http://committee.nottinghamcity.gov.uk/ieListDocuments.aspx?CId=185&MId=5714&Ver=4
Meeting Wednesday, 28 September 2016
http://committee.nottinghamcity.gov.uk/documents/g5714/Public reports pack 28th-Sep-2016 14.00 Health and Wellbeing Board.pdf?T=10
NOTTINGHAM CITY COUNCIL
HEALTH AND WELLBEING BOARD
Date: Wednesday, 28 September 2016
Public Document Pack
Among the various documents circulated within this
28 September 2016 pack was a consultation document for books on prescription:
(starts on Page 137 of the Nottingham City Council pack, but is also available as a standalone document here:
http://www.bsrm.org.uk/downloads/rwbopforltcconsultationpaperaug16.pdf )
Note: Active links are provided for all the referenced documents but please refer to the PDF for the links.
I have highlighted in red some of the CFS, ME related text.
Reading Well Books on Prescription for long-term conditions: consultation paper August 2016
1. Introduction
As part of its successful Reading Well Books on Prescription (RWBOP) programme, The Reading Agency and the Society of Chief Librarians are planning to develop a new scheme for public libraries focusing on the needs of people with long-term conditions (LTCs). This work will be developed and delivered with relevant health agencies and organisations. It supports the Society of Chief Librarians’ Public Library Health Offer, a national strategy that articulates the role that libraries can play in promoting the health and wellbeing of local communities.
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1 Reading Well Books on Prescription Evaluation Report - BOP consulting (2015)
3. Classification of long-term conditions
Physical illnesses such as asthma or diabetes, which following diagnosis usually continue to present throughout a person’s lifetime, were once referred to as chronic physical diseases or illnesses. Unlike acute physical health problems for which successful medical treatment can often provide a cure and lead to full patient recovery, LTCs are best characterised as those for which a cure leading to full recovery does not exist and medical treatment comprises the management of symptoms for the remainder of the person’s life. As such, LTCs have a lasting and persistent impact on people’s functioning that may affect quality of life, as well as placing great demands on health services through GP consultations, out-patient clinics, hospital admissions and the costs of prescribed medications and interventions.
3.1 Long-term conditions
Although LTCs are wide-ranging, from idiopathic neurological diseases such as multiple sclerosis or Parkinson’s through to cancer, cardiovascular disease and renal failure, and have their own individual pathologies and treatments, they also share common aspects of treatment and management that has led to them being frequently referred to in the last couple of decades as ‘long-term conditions’ by health professionals. Moreover, these illnesses are becoming more prevalent due to the combined effects of an ageing population and the impact of lifestyles and behaviours (for example diet and obesity, smoking, alcohol abuse) on their occurrence. Encouragingly, however, the increase in prevalence of LTCs is also partly due to people with many more conditions that once resulted in considerably reduced life expectancy now living much longer and fuller lives as a result of advances in medical science.
Although health care organisations have devised a variety of definitions for LTCs, they have extensive overlap:
- The Department of Health: ‘A long term condition is a condition that cannot, at present, be cured but is controlled by medication and/or other treatment/therapies.’2
- NICE Guidelines (NG22): ‘One that generally lasts a year or longer and impacts on a person’s life… may also be known as a chronic condition.’3
- The King’s Fund: ‘Long-term conditions or chronic diseases are conditions for which there is currently no cure, and which are managed with drugs and other treatment.’4
- The Royal College of GPs (RCGP): ‘A long term condition is any medical condition that cannot currently be cured but can be managed with the use of medication and/or other therapies. This is in contrast to acute conditions which typically have a finite duration such as a respiratory infection, an inguinal hernia or a mild episode of depression.’5
2 Long Term Conditions Compendium of Information: Third Edition - Department of Health (2012)
3 Older people with social care needs and multiple long-term conditions [NG22] - NICE (2015)
4 Long Term Conditions & Multi-morbidity - The King's Fund
5 Written Evidence Long Term Conditions - Royal College of GPs (2012)
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However, the RCGP then goes on to say that the best way to gauge whether a patient has a LTC is on an individual basis with discussion between a patient and their health practitioner. As we will review within Section 4, contemporary approaches to the management of LTCs stress the need to treat the whole patient rather than just the disease, to emphasise the importance of proactive ‘living well and wellbeing’ approaches, as well as medical interventions that can include a consideration of patient goals and the need to individually plan care taking into account multiple co-morbidities and the impact of these conditions on social care needs and support.
Health conditions that are often identified as coming under the LTCs banner include, but are not restricted to: asthma, cancer, cardiovascular disease, chronic fatigue syndrome, chronic kidney disease, chronic obstructive pulmonary disease, chronic pain, diabetes, irritable bowel syndrome, multiple sclerosis, obesity/weight loss intervention, osteoarthritis, rheumatoid arthritis, Parkinson’s disease, stroke. This is the list used in NHS Scotland’s Matrix Guide6 to delivering psychological therapies for LTCs.
Long-term mental health problems, especially depression but also schizophrenia and bipolar disorder, together with some dementias, are also regarded as LTCs. The RWBOP list for LTCs will not deal specifically with serious mental illnesses such as recurrent depression, psychoses and dementia since some of these conditions have already been referred to within the adult mental health and dementia lists. However, when depression or anxiety are associated with a LTC, their management will be considered. Other persistent conditions such as HIV and AIDS and sickle cell disease are also sometimes included. Indeed, the term LTCs is designed to be inclusive and not strictly defined by a rigid diagnostic scheme.
3.2 Long-term conditions and mental health
LTCs have also been of interest to mental health practitioners since, unsurprisingly, rates of common mental health conditions such as anxiety and depression are frequently elevated within these patient groups.7 The emphasis on more holistic treatment of the individual has meant that it has become more common to offer both physical and psychological treatments to people with LTCs. The overlap between the conditions is illustrated strikingly in Figure 1 below, taken from a King’s Fund report. Providing effective treatment for co-morbid conditions such as depression often results in improved quality of life and more effective physical management of the condition, leading to savings in health care provision. In 2011 the Department of Health’s Improving Access to Psychological Therapies (IAPT) programme undertook to establish a series of pathfinder projects to examine the viability of extending IAPT services to encompass LTCs. This was an extension of the most prevalent collaborative care model, as reflected in the recently published NICE guidance on depression and LTCs,8 of building partnerships between specialist mental health services and primary care in tackling LTCs.
6 Matrix Guide to delivery psychological therapies for LTCs - NHS Scotland
7 Long-term conditions positive practice guide - IAPT (2008), Long-term conditions and mental health: the cost of co-morbidities - The King's Fund (2012), Emotional and psychological wellbeing for patients with long-term conditions - NHS confederation (2012)
8 Depression in adults with a chronic physical health problem: recognition and management [CG91] – NICE (2009)
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Fig 1 The overlap between long-term conditions and mental health problems
[Ed: Omitted graphic from these extracts]
3.3 Medically unexplained symptoms or functional symptoms
The distinction, however, between physical and mental health conditions is not straightforward. There are many conditions which impact on patients’ lives, through either loss of function or debilitating pain, for which clinical and diagnostic assessments provide no identifiable physical diagnosis or pathology. These conditions are often referred to as ‘medically unexplained symptoms’ (MUS) but previously have been described as ‘functional or psychosomatic complaints’. It should be noted that this diagnostic term relies not on the positive identification of a disease by the presentation of specific symptoms but the absence of pathology. These terms are often disliked by patients since they imply that their physical symptoms and suffering are ‘all in the mind’ and hence not amenable to medical treatment. The term is also unpopular with many health professionals since it encourages false dualistic thinking that illnesses are either physically or psychologically caused.9 Indeed, Roth and Pilling10 when scoping competences for the IAPT workforce in delivering psychological interventions for people with LTCs and MUS, suggested using the more comprehensive and descriptive term of ‘persistent physical health conditions’ when referring to both LTCs and MUS.
Conditions frequently identified as MUS include fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. A recent good practice guide published by IAPT11 lists in addition to these three common conditions: temporomandibular joint dysfunction, atypical facial pain, non-cardiac chest pain, hyperventilation, chronic cough, loin pain haematuria syndrome, functional weakness/movement disorders, dissociative (non-epileptic) attacks and chronic pelvic pain/dysmenorrhea.
Furthermore, in as many as 30% of patients referred for diagnostic tests for common complaints such as chest or back pain, no physical pathology or medical diagnosis will be revealed, suggesting that these complaints might be functionally associated with anxiety or depression. It is argued that MUS cost the NHS significant resources in terms of repeated and unrevealing outpatient appointments and diagnostic testing.
9 The cognitive behavioural model of medically unexplained symptoms: A theoretical and empirical review - Deary, Chalder & Sharpe (2007)
10 Psychological Interventions with People and Persistent Physical Health Problems - Kings College London (2011)
11 Medically unexplained symptoms good practice guide - IAPT (2015)
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Recently it has been suggested that services might consider identifying MUS or offering these patients the opportunity for psychological interventions in order to reduce the financial impact of MUS on acute hospital services.
3.4 Summary
Persistent physical health conditions have major impacts on individuals and their families/carers, together with growing demands on both health and social care. Rather than dealing with each chronic physical condition separately, health professionals have striven to adopt a common approach to assessing and managing people with these physical illnesses. As we will see in the next sections, this has emphasised personalised care, which is proactive and planned to encompass all LTCs, and integrates both physical and psychological needs, together with health and social care provision. It is also argued that people with MUS where clinical assessments have failed to identify an underlying pathology or physical diagnosis would also benefit from systems of care developed for people with LTCs, together with interventions targeting positive adaptation and living well, and wellbeing.
Consultation question 2
a. ‘Long-term condition’ is an inclusive term and many conditions can be defined as such. However, we need to produce a booklist of approx. 25–35 titles for this scheme and so will not be able to provide targeted books for all long-term conditions. Taking into account prevalence, need and relevance of book-based information provided by RWBOP please select the 10 LTCs that you believe the RWBOP LTC scheme should target from the list below:
Angina
Arthritis – includes osteoarthritis and rheumatoid arthritis
Asthma
Cancer
Cardiovascular disease (CVD) – includes coronary heart disease, stroke, peripheral arterial disease and aortic disease
Chronic fatigue syndrome (CFS), or ME
Chronic kidney disease (CKD)
Chronic obstructive pulmonary disease (COPD) – includes chronic bronchitis, emphysema, chronic obstructive airways disease
Chronic pain
Chronic skin conditions – includes eczema and psoriasis
Diabetes
Endometriosis
Epilepsy
Fibromyalgia
High blood pressure, or hypertension
HIV and AIDS
Inflammatory bowel disease (IBD) – includes Crohn’s Disease and Ulcerative Colitis
Irritable bowel syndrome (IBS)
Motor Neuron Disease (MND)
Multiple sclerosis (MS)
Parkinson’s Disease
Sickle cell disease
b. Please indicate any additional LTCs not identified above that you think should be prioritised by the list and tell us why.
c. Is there any terminology relating to long-term conditions that you would advise we avoid using?
Please submit your response at the following link:
www.surveymonkey.co.uk/r/consultationLTC
4. Policy framework
Delivering health services for people with chronic disease or LTCs has been a major focus for policy makers, health professionals and charities for the last two decades. A summary of international approaches and a strategic framework identifying key policy issues surrounding long-term care was published in 2003 by the World Health Organisation.12 It was becoming clear that the demands on health service provision arising from a growing and ageing population requiring medical and social care for a variety of different LTCs was a major challenge for health care planners and policy makers, not to mention health economists and politicians.
Below we summarise our understanding of the scale of the challenge in meeting the needs of people with LTCs and the associated costs of providing services and impact on health care in general. We also review the most recent UK developments in policy within this area originating from governments, professional bodies, and patient groups and charities. Based on this evidence we argue the case that the current policy framework supports the development by The Reading Agency and Society of Chief Librarians of a Books on Prescription scheme for people with LTCs and their relatives/carers.
4.1 The extent of the problem: statistics and costs
Statistical and economic profiles
Numerous reports detail the prevalence of common LTCs, the changing demographic profile, the impact on the uptake of GP and hospital outpatient and inpatient services, and the overall economic burden of providing care and meeting the needs of these patients. For example, the Department of Health’s own LTC Compendium of Information13 lists the following statistics:
- Fifteen million people in England have one or more LTCs, and the number of people with multiple conditions (multi-morbidity) is rising
- Around 70% of the total healthcare spend in England is attributed to caring for people with long-term conditions.
- People with long-term conditions account for 50% of all GP appointments.
The majority of people aged over 65 have two or more LTCs; the majority of over 75s have three or more; and, overall, the number of people with multiple conditions is rising.
12 International policy issues in long-term conditions - World Health Organisation (2003)
13 Long Term Conditions Compendium of Information: Third Edition - Department of Health (2012)
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A more recent set of revised statistics produced by NHS England reports the following:14
About 26 million people in England have at least one LTC.
About 10 million people have two or more LTCs, 1 million with frailty, 0.5 million at end of life.
There’s a three-fold increase in cost of health care for those with frailty.
Some people living in deprived areas will have health problems 10–15 years earlier than people in affluent areas.
15% of young adults aged 11–15 have a LTC.
Only 59% of people living with LTCs are in work, compared with 72% of the general population.
LTCs account for:
50% of all GP appointments
64% of all hospital outpatients appointments
70% of all hospital bed days
70% of health and care spend
33% of GP appointments for patients with multiple LTCs
50% of emergency bed days for over 75s
25% of bed days occupied by someone dying
64% of people living with LTCs at present say they feel supported, so there is room for improvement.
People living with LTCs are being supported to develop their own care plans. However, at present, only 3.2% have written their own plan.
On average people living with LTCs spend just four hours a year with a health professional and 8,756 hours self-managing.
80% of carers report that caring for someone living with a LTC has had a negative impact on their health. In addition, £1 billion in carer’s allowance is unclaimed each year.
Multi-morbidity and mental health problems
A major contributor to the costs of LTCs care is the frequent co-morbidity with mental health problems, particularly depression. A recent King’s Fund report15 indicates that people with a LTC are two to three times more likely to also experience depression. Similarly, around 30% of people with a LTC will experience some form of mental health problem. Furthermore, having depression alongside a LTC can exacerbate the physical condition(s) and raises health care costs by 45% for each person affected. Furthermore, experiencing depression alongside at least one LTC significantly worsens quality of life compared to the experience of the LTC alone16 with the impact of depression becoming greater the more LTCs the patient experiences.
14 Long-term conditions metrics infographic - NHS England (2016)
15 Long-term conditions and the cost of co-morbidity - The Kings Fund (2012)
16 Depression, chronic diseases, and decrements in health: results from the World Health Surveys - Moussavi et al (2007)
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Similar conclusions were reached by the British Heart Foundation in their publication Twice as likely: Putting long term conditions and depression on the agenda.17 Indeed, the NHS Confederation also published a report reviewing the impact of LTCs on people’s mental health and wellbeing and recommending how services should respond to this challenge.18
Impact on unemployment, benefits and work
An important area that has received considerable attention is the impact of LTCs on work and employment. A recent report by the Work Foundation has calculated the impact of LTCs on working lives. People with LTCs frequently struggle to maintain employment due to significant disabilities. This impacts on business and employers in terms of skill shortages and unemployment, sickness absence and presentism. They illustrate the scale of the problem by presenting relevant statistics for six common LTCs:19
The average age of retirement for someone with multiple sclerosis is 42 years old
Over 45% of people with asthma report going to work when ill, increasing the risk of prolonged sickness and affecting their ability to perform effectively
Just 8% of people with schizophrenia are in employment, despite evidence that up to 70% of people with severe mental illness express a desire to work
People with heart failure lose an average of 17.2 days of work per year because of absenteeism caused by their condition
Over 52% of people with diabetic macular oedema are of working age
A 10% reduction in sickness absence for people with psoriasis would provide a £50 million boost to the UK
Public Health England and NHS Employers have both published advice to employers about positive approaches to supporting people with LTCs within employment.
Impact of long-term conditions and services on people’s lives
Finally, a recent report published by the Richmond Group of Charities documents the impact of LTCs on people’s lives, together with the quality of services provided to people with LTCs. Some relevant findings are summarised below:20
44% of adult inpatients say they are not sufficiently informed about clinical decisions.
Only 40% of people could understand the stroke information packs given to them.
Only 1.6% of people with diabetes attended structured courses in education that met NICE standards.
More than two thirds of people with neurological conditions report not having been offered a care plan.
We should also stress the burden of care and associated costs of employment and benefit support for the families and carers of people with LTCs. For example, in a recent survey circulated by Carers UK the costs of
17 Twice as likely: putting long-term conditions and depression on the agenda - The British Heart Foundation (2012)
18 Investing in emotional and psychological wellbeing for patients with long-term conditions - NHS confederation (2012)
19 The impact of long-term conditions on the economy - The Work Foundation, The University of Lancaster (2016)
20 Vital Signs report - The Richmond Group of Charities (2015)
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informal caring are estimated as being equivalent to the NHS budget.21 Previous reports by Carers UK have also emphasised the increase in stress, depression and social isolation felt by carers of people with LTCs. Indeed, a recent King’s Fund report on integration between physical and mental health care emphasises the importance of providing support to carers of people with LTCs.22
Consultation question 3
Are there important socio-economic impacts relating to long-term conditions that we have missed?
Please submit your response at the following link:
www.surveymonkey.co.uk/r/consultationLTC
4.2 Policy development: reviews and guidance
It is clear that LTCs have had a major impact on the delivery of health care and the costs of NHS provision. It is not surprising, therefore, that LTCs have been the subject of numerous policy reviews and reports coming from both health professionals and the Government. Moreover, in recent years it has been acknowledged that patients with LTCs need to be consulted more extensively and encouraged to actively engage in their treatment. This has come from patients themselves and also the various charities and voluntary organisations representing them.
We will not attempt an exhaustive review of policy development in the last decade or so, but instead will attempt to identify the key issues that have emerged. There are several key reports that mark significant milestones in the development of health care provision for LTCs. Perhaps the publication of the first National Service Framework (NSF) for Long-term Conditions in 2005 is a convenient starting point, which illustrates some of the key policy areas and their development in the coming years. The NSF specifically targeted people with long-term neurological conditions such as multiple sclerosis, Parkinson’s disease, and cerebral palsy in adults. Nevertheless, a key purpose was to describe how health and social services should provide an integrated service to support and rehabilitate people with neurological conditions and other LTCs. It listed a number of quality requirements including:23
A person-centred service
Early recognition, prompt diagnosis and treatment
Emergency and acute management
Early and specialist rehabilitation
Community and vocational services
Providing practical support including equipment and accommodation
Personal care and support
Palliative care
Supporting families and carers
21 State of Caring 2016 - Carers UK (2016)
22 Bringing together physical and mental health: a new frontier for integrated care - The Kings Fund (2016)
23 National Service Framework for Long Term Conditions - Department of Health (2005)
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Many of the principles identified above have become incorporated into service planning for a whole range of LTCs. Perhaps the most important is the recognition of personalised care and the importance of treating the person/patient and not the condition.24 Other important principles have included encouraging self-management, and the development of the expert patients programme and patient held records. These innovations have arisen particularly for people with diabetes where the focus has been to encourage patients to be actively involved in managing their own condition. Asthma is another area where there has been a focus on self-management and patient recorded outcomes.
These approaches very much rely on the provision of accessible and high quality information.25 Indeed, there have been several recent initiatives to provide greater access to learning about self-care for both patients and professionals through e-learning resources. For many conditions, there has been a shift towards pro-active and innovative programmes aimed at facilitating positive adaptation to living with a LTC, as well as general improvements in healthy lifestyles and wellbeing. Good examples being for people with cardiovascular disease, arthritis, Parkinson’s disease, some types of cancer and HIV. For people with more disabling conditions, or older people with LTCs who may also have mobility or social care needs, the focus has been on integrated care planning involving health and social services assessments, co-ordinated written care plans and individualised budgets and payments.26 More recently, the focus has been on multi-morbidities which are usually the norm within older populations.27
Many of the above initiatives have been combined in a single initiative promoted by the King’s Fund and NHS England, termed the House of Care.28 The ‘House’ is a metaphor, whereby the central aspect of delivering care for LTCs is personalised care planning. However, for this to be effective, patients have to be informed and motivated, and staff committed to partnership working. The foundations for this are responsive commissioning, whereas the entire process requires oversight and appropriate organisational processes.
24 Improving the wellbeing of people with LTCs - Department of Health (2010), Improving health and wellbeing of people with long term conditions in Scotland - NHS Scotland (2009), Our vision for the future: action on long-term conditions - Coalition of collaborative care (2011)
25 Our health, our care, our say: A new direction for community services - Department of Health (2006), Patients in control: why people with long-term conditions must be empowered - Institute for Public Policy Research (2014)
26 Multimorbidity: clinical assessment and guidelines - NICE (2016), Improving the lives of people with long term conditions - Royal College of GPs (2012), Executive summary: Personalised care and support planning handbook The journey to person-centred care - NHS England (2016)
27 Older people with social care needs and multiple long-term conditions [NG22] - NICE (2015)
28 Delivering person centred care in long term conditions - BMJ Eaton Simon, Roberts Sue, Turner Bridget (2015)
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The recent emphasis on treating mental health conditions alongside LTCs29 is also consistent with the RWBOP approach and would allow for titles relating to the mental health implications of living with a LTC to be featured on the list, as well as signposting to the existing adult common mental health conditions and dementia lists. The common mental health conditions booklist was shaped by the views of IAPT therapists (both low and high intensity psychological therapists) and we would envisage that this would also be appropriate for a LTCs list.
29 Long-term conditions positive practice guide - IAPT (2008), MUS positive practice guide - IAPT (2014), Long-term conditions and mental health: the cost of co-morbidities - The Kings Fund (2012), Investing in emotional and psychological wellbeing for patients with long-term conditions - NHS confederation (2016), Investing in emotional and psychological wellbeing for patients with long-term conditions - NHS confederation (2016), Bringing together report - The Kings Fund (2016).
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5. Clinical guidelines, quality standards and the evidence base
5.1 Overview
A major effort was made when establishing the English RWBOP for common mental health conditions scheme to ensure that it was informed by the relevant NICE guidance surrounding particular conditions. There was also a strong focus on corroborating research evidence supporting the use of particular books or manuals. A summary of the evidence base is provided on The Reading Agency website.30 Where there was evidence of ineffective or potentially harmful self-help interventions, these conditions (for example, post-traumatic stress disorder) were not included on the book list.
With the original RWBOP list for common mental health conditions the strategy for gathering evidence to support particular self-help books for conditions where they might be beneficial relied heavily on recommendations about the use of guided CBT self-help books or self-help groups contained within the relevant NICE clinical guidelines. Given that the majority of books offering CBT self-help were for identified conditions where NICE guidance was available, this ensured that an identifiable and transparent evidence base was deployed. Additional guidance was provided by an expert panel of relevant health professionals.
Some books on the list referred to problems where no specific NICE guidance was available (these included anger, relationship problems, self-esteem, sleep, stress and worry). It was, however, acknowledged that there was a need for quality endorsed guidance relating to these everyday problems associated with psychological distress. The books selected were endorsed by professionals and had been subject to evaluation research and scientific scrutiny.
When attempting a similar exercise in scoping the evidence for the RWBOP dementia list, we became aware that the evidence base for individual self-help books was less developed. We therefore adopted a more general approach that critically examined the role of books and psycho-educational materials in enhancing care standards as identified by NICE and key charities in promoting the quality of dementia services. Rather than just focusing on self-help strategies to ameliorate symptoms, titles from the dementia list were about providing information for people worried about symptoms at the time of diagnosis, about how to ‘live well with dementia,’ and providing support for relatives and carers. Several biographical and
30 Evidence base for Reading Well Books on Prescription - The Reading Agency website
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fictional accounts of dementia were also recommended by both individuals and charities as being extremely useful in helping people to understand the experience and inner worlds of people with dementia. For the young people’s list, we adopted aspects of both approaches identified above. We were also strongly guided by the views of young people themselves since for this particular project we adopted a strong co-production model for consultation and book selection.
The situation regarding LTCs is less than clear. Although many self-help books are available that cover LTCs in general, very few appear to be evidence-based or derived from clinical evaluations or trials. A few titles have been based on educational programmes31 that have tended to be delivered in a group format (see next section). Some are extensions of well researched interventions such as CBT32 or mindfulness33 that have been applied to specific LTCs. However, very few, if any, of these books are specifically recommended in NICE clinical guidelines. This is in contrast to the RWBOP common mental health conditions list, where direct links with NICE could be made.
In order to summarise the potential links between NICE and a list for RWBOP for LTC, we have scanned and summarised the relevant NICE guidance and identified either specific psychological approaches or self-help materials that might form the basis for recommendations for a list. A useful reading list and summary of the LTC literature was published by the King’s Fund34 in 2014. We have also scoped various systematic reviews of LTCs and searched the literature for relevant psychological interventions, self-help strategies and self-management and support programmes. We will also aim to foster an active dialogue with people with LTCs, relatives, carers, professionals and charities concerning additional titles not necessarily associated with NICE guidance that should also be considered. Given the absence of clinical trials or evaluations of specific titles, we believe that professional endorsement, together with the views of people with lived experience of LTCs, will be major components of the book selection process. A library survey of existing titles regarding LTCs and the extent to which they have been borrowed will also inform the later book selection process.
5.2 NICE35 and long-term conditions
There are three sources of NICE guidance that are relevant to the development of the book list. First, there have been several general guidelines about LTCs, together with care planning for older people. There are also condition-specific NICE guidelines (for example, diabetes, epilepsy), which cover the majority of conditions relevant to our list. Finally, there are NICE guidelines for mental health conditions such as depression, which is often seen as a LTC in itself, plus specific NICE guidance for depression experienced by people with LTCs.
General guidance
NICE guidelines (NG22) provide the framework for integrated care planning, self-management and support for carers of older people with multiple LTCs. It stresses the importance of accessible and good quality information at every stage of the development of the patient’s care plan. It also stresses providing relevant information and support to carers. Guidance that is about to published (expected September 2016) on
31 Living a Healthy Life with Chronic Conditions: For Ongoing Physical and Mental Health Conditions - Kate Lorig, Halsted Holman, David Sobel (2013)
32 Overcoming chronic pain - Cole et al (2010)
33 Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing - Burch et al (2013)
34 Library reading list: long-term conditions - The Kings Fund (2014)
35 National Institute for Health and Care Excellence [NICE]
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multi-morbidity in LTCs will also help select those at risk and who would particularly benefit from more intensive and individualised care. Although it is doubtful that older people with multi-morbidity may benefit directly from RWBOP, relevant information from a LTC list, together with the RWBOP for dementia list, might benefit relatives and carers.
Specific NICE guidance
Most individual conditions such as asthma (QS25), arthritis (CG79), diabetes (CG87) and epilepsy (CG137) have individual NICE clinical guidelines about treatment and management. Generally, they all emphasise the importance of providing good quality information to patients and their relatives from the time of diagnosis onwards. Good quality, according to NICE, means individually tailored to the patient’s level of understanding and designed to be accessible. Providing information is said to improve a patient’s understanding of their condition, which can then help motivate them to control their symptoms through self-management. Indeed, it is argued that good information provision leads to an increase in perceived control over the condition (i.e. self-efficacy) and also better understanding (for example, health literacy). The latter is seen as a good predictor for positive outcomes in treatment trials of people with LTCs.36 Individual guidance for asthma and diabetes particularly recommend setting up psycho-educational groups to encourage self-management of the condition. It also suggests that information sessions and support should be offered on an individual basis to both patients and carers.
For some LTCs, specific psychological interventions are also mentioned:
For rheumatoid arthritis (CG79), psychological interventions such as stress management and relaxation, together with cognitive coping skills, are recommended.
For asthma (QS25) and chronic obstructive pulmonary disease (CG101), psychological approaches to breathing control are suggested as components of an education programme.
For stroke, the teaching of psychological principles within rehabilitation programmes is stressed.
For epilepsy (CG137), psychological interventions such as CBT, relaxation training and biofeedback are recommended.
NICE guidelines for some specific conditions such as coronary heart disease (CG108), stroke (CG162), multiple sclerosis (CG186) and chronic kidney disease (QS25) all emphasise the importance of detecting depression and making adequate provision for treatment.
We have dealt with some of the most common NICE clinical guidelines referring to LTCs; others also exist
(for example, chronic fatigue syndrome, chronic pain and irritable bowel syndrome) but space prevents comprehensive coverage.
etc
The remaining references for this document are:
37 Improving information and understanding - National Voices (2016)
38 A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions - National Institute of Health (2014)
39 Good practice guidance on the use of self-help materials within IAPT services - NHS England
40 Personalised care planning for adults with chronic or long-term health conditions - Coulter - 2015 - The Cochrane Library - Wiley Online Library
41 A meta-analysis of health status, health behaviours, and healthcare utilization outcomes of the Chronic Disease Self-Management Program - Brady et al (2013)
42 Supporting self-management: helping people manage long-term conditions - The University of York (2015)
43 Self-help interventions for symptoms of depression, anxiety and psychological distress in patients with physical illnesses - Matcham et al (2014)
44 Effectiveness of Cognitive Behavioural Self-Help for the Treatment of Depression - Farrand & Woodford (2015)
45 Adapting Cognitive Behavioural Therapy Interventions for Anxiety or Depression to Meet the Needs of People with Long-term Physical Health Conditions - Hadert (2013)
Full consultation document here: http://www.bsrm.org.uk/downloads/rwbopforltcconsultationpaperaug16.pdf
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