of engagement and
activation
To effectively use social prescribing resources to increase uptake
of new ways of managing LTCs and associated risk factors
All patients with a LTC will have a health and wellbeing reviewed
and care optimised, (including medication reviewed, goals
identified etc) and where appropriate a care plan documented
and shared with the patient and other relevant providers.
To proactively identify patients at high risk of an adverse event
(e.g. an emergency admission)
To identify and support mental health needs for people with a
long term physical health condition.
5.1 Patient Activation
“I can plan my care with people who work together to understand me and my carer(s), allow me
control and bring together services to achieve outcomes important to me”12
National Voices (2013)
Patient activation describes the knowledge, skills and confidence a person has in managing their
own healthcare. The King’s Fund states that” patients with low activation levels are more likely to
attend accident and emergency departments, to be hospitalised or to be re-admitted to hospital
after being discharged. This is likely to lead to higher health costs”13. Therefore patients with high
levels of activation are more likely to engage with their healthcare services and self-manage their
condition more effectively.
For patient’s to successful engage in their health, effective interventions need to be available that
are tailored to an individuals’ level of activation. This will provide a targeted approach most suited to
patient need with the aim of increasing their activation levels.
The Health and Social Care Act (2012) identified that care should be integrated around the needs of
the individual, and that people should be able to make decisions about their own care.
70-80% of people with a LTC can care for themselves with minimal input from health and social care
services. People with LTCs will spend only a few hours a year with a health care professional and
much of their life managing their condition independently. They will be responsible for making the
day to day decisions about their health and in order to do so, are required to become experts in their
own health and wellbeing. The health care system needs to support individuals to develop their
skills, knowledge and confidence, however, self-management is not just about enabling individuals
to self-care. Individuals should be empowered to make choices about their treatment and care
through shared decision making.
12
National Voices (2013) “A narrative for Person Centred Coordinated Care”
13
The King’s Fund (2014) “Supporting people to manage their health: an introduction to patient activation”
Page 19 of 32People are able self-manage their condition if they:
1. Can access appropriate information and advice at the right time from the right person
2. Feel confident in managing their condition
3. Are better informed about their condition(s) and how to manage it
4. Are supported to make decisions about their health care through shared decision making
5. Have a clear plan so that they (or the people around them) know what to do if their
condition worsens
6. Have access to digital technology to help track and manage their condition
7. Are treated as a whole person rather than by individual diseases
8. Can access peer support
The self-management of long term conditions can “result in a slower disease progression, fewer
planned and unscheduled acute episodes and shorter lengths of stay”14.
In order for people to be supported to self-manage their conditions they require:
1) Access to up to date and reliable information
2) Education on their specific condition and what it means for them
3) Support to increase their confidence in managing their condition
5.2 Patient Education
5.2.1 Access to Information
79.59% of people surveyed felt confident in accessing advice relating to their condition and the
majority of this (91.84%) was sourced from the internet. However the group also reported barriers in
accessing this information including;
Sparse knowledge of what is available, including local resources
Not knowing what questions to ask
Lack of face to face time with specialists particularly if you have mobility and/or transport
issues (The delivery of education will need to be considered following COVID-19)
Too much information online, which can be contradictory, overwhelming or confusing
5.2.2 Education
Education is necessary not only at the point of diagnosis, but throughout the life-time of the
individual. Education can be provided in a number of ways from webinars and online programmes to
short informative text messages and posters in health and social care settings.
There are a number of education programmes already in existence however the quality and
accessibility within each programme can vary across the different LTCs. In order to reduce this
variation, there needs to be a review of what currently does and does not exist, costs and
accessibility.
It is also important to involve those who support the patient, although this person may not
necessarily be identified as a carer.
14 rd
LTC Compendium (3 Edition)
Page 20 of 32Self-management plans are often provided to patients, but without education on what they are and
how to use them they are of little use. Plans are often paper based and with the increasing advances
in digital technology there is a need to explore additional mechanisms. COVID-19 has accelerated
the development and utilisation of digital platforms to support patient management. As part of the
review of education it is important that digital technology is considered, not only in education but
also in communication between patient and clinician.
Education on LTCs should also be adaptable to take into account lifestyle factors that can affect
individuals. It needs to be tailored to individuals to take account of specific cultural needs and/or
learning abilities. In every form of education, consideration must be given to how this is accessible to
carers and the support that can be provided to them.
5.3 Social Prescribing
Social prescribing enables healthcare professionals to refer patients to a link worker, to co-design a
non-clinical social prescription to improve their health and wellbeing. They connect people to
community groups and statutory services for practical and emotional support.
This is a crucial resource to support and extend primary care prevention and to support the
management of risk factors.
Figure 5: Social Prescribing Model
Page 21 of 325.4 Co-ordinating Care
Valuing people as active participants in the planning and management of their health leads to
improved wellbeing, satisfaction and experience of healthcare. 60% of CCG patients surveyed stated
they did not currently have a care plan, and a further 17% were unsure of their care plan status.
Developing patient-based solutions also improves patient compliance and means that management
plans are appropriate to the individual, improving the chances of patients receiving the support they
need. Care planning is recommended by NICE, and its guidance suggests that care plans should
include:
Changes in medication and other treatments
Prioritising healthcare appointments
Anticipating changes in a patient’s health and wellbeing
Assigning responsibility for care coordination and ensuring this is communicated to other
people involved in the patient’s care
Other areas the person considers important to them
Arranging a follow-up and review of decisions made
The successful management of a long-term condition requires a multidisciplinary approach, working
in conjunction with patients, carers and family. Therefore it is important to ensure care plans are in
an accessible format and (with the patient’s permission), shared with the other people involved in
their care, to ensure their agreed plans are recognised by all who support them.
5.4.1 Shared Decision Making
At the heart of personalised care is shared decision making - a process in which people are
supported by clinicians to a) understand the care, treatment and support options available and b)
make a decision about a preferred course of action, based on evidence-based, good quality
information and their personal preferences. It can create a new relationship between individuals and
professionals based on partnership and reduce unwarranted clinical variation.
A good shared decision making process will mean that:
• people are aware that care, treatment and support options are available, that a decision is
to be made and that the decision is informed by knowledge of the pros and cons of each
option and ‘what matters to me’
· clinicians are trained in shared decision making skills, including risk communication and
appropriate decision support for people at all levels of health literacy and for those groups
who experience inequalities or exclusion
• well-designed, evidence-based decision support tools are available and accessible
• shared decision making is built into relevant decision points in all pathways
5.4.2 Annual Review
It is important to ensure that individuals are followed up on an annual basis to ensure their condition
has not deteriorated, their medications are still appropriate and to perform necessary monitoring
(e.g. blood tests). It is also an opportunity for patients to discuss any aspect of their condition that
may be causing them concern. Annual reviews are not necessarily carried out by the patients’ GP; it
may be that if an individual has a complex long-term condition that this is best done by their hospital
Page 22 of 32specialist. However, the patient should be clear what an annual review looks like for them and who
will undertake it.
Due to COVID-19 there is a backlog of patients that have not had their annual review or not had all
elements completed due to it being a non-face-to-face consultation. The system will need to be
supported in developing a recovery plan to manage this backlog.
When surveyed, 62% of CCG respondents with long term conditions advised that they had not had a
review of their condition within the last 12 months.
5.5 Medicine Optimisation
Medication is the most common form of healthcare intervention. The majority of patients diagnosed
with a LTC will be reliant on long term medicine use. Medicine optimisation is therefore crucial in
ensuring medicines are both clinically and cost effective; this will support an improvement in health
outcomes, reducing medication waste and improving medicine safety.
Figure 6: Medicines Optimisation (NHS England)
The CCG’s patient survey found that 53% of people surveyed took more than 5 tablets/medicines on
a daily basis, and 60% would like this to be reduced if possible. The vast majority (91%) of all survey
participants understood the reasons behind the prescription of these medications, yet only 68%
indicated that they were fully informed of any changes to their medication and the rationale for
doing so.
The focus for effective medication optimisation in patients with LTCs should include;
Page 23 of 32 Structured medication reviews: Ensuring there are structured, holistic and personal reviews
of a patient’s medicine regime
Medicine optimisation: Supporting patients to get the best from their medicines
Reducing unnecessary polypharmacy: Reducing the number of unnecessary and/or
ineffective medication prescribed to patients
Patient education: Increasing patient knowledge of their medication including purpose,
interactions with other drugs and side effects
Workforce: Developing the emerging pharmacy workforce in primary care and supporting
the integration of community pharmacy services to support better outcomes in LTCs
5.6 Mental Health
It is estimated that 30% of all people with a LTC have a co-morbid mental health problem15. These
can lead to significantly poorer health outcomes and reduced quality of life.
There is particularly strong evidence for a close association between cardiovascular diseases,
diabetes and chronic obstructive pulmonary disease (COPD), and conditions such as depression and
anxiety.
In order for people to be able to manage their long term condition their emotional and psychological
needs must also be met. This should be integrated with their physical health care services where
possible however it is recognised that some patients may require specialist mental health services.
6. MANAGING MULTIMORBIDITIES
Importance A patient with multi-morbidities requires a more enhanced care than an
individual with one LTC. A co-ordinated and MDT focused approach to
the management of multi-morbidities, alongside patient activation and
engagement will better support patients.
Strategic Ambition To commission an integrated and specialist led MDT approach to
the management of multimorbidities
To increase the staging of disease during disease reviews
To commission services that provide a stratified approach to
patient management
To proactively identify and manage patient risk factors
To support improved information sharing across organisational
and care systems
6.1. What are multi-morbidities?
As people live longer there is an increased possibility that they will develop multi morbidities
(additional diseases/conditions) or complications relating to their long term condition.
“People with multiple conditions have poorer health outcomes, poorer experiences of care and are
more likely to report care coordination problems”.16
15
Cimpean D, Drake RE (2011) “Treating co-morbid medical conditions and anxiety/depression”
Page 24 of 32Sometimes having a particular long term condition will increase the likelihood of developing a
second. However, it is possible to have two or more conditions that develop independently from
each other. The exacerbation of one condition can impact on another.
One in two people with a multi-morbidity report a lack of information about conditions or
treatments, poor communication between healthcare professionals, and waiting times to see a
specialist.17
Continuity of relationships is more difficult to enable when care and responsibility is shared across
multiple settings. This poses a particular challenge in primary care, where continuity of care –
triggered in part by the large numbers of consultations required for people with multimorbidity –
can be difficult.18
6.2 Preventing multi-morbidities
Long term conditions are more prevalent with increasing age, and with this comes the increasing
likelihood of an individual having more than one long-term condition. Multi-morbidity is also more
common among deprived populations, especially where one of the diagnoses is a mental health
problem.
By addressing the known risk factors for long-term conditions discussed in chapter 3; the likelihood
of them developing a subsequent condition will be reduced. However it needs to be recognised that
whilst these risk factors are modifiable, they do not occur in isolation and must be viewed holistically
with the patient to ensure appropriate and achievable targets are set.
In addition for those with long term conditions that specifically increase the risk of another
developing it is vital that patients receive education and self-management strategies to reduce their
chance of decompensation or exacerbation.
6.3 Supporting people with multi-morbidities
Living with and successfully managing a long term condition can require support from many facets of
the health and social care system. The complexity of this can increase dramatically for patients who
are diagnosed with more than one long term condition. Increasing numbers of medications,
alongside multiple appointments can cause patients frustration and anxiety about the best way to
manage their health.
For this group of patients it is especially important that their health and the management of their
long term conditions are viewed holistically; with the understanding of how one condition or
treatment may impact another aspect of their health or lived experience, and how this is most
appropriately managed.
16
https://richmondgroupofcharities.org.uk/taskforce-multiple-conditions
17
Adeniji C et al. (2015). What are the core predictors of ‘hassles’ among patients with multimorbidity in
primary care? A cross sectional study. BMC Health Serv Res 15: 255.
18
Salisbury C et al. (2011). Epidemiology and impact of multimorbidity in primary care: a retrospective cohort study. Br J
Gen Pract 61(582): e12–e21.
Page 25 of 32By empowering individuals to take part in ongoing discussions about their care and planning for the
future; the concerns about managing several conditions, multiple medications and different teams
of health professionals can begin to be ameliorated.
Many individuals with multi-morbidities are looked after by several teams of health professionals,
social care and other independent or voluntary organisations. As commissioners, it is vital to
understand the role that all of these organisations play in supporting an individual with multi-
morbidities. It is key that all relevant organisations are consulted with and their opinions and skills
are taken into account. Specialist services should focus on highest risk patients and on intervening at
the most appropriate rime rather than routine management.
6.4 Workforce
It is essential that NHS staff, and wider system colleagues, get the support they need to do their jobs
effectively. The interim NHS People Plan sets out a number of ambitions that are relevant to this
strategy including;
Making sure that people have the right skills to help care for patients
Empowering the workforce to use new technology
Utilising alternative workforce models to strengthen the robustness of the service and
promote a MDT approach to patient care
7. PALLIATIVE AND END OF LIFE CARE
Importance Palliative care provides important pain and symptom management and
a higher quality of life for patients until their death.
Strategic Ambition To systematically identify patients with a LTC who are in the last
year of life
To ensure that patients in the last year of life have an advanced
care plan, including escalation plan, anticipatory medications
and a discussion around DNACPR
To focus on the needs of the patient to understand what is
important to them and ensure patients are plugged into the
appropriate services
To ensure that patients at the end of life stage of their LTC
receive appropriate care and are supported to remain in their
preferred place of residence
Palliative care aims to improve the quality of life for people with life-limiting illnesses, by controlling
symptoms. It also helps patients and families deal with emotional, spiritual or practical issues arising
from the illness and is not reserved for patients at the end of their life.
People suffering from any incurable progressive illness may require palliative care - for example,
those with heart failure, advanced respiratory disease, dementia, and the end stages of progressive
neurological diseases or cancer.
Despite this, the majority of palliative care inpatients (88% of palliative care inpatients and around
75% of new referrals to hospital support and outpatient services in the UK (excluding Scotland)) are
Page 26 of 32for people with cancer19. This suggests people with non-cancer conditions may face barriers to
accessing palliative care.
Regardless of the disease, more than 50% of people in need of palliative or end of life care will
experience pain, breathlessness and fatigue20. The palliative and end of life service in East and North
Hertfordshire can support people to manage these three symptoms and so more should be done to
ensure these people are accessing the services. They can also provide education in self-management
of symptoms.
Locally there has been a lot of work undertaken to improve the links between palliative and end of
life care providers and LTCs. The focus has particularly been in regards to dementia, respiratory
diseases and heart failure. As a result, there has been a significant shift in the proportion of non-
cancer patients accessing hospice care.
8. CONCLUSION
ENHCCG recognises the importance of effective identification and management of LTCs. COVID-19
has created a greater challenge in this regard but also has prompted new ways of working which can
be adapted and adopted for the benefit of the healthcare system and its patients.
Successful transformation of LTC services will require a multi-stakeholder approach from across the
system and its wider partners. Primary care prevention is crucial in supporting the wellbeing of
patients. Improved detection and diagnosis will enable patients to be placed on the most
appropriate care pathway at the earliest opportunity. Better coding and increased staging of disease
at the point of diagnosis will support the CCG to apply a Population Health Management approach to
commissioning of stratified services, that will support patients from diagnosis through to disease
management, including proactive crisis response, to palliative and end of life care.
Ambitions within this strategy have been set to meet this challenge. The delivery of the
implementation plan (see Appendix One) will require collaboration with all organisations that
provide care and support for patients with a LTC and their carers.
The desired outcome is to ensure East and North Hertfordshire has a sustained, integrated and
holistic healthcare system for patients with a LTC.
19
National Survey of Patient Activity Data for Specialist Palliative Care Services
20
Dixon et al, Equity in the provision of palliative care in the UK: review of evidence (2015)
Page 27 of 32APPENDIX ONE: IMPLEMENTATION PLAN
Ambitions Year 1 Year 2 Year 3
Prevention
To ensure models of care To map the service provision of Care To update ENH pathways (and To ensure an online resource is
support the wider Navigators and/or Social Prescribers clinical systems where appropriate) available for patients to self-refer to
determinants of health and across ENH to reflect the prevention service prevention programmes
primary prevention offer (including how patients access
To utilise the assets of non- social prescribers and care
NHS organisations navigators)
To map the prevention services To signpost to Public Health
available initiatives such as befriending,
volunteering and social support
groups and non-NHS organisations
To ensure patients with LTC To ensure patients with LTC To ensure patients with LTC (Stroke,
(Diabetes, CVD, Respiratory and (Neurology, CKD and opportunistic) TIA, Atrial Fibrillation and
opportunistic) have their risk factors have their risk factors recorded opportunistic) have their risk factors
recorded (height, weight, BMI, (height, weight, BMI, alcohol use, recorded (height, weight, BMI,
alcohol use, and smoking status) and smoking status) alcohol use and smoking status)
To improve communication that
reflect the needs of vulnerable
isolated groups, those with low
literacy or learning difficulties, and
people who do not use digital or
social media
To populate a Population Health To populate a Population Health To populate a Population Health
Management Pyramid for COPD, Management Pyramid for Asthma, Management Pyramid for other LTCs
Page 28 of 32Heart Failure and Diabetes Atrial Fibrillation, Stroke and (to be determined)
Parkinson’s Disease
Identification
To increase the detection of To support Public Health to increase
LTCs the number of eligible patients
To detect disease at an undertaking a NHS Health Check
earlier stage To support Public Health to increase
To increase the staging of the number of eligible patients
disease at the point of undertaking a SMI/Learning
diagnosis for LTCs Disability Health Check
To support case finding in primary To support case finding in primary To support acute discharge reviews
care for patients with suspected care for patients with suspected LTCs where the patient’s diagnosis is
COPD and/or breathlessness (to be determined) unknown in primary care
To ensure all patients diagnosed To ensure all patients diagnosed
with COPD have an appropriate with Heart Failure and Chronic
GOLD status coded Kidney Disease have the appropriate
disease staging coded
To work collaboratively with PCWEN
to undertake a gap analysis of
workforce training needs to support
earlier and appropriate diagnosis
To improve the access to diagnostics
for those most likely to have
undetected disease (i.e. Spirometry
– COPD)
To populate a Population Health To populate a Population Health To populate a Population Health
Management Pyramid for COPD, Management Pyramid for Asthma, Management Pyramid for other LTCs
Page 29 of 32Heart Failure and Diabetes Atrial Fibrillation, Stroke and (to be determined)
Parkinson’s Disease
Management
To provide information and To map the information available to To develop required information for To develop required information for
advice at the point of patients (and staff) at the point of patients (and staff) at the point of patients (and staff) at the point of
diagnosis diagnosis diagnosis diagnosis
To provide ongoing To map the education available To develop required education for To develop required education for
education, advice and throughout disease progression, specific LTCs (to be determined) specific LTCs (to be determined)
support including methods of delivery
All patients with a LTC will To research digital platforms for the To develop a structured self- To develop a structured self-
have a health and wellbeing delivery of education, management programme for management programme for
reviewed and care communication and remote patients with low levels of activation patients with moderate levels of
optimised monitoring activation
To proactively identify To link LTC education programmes
patients at high risk of an with national communication events
adverse event (e.g. an and local initiatives
emergency admission) To increase the number of annual To increase the number of annual To increase the number of annual
To increase the level of reviews for COPD, Heart Failure and reviews for Asthma, Atrial reviews for LTCs (to be determined);
patients feeling enabled to Diabetes; ensuring disease staging is Fibrillation, Stroke and Parkinson’s ensuring disease staging is reviewed
self-manage their LTC reviewed and updated, medication Disease; ensuring disease staging is and updated, medication optimised
To identify and support optimised and care plan in place reviewed and updated, medication and care plan in place
mental health needs for optimised and care plan in place
people with a long term To integrate mental health services To integrate mental health services To integrate mental health services
physical health condition with Respiratory, Heart Failure and with CVD, Stroke and Neurology with other LTCs (to be determined)
Diabetes
To identify a targeted cohort of To identify a targeted cohort of
patients at risk of adverse events (to patients at risk of adverse events (to
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