SupportingPeoplewithLong-Term … 2 08 Background TheContext Around two million people in Scotland...

Supporting People with Long-TermConditions to Self Manage:An Essential Guide to Multi-AgencyKnowledge and Skills

Contents 03

SECTION 1:Introduction 5

Development of Guidance 6

SECTION 2:Background 8

SECTION 3:Knowledge, Competencies, Capabilities,and Skills 12

APPENDIX 1:Glossary of Terms 28

APPENDIX 2:Long-term Conditions Alliance Scotland(LTCAS) Self-management Principles 32

APPENDIX 3:Knowledge and Skills Required forCapabilities 34

APPENDIX 4:Literature, Policy, Standards andCompetencies/Capabilities 46

This guidance has been developed for the South East Region of Scotland by the South East Region Long-TermConditions Partnership Project (full contact details can be found on the back cover). As part of the developmentprocess workers across the region were consulted to refine usability and ensure ‘fit for purpose’.

The project team recognise that the guidance may have applicability across Scotland and therefore extends theinvitation for the guidance to be shared with multi-agency workers.

A glossary has been included in Appendix 1

Introduction 05Section1

Why the Guidance?This guidance identifies the core knowledge, skillsand competencies/capabilities that enable health,social care and voluntary sector staff to supportpeople to manage their conditions.

This guidance will:• Signpost staff to current policy, learning materials

and related competency/capability frameworks.

• Provide guidance on “how” to enable supportedself-management

• Consider opportunities to supportself-management in practice

• Support career progression

• Facilitate role re-design and service improvement.

Who is it for?• Multi-agency staff who support people with

long-term conditions (LTCs) in any setting

• Staff from all disciplines and working at alllevels of practice

• Recruitment, workforce planning anddevelopment leaders.

How to use itAs a practitioner/worker:

• Identify your skills, knowledge, experience anddevelopment needs1

• Tailor your knowledge and competency to thecomplexity of the condition(s) of the peopleyou support

• Understand the local and national context forlong-term conditions and self-management.

As a team leader, manager or educationalist:

• Understand what competencies staff require andthe learning resources available

• Tailor staff competency to the complexity ofsupport required

• Understand the local and national context forlong-term conditions and self-management.

Please note that as different levels of practice varyamongst staff groups the knowledge level at whichthe worker performs the capabilities/competenciesoutlined in this document should be appropriate totheir role and responsibility.

1 For NHS staff this includes the NHS Knowledge and skillsFramework (KSF). A booklet mapping this guidance to KSFis appended to the back cover.

Section1

Development of the06

Acknowledgements

South East Region Self-management Initiative

This guide was developed by the South East (SE)Long Term Conditions Partnership Project, fundedby NHS Education for Scotland (NES). The Steeringgroup has representation from NHS Borders,NHS Lothian, NHS Fife, NES, Regional WorkforcePlanning, Regional Social Services and Long-termConditions Alliance Scotland. It provides strategicdirection, ensuring the project meets therequirements of local boards and links toregional and national initiatives.

Following scoping and stakeholder engagementwork, this long term conditions project is focusingon self management. This has been informedthrough local, regional, and national groups andinput from stakeholders across health, voluntarysector, and social care. The project has alsoincorporated service users to inform theinfrastructure within the project.

The project is working towards creating and pilotinga workforce development toolset (figure 3) forself management which is inclusive of modelsand education, that will be fit for purpose, costeffective and meets the supported selfmanagement framework objective that each ofthe three participating Health Boards are requiredto achieve as outlined in Better Health BetterCare (2007).

Figure 3 – Supported Self-managementWorkforce Development Toolset

The South East LTC Partnership Project would liketo thank all those who have helped to develop thisguidance. We are particularly grateful to themembers of our advisory groups.

Supported SelfManagement

WorkforceDevelopment

Toolset

Links

CareerFramework& KSF Links

WorkforcePlanningSupport

GenericCompetencies/

Capabilities

Core Knowledge

LearningNeeds

AnalysisTool

EducationProvisionDatabase

on E-LibraryPortal

Models ofSupported

SelfManagment

Guidance 07

Advisory Group Membership

Group 1

Maggie Byers – Lead Practitioner for non-registeredworkforce, NHS Lothian

Dr Fiona Gailey – South East Board and RegionalEngagement Team, NHS Education for Scotland

Julie Gardner - Assistant Director, Voice of CarersAcross Lothian (VOCAL)

Ross Grieve – Long-term Conditions ServiceManager, The Thistle Foundation, Edinburgh

Christine Hoy – Senior Programme Manager, SelfCare, Scottish Government

Helen McBride – Learning and Development Adviser,Workforce Planning and Development, Departmentof Health and Social Care, City of Edinburgh Council.

Rosemary Rae – Independent Consultant workingfor NHS Lothian

Colin Murray – Service User, NHS Lothian

Group 2

Paula Aldin-Scott – Communication &Development Officer, Scottish Social ServicesLearning Network – South East

Katrina Balmer – Dementia Care Co-ordinator,NHS Lothian

Shena Black – Respiratory Care Facilitator, WestLothian Community Health and Care Partnership,NHS Lothian

Gill Cottrell – Locality Manager, West LothianCommunity Health and Care Partnership, NHSLothian

Paula Donaldson – Condition ManagementPractitioner, NHS Fife

Karen Gibb – Cardiovascular Charge Nurse, Kirkcaldyand Levenmouth Community Health Partnership,NHS Fife

Fiona Houston – Community Health PartnershipManager, NHS Borders

Wendy Laird – Carer & Member of Scottish SocialServices Learning Network Management Group

Dr James McCallum – General Practitioner, WestLothian Community Health and Care Partnership,NHS Lothian

Irene McDonald – Chronic Disease ManagementNurse, Glenrothes and North East Fife CommunityHealth Care Partnership, NHS Fife

Anne McEwan – Cardiovascular Specialist Nurse,Dunfermline and West Fife Community Health CarePartnership, NHS Fife

Lorna Stewart – District Charge Nurse, Dunfermlineand West Fife Community Health Care Partnership,NHS Fife

Louise Taylor – Lead Nurse,Heart Manual, NHSLothian

Additional AcknowledgementsSEAT LTC Partnership Project Steering Group

Janet Corcoran – Lead for Professional and RoleDevelopment, NHS Lothian

Cheryl Harvey – Project Manager,SE LTC Partnership Project

Sonya Hamilton – Project Officer,SE LTC Partnership Project

Section2

Background08

The ContextAround two million people in Scotland have at leastone Long-Term Condition (LTC).A LTC is defined as‘a health problem, which lasts for more than a year’(LTCAS 2007). Examples are epilepsy, asthma, diabetes,chronic obstructive pulmonary disease, dementia andheart disease.The World Health Organisation (WHO2005) views managing LTCs as the biggest challengefacing health care systems worldwide.Around 60%ofall deaths are attributed to LTCs.

Long-term conditions are more common withageing. Scotland’s population of over 75s willincrease significantly in the next ten years, leadingto more people with LTCs. People with LTCs aretwice as likely to be admitted to hospital andstay longer.

Matching Intervention to theDegrees of NeedThe NHS and Social Care model for improving carefor people with long-term conditions (Departmentof Health 2005) match interventions with level ofneed (Figure 1).

Level 3: Intensive Professional CareCase management approach – High intensity usersof unplanned hospital care are targeted for a case /care management approach that anticipates, co-ordinates and joins up health and social care.

Level 2: Shared CareCondition specific management – responsive,multi-disciplinary specialist services for peoplewith complex single or multiple conditions,using disease specific protocols and pathways.

Level 1: Supported Self Careworking with people and their carers to developtheir knowledge, skills and confidence to managetheir condition effectively.

Management of LTCs

LEVEL 3Intensive Professional Care

LEVEL 2Shared Care

LEVEL 1Supported Self Care

Complex cases withco-morbidities

3.5% of all cases

Higher risk cases15-20% of people withLong-term conditions

70-80% ofpeople withLong-termconditions

Professional Care

Figure 1 – Management of LTCs Pyramid(adapted from Delivering for Health, 2005)

Self Care

09

Supporting Self CareSelf-care is a key pillar of The NHS ImprovementPlan’s (Department of Health, 2004) vision for apatient-centred care system. It is also an importantstrand of the Scottish Government’s strategy forhealth (Better Health Better Care 2007).

Supporting self care is vital if we are to produce betterhealth outcomes, slow disease progression and ensurebetter management of those sudden deteriorationsoften associated with long-term conditions. Mostimportantly, it will improve the quality of life forpeople with long-term conditions. Self-care is thecare taken by an individual towards their own healthand wellbeing - in the context of their family, friends,neighbourhoods and local communities.

Supporting Self-managementSelf-management increases the capacity,confidence, and ability of the individual and theircarer to manage their conditions. Support forself-management is offered through appropriateinformation and education, self-diagnostic tools,and through a mutual partnership betweenprofessional and individual.

Support for self-management involves closecollaboration between the person with a long-termcondition and their care provider. Individuals,families, friends, unpaid carers and service providersshare information, agree goals and create apersonalised care plan to guide care at home

and in the clinical setting. It is not about careprofessionals handing over responsibility toindividuals. It is about helping people to gainmore control.

“Empowering individuals who use services to takean equal part in the decisions made about how tomanage their condition and care needs is central tosupporting self-management. There is a need formulti-agency workers to ‘share out’ some of theirpower and control, something that the paternalisticpractices of organisations may not have previouslyfacilitated” (Picker Institute 2007).

To move this agenda forward we need a culturalshift to support self-management.

Health and Social care systems should support self-management by helping people and their carers tohave greater knowledge, skills and confidence tomanage their condition. They will increase serviceproviders’ capability to respond to the needs andpreferences of the individual, and support apsychosocial and medical approach.

The Long-term Conditions Alliance Scotland(LTCAS) believes that the term ‘self-management’puts people at the centre of services and in thedriving seat. It is a partnership of a wide range ofagencies, carers and health professionals who viewself-management as dynamic and reflecting anethos of empowerment (LTCAS 2007).

Section2

Background10

Service Users and SupportedSelf-managementThe Long-term Conditions Alliance Scotland (LTCAS)has undertaken considerable work with thevoluntary organisations who work with people withlong-term conditions. In the process, it hasidentified what people would really like to be madeavailable to enable supported self-management.

Being InvolvedPeople with long-term conditions andtheir carers want:

• NHS workers to be better listeners and tobelieve what they and their carers tellthem

• To decide what happens to them

• NHS workers to understand what carersdo, give them more support andinformation about other services

• Carers, if the person they support can’tremember things, to be allowed to see thedoctor with them

• Help for carers at times when they cannotbe there and in emergencies.

Working Together/NHSPeople with long-term conditions andtheir carers want:

• One person in the NHS who they can talkto – this person is called a key worker

• The key worker to seek information,support the person and their carer, knowwhere to get more help and to help dealwith things like money and benefits

• NHS workers to be better at telling thembad news

• NHS experts to support people withlong-term conditions

• To talk to counsellors, especially whenthey are told that they have a long-termcondition

• Key workers to tell them whatservices are available and for the NHSto arrange this

• The NHS, local councils and voluntaryorganisations to work together and makethings better

• To choose where they get a service from.

11

Communication and InformationPeople and their carers want:

• To get the right information

• Better information when they are first told about their condition and, this information froma key worker

• Better information about, services and voluntary organisations that can help them

• Information to be accessible and leaflets easy to read

• All the information about their condition written down and in one place. This ‘patientpassport’ can then be easily shown to someone who they meet for the first time

• NHS staff to use words they understand

• To be treated fairly, regardless of their condition. Newspapers, radio and television need tobe careful about how they show people with long-term conditions

• The public to understand more about their conditions.

Section3

Capabilities, Competencies12

Knowledge and Skills to EnableSupported Self-ManagementAll multi-agency staff that provide self-management support require core knowledge andskills. This is a consensus from academic research,analysis of current capability and competencyframeworks, and recommendations from twomulti-agency advisory groups. ‘Core knowledge andskills’ are those abilities fundamental to enablingself-management and are common to alldisciplines, at all levels and across all agencies.

Core Knowledge and Skills required

Equality, Diversity, Dignity, and Respect

Supporting Emotional, Psychological, Social,Cultural, Spiritual, and Physical Needs

Being in Partnership

Shared Learning

Health Literacy Skills

Shared Decision Making

Multi-agency Approach and Support

Self-management Principles (Appendix 2)

Learning themesIn addition to this ‘Core Knowledge and Skills’there are some key important learning themes.These themes are listed in this section and arenot ranked in order of importance.

Health & Wellbeing

Behavioural Change

Support Networks

Promoting Independence

Partnership Working

Each theme has a number of key capabilities.These can be found on pages 14-15.

The competencies required to undertake eachcapability can be found from page 16 -26.

Appendix 3 details the knowledge and skillsrequired to undertake the competencies.

Knowledge and Skills 13

Supporting theSelf-management journeyEach person who develops a long-term conditionis on a personal journey – it starts with thediagnosis and then goes through a series of keystages. During this journey they may requiresupport. It is important that this support is flexible

and individuals can choose what type of supportthey need to help them manage their condition.

Figure 2 maps the knowledge and skills to the keystages of this journey. It is a fluid process howeverand depends on the choices and decisions peoplemake around their personal needs.

PATIENT PATHWAYOPPORTUNITIES FOR

SELF MANAGEMENT

SELF MANAGEMENT PRINCIPLES

EQUALITY, DIVERSITY, DIGNITY AND RESPECT

SHARED LEARNING

HEALTH LITERACY SKILLS

SHARED DECISION MAKING

MULTI-AGENCY APPROACH

SUPPORTING EMOTIONAL, PSYCHOLOGICAL, SOCIAL, CULTURAL, SPIRITUAL AND PHYSICAL NEEDS

BEING IN PARTNERSHIP

Diagnosis

CORE

KNOWLEDGE

AND

SKILLS

Living for Today Progression Transitions End of Life

Promoting

Independence

SupportNetworks

Partnership

Working

Figure 2 - Service users’ journey linking to Core Knowledge and Skills and Learning Themes.

Adapted from unpublished work by G. Knowles and C. Tester, Cancer Strategies and Genetics team,Healthcare Planning Division, Health and Wellbeing Directorate, Scottish Government, 2007.

Section3


Promoting Health &WellbeingThe health and wellbeing of people withlong-term conditions, depends on a positiverelationship between staff and the individual andcarer. This relationship involves monitoring forchanges in their condition, identifying actions thatneed to be taken, exploring the impact of changeson the individuals/carers, and keeping theminformed about how and where to seek assistanceand how to cope with any changes in their healthand wellbeing.

CCaappaabbiilliittiieess

Work in partnership with individuals and carersto promote health and wellbeing.

Ensure individuals and carers are well supportedduring significant life events and transitions

Enable individuals and carers to cope withchanges to their health and wellbeing

Enable individuals and carers to accesspsychological support

Behavioural ChangeHelping people with long-term conditions tomake positive lifestyle choices improves theirquality of life. Staff can help reduce longer-termcomplications by addressing health relatedbehaviours including diet, lifestyle and physicalactivity. The role of the worker is to work with theindividual to identify goals and a plan for change –this is achieved by discussion and agreement.

Workers should:

• Provide appropriate techniques (e.g. coaching,motivational interviewing, and briefinterventions) to encourage learning andbehaviour change.

• Following assessment, provide information andadvice to support involvement in occupational,leisure and everyday activities that enhancehealth and wellbeing.

Capabilities

Enable individuals’ learning and behaviourchange through coaching

Help individuals to change their behaviour toreduce the risk of complications and improve/maintain their quality of life

Provide information and advice to supportindividuals in taking up occupational and non-occupational activities


Support NetworksWorkers should work with individuals to helpthem access the support networks best suitedand available to them. A wide range of supportivenetworks is available and each meets an individual’sneeds in a different way. A key aspect is to promotediversity and encourage support networks to beeffective, inclusive and self-managing. Supportnetworks can include carers, family or friends, as wellas social care, health and voluntary sectors.

Capabilities

Empower individuals and carers to express theirviews and organise their own support, assistanceor action

Assist individuals and carers to evaluate andcontact support networks

Promoting independenceTo promote an individual’s independence, workersshould encourage and support them to take part in social, economic and cultural activities and join networks in the community. Independencemeans self-determination, respect and equalopportunity. It recognises that all of us needsupport to do what we do each day; no one is trulyindependent but they have the right to decide whatsupport they need and from whom. These choicesshould be heard and respected.

Capabilities

Enable individuals and carers to take part in arange of activities and join networks in thecommunity

Help individuals to use equipment to aid theirindependence

Partnership WorkingIndividuals and carers should be full, activeand respected partners. This approach meansresponding to the aspirations of individualswho want as much control as they can of theircondition and the treatment. It needs continuityand consistency in how they are treated andconsulted by workers. A worker partners theindividual and other organisations (social, voluntary,health) to ensure a personalised, supported, andcoordinated approach to self-management.

Capabilities

Build a partnership between the team, individual and carer

Assess, plan and implement specific parts of anindividual’s self-management plan

Empower families, carers, and others to supportindividuals

Section3


Health & Wellbeing

Capability Work in partnership with individuals and carers to promote health and wellbeing

Competencies

Communicate with individuals with long-term conditions and their carers in a manner that:

• Is appropriate to them

• Encourages open and frank exchange of views

• Minimises constraints

• Is free from discrimination and oppression

• Ensures shared decision making

Provide information to individuals and carers on:

• Health and wellbeing related to individual LTCs

• The impact of stress on health and wellbeing

• Good practice on promoting, maintaining and improving health and wellbeing

• Support different agencies offer to help improve settings

Involve individuals and carers in assessing the risks to health and wellbeing in relation to individual LTCs

Negotiate and agree with individuals and carers:

• The risks to their health and wellbeing

• How the risks and challenges can be addressed

• A plan of action to improve/maintain health and wellbeing

• How changes will be evaluated


Encourage those involved in maintaining/improving health & wellbeing to:

• Seek support when they need it

• Monitor progress

• Identify changes to plans

Maintain contact and provide support required within an agreed timescale.

Capability Ensure individuals and carers are well supported through significant life eventsand transitions

Competencies

• Respond effectively to individuals’ and carers’ major life changes or losses – this includes physical, practical,psychological, social, cultural, and spiritual aspects of care

• Ensure emotional impacts on individuals and carers are recognised, and psychological and social support arevalued, available and provided

Capability Enable individuals and carers to cope with changes to their health and wellbeing

Competencies

• Establish a supportive relationship with the individual and carer and agree roles and responsibilities

• Explain clearly to individuals and their carers the reasons for the changes to their health and wellbeing andthe likely consequences

• Explore what assistance individuals and their carers require to cope with changes to their health and well-being

• Identify areas where support can be improved

• Ensure all relevant agencies have the information they need to help the individual and their carers cope withchanges

• Support individuals and carers to monitor the assistance they receive and identify areas that can be improved

Section3


• Identify and prioritise actions required if an individual’s needs are not being fully addressed

• Screen the individual for anxiety and depression, ensuring that psychological care is planned accordingly

• Check the individual’s understanding of their condition

Capability Enable individuals and carers to access psychological support

Competencies

• Discuss and identify with the individual the impact of their condition(s) and its treatment on their quality oflife

• Identify and discuss with the individual how to cope with day-to-day living and how that fits with the realityof managing their condition(s)

• Explore with the individual the psychological impact and coping strategies for the disease and its treatment(eg beliefs surrounding the illness, effect on activities of daily living, the individuals emotional reaction andcoping mechanisms)

• Interpret the emotional impact of information given to the individual and carer on their condition or treatmentand how this affects the, the individual and carer

• Discuss with individual and carer the role of specialist services when the individuals’ require it and then referthe individual

• Brief the team about changes the individual seeks in the way they are treated – ensuring he or she receivesindividualised support


Behavioural Change

Capability Enable individuals’ learning and behaviour change through coaching

Competencies

• Assist the individual to identify their needs and learning styles

• Analyse the skills needed by the individual and carer to enable behavioural change and the order they needto be learned in

• Choose a style of coaching that meets the learning styles of the organisation

• Coach in a manner and at a speed appropriate to the individual

• Regularly check that individuals make progress towards agreed changes in behaviour to improve/maintainhealth and wellbeing

• Give individuals positive feedback on the learning process

• Alter coaching following individual’s feedback and progress

• Identify barriers to learning and review this with the individual

• Give individuals opportunities to practice skills, apply their knowledge and get experience in a structured way

• Give individuals clear and accurate information about resources available to help them apply their learning

Capability Help individuals to change their behaviour to reduce the risk of complications, andimprove/maintain their quality of life

Competencies

Encourage individuals to:

• Seek and create opportunities to express their views and requirements for support, assistance, or action

• Identify practical changes in behaviour that could improve/maintain their health and wellbeing

• Recognise the benefits of changing their behaviour and the alternatives available to them

• Value themselves positively and recognise their ability to change

Section3


Explore:

• The motivation of the individual regarding changing their behaviour

• Challenges individuals may face in attempting to change their behaviour, and how they can be addressed

• Support and resources available to help them change behaviour

Identify with individuals a range of strategies for changing their behaviour, which are consistent with:

• Their condition and personal circumstances

• Risks associated with their behaviour

• Evidence of how to achieve behaviour change

• Local or national public health initiatives

Where individuals agree to develop a plan to change their behaviour, help them to identify:

• Realistic short and long-term goals

• A realistic plan for achieving the goals

• When and how the plan will be reviewed

Provide information on facilities or support to help individuals to change their behaviour

Make an accurate record of the plan which can be followed up by other members of the care team,the individual, and/or carers

Encourage individuals to value their attempts and achievements in changing their behaviour andprovide positive support and reinforcement when they have achieved less than they expected.


Review with individuals:

• How they can maintain their new behaviour

• How to deal with any problems they encounter

• Whether they are making effective use of the support available to them

• Whether the plan should be adjusted in the light of progress to date

Agree arrangements for supporting individuals that are consistent with:

• The agreed plan for change

• The need for support

• The resources available for support

Encourage individuals to seek further support from you and from others when required

Capability Provide information and advice to support individuals in taking up occupational andnon occupational activities

Competencies

• Refer to previous assessments of the individual’s rehabilitation needs

• Gain understanding of the individual’s values, beliefs and interests through discussion with he or she (alsowith family members, carers and others if appropriate)

• Identify the individual’s desired everyday activities (i.e. occupational and leisure)

• Identify the physical, emotional, psychological, cultural and social demands of the individual’s everydayactivities

• Negotiate steps towards achieving the individual’s desired everyday activities

• Encourage and motivate the individual to achieve realistic objectives

• Adapt communication styles according to the needs and abilities of the individual

Section3


Support Networks

Capability Empower individuals and carers to express their views and organise their own support, assistance or action

Competencies

Where appropriate:

• Help individuals to express their views and requirements

• Act in ways which respect diversity and dignity, and promote equality

• Support individuals to access information that helps them organise their own support, assistance or action

• Provide information on support networks

• Enable individuals to arrange for support, assist them act, and refer to appropriate advocacy services

• Accurately record an individual’s views and requirements and ensure their needs and preferences are addressed

Capability Assist individuals and carers to evaluate and contact support networks

Competencies

• Identify appropriate support networks for individuals by matching their needs, personal beliefs, preferences,interests and wishes, and discussing with the individuals concerned

• Make clear the boundaries of your role in supporting the individual and their network to those who need toknow

• Discuss how the support network meets the individual’s needs


Promoting Independence

Capability Enable individuals and carers to take part in a range of activities and join networks inthe community

Competencies

• Encourage individuals and carers to seek information about appropriate networks

• Seek and provide information that helps individuals choose their involvement with relevant networks

• Create opportunities to support individuals to participate in networks they choose, and minimise barriersto accessing these networks

• Support and assist individuals to take part in relevant networks, and to seek advice when needed

Capability Help individuals use equipment that aids their independence

Competencies

Assessment:

• Work with individuals and carers to select appropriate assistive equipment

• Work with individuals to choose their preferred learning style

• Provide demonstrations and instruction on equipment use, in line with their learning style

• Check understanding through educational techniques, such as ‘closing the loop’ or ‘teach me back’

• Agree relevant trial and review periods and co-ordinate with self-management plan

Implementation and Maintenance:

• Encourage individuals and carers to seek further training on equipment if required

• Assist individuals and carers to identify risks and minimise hazards - encouraging safe use, transportation,and maintenance of equipment

• Help individuals and carers to assess progress, the equipment and review its use

• Signpost to relevant support services as needed

Section3


Partnership Working

Capability Build a partnership between the team, individual and carer

Competencies

• Identify areas in which individuals and carers can participate and take more control of their care,through shared decision making and learning

• Identify and use existing organisational resources to develop an individual’s involvement

• Provide information at jointly agreed times so the individual and carer feels supported and involved(e.g. during the progression of the condition)

• Identify the degree to which an individual and carer may wish to become ‘experts’, through shareddecision making

• Respect individuals’ decision to not be involved (if this is the case)

• Ensure the self-management plan is consistent with the level of participation requested by individual or carer

• Establish and evaluate feedback and response mechanisms between individual, carer, and the team.

• Ensure individual and carer understand what skills they have to learn

• Involve members of the multi-agency team and community staff who have explanations to offer or need tounderstand the individual’s and carer’s roles

• Facilitate where possible, an open, interactive process where the pace and subject matter of the activity isled by the individual

• Provide follow-up support in different formats (including printed material, web page, telephone helpline),agree on the format and timing of follow ups and a pattern of review

• Make sure the individual knows what procedure to follow if equipment or services fail


Capability Assess, plan and implement specific parts of an individual’s self-management plan

Competencies

• Work with the individual to implement activities appropriate to them and their identified needs

• Get background information needed to allow the assessment to proceed effectively

• Seek confirmation of the individual’s and carer’s understanding of the assessment, the interventions proposedand their expectations of the team’s services

• Identify the purpose of the supported self-management plan and how this meets the needs of the individual -in discussion with relevant others

• Give individuals information, guidance and support that enables them to participate effectively and agreehow their needs are best met

• Maintain effective communication with the individual and carer, and encourage them to commentconstructively on the process

• Co-ordinate your actions with other workers, clarifying your role in the overall management plan

• Seek advice, clarification and support from other members of the team if you have concerns about thesupported self-management plan, the individual’s needs, your role in meeting these needs, and others’roles in meeting these needs

Section3


Capability Empower families, carers, and others to support individuals

Competencies

• Encourage carers, family and friends to participate in those aspects of the individual’s care agreed by theindividual

• Provide carers and families with information about the support required by the individual

• Make sure the information provided meets the individual’s wishes as to who should be involved in their careand what information they should be given

• Make sure actions recognise individuals’ rights to make their own decisions in the context of their lives andrespect the rights of individuals to change their minds

• Encourage and support carers and families to express their views about the support they can provide forindividuals

• Give carers and families sufficient time, opportunity and support to discuss their feelings, concerns and theover all self-management plan

• Provide carers and families with information about support services and facilities which are useful to themand consistent with their self-management plan

• Identify positive goals for the individual to which carers and families can contribute

• Encourage and support carers and families to develop the skills necessary to provide care for the individualwhich is consistent with the self-management plan

• Exchange information with individuals, carers, families and colleagues on progress the individual is makingtowards positive goals

• Encourage carers and families to seek clarification and ask questions when they are concerned and need help

Appendix 1:

Glossary of Terms28

Being in PartnershipA partnership is a relationship between individualsor groups characterised by mutual cooperation andresponsibility, towards a specific goal. It involves anumber of partnerships - between individual andworker, service user and carer, carer and worker,workers between agencies/disciplines,individuals/carers and agencies etc.

CapabilityCapability is the extent to which individuals canadapt to change, gain new knowledge, and continueto improve their performance.

CarerA carer is a person who is unpaid and looks after orsupports someone who needs help with their day-to-day life. They may be family members, includingchildren and young people, who live with theperson they care for. Or, they may be family, friendsor neighbours who live elsewhere.

Case ManagementCreating a coordinated, ongoing and personalisedstrategy for individuals who have a variety ofhealthcare needs – these include the elderly andthose with long-term conditions. A primary carepractitioner acts as a case manager, planningspecialist referrals and giving continuity to theseparate services delivered.

CompetenceCompetence is what individuals know or are ableto do in terms of knowledge, skills and attitudesat a particular point in time.

Disease Specific Care ManagementThis involves providing people with a complexsingle need or multiple conditions with responsive,specialist services using multi-disciplinary teamsand disease specific protocols and pathways.

Equality, Diversity, Dignity, and RespectEquality is about creating a fairer society in whicheveryone can participate and fulfil their potential.

Diversity refers to other individual differences andcharacteristics by which persons may self-define.This includes age, gender, sexual orientation,religion or spiritual identification, physicalability/disability, social and economic classbackground, and residential location. Diversitypractice recognises and values difference in itsbroadest sense, for the benefit of the patients,carers, members of the public and colleagues.

Dignity involves respect, privacy, autonomy andself-worth. It is a state, quality or manner worthy ofesteem or respect; and (by extension) self-respect.Dignity in care means the kind of care, in anysetting, which supports and promotes, and does notundermine, a person’s self-respect regardless of anydifference. Respect is to show consideration for;avoid intruding on or interfering with;consideration; courteous regard.

This also covers the application of relevant legalframeworks.

29

Health LiteracyHealth literacy is the degree to which individualsobtain, process, and understand the basic healthinformation and services they need to make theright health decisions. How much does theindividual and carer understand health relatedinformation and concepts? This also involvesproviding the right information at the right time.

Key WorkerA key worker is a named person who individualsand carers can approach for any matter related totheir condition. He/she is responsible forcollaborating with professionals from differentservices, ensures access to, coordination anddelivery of services from different agencies. The keyworker seeks information, supports the person witha condition and their carer, knows where to go toget more help, and helps the person deal withthings like money and benefits.

Long-term ConditionsA long-term condition is ‘a health condition’ thatnormally generally lasts for more than a year, andaffects any aspect of a person’s life’ (LTCAS 2007).Symptoms may come and go and there is usuallyno cure. There are however, things that can be doneto maintain or improve the person’s quality of lifeand wellbeing. Examples include epilepsy, multiplesclerosis, asthma, diabetes, and chronic obstructivepulmonary disease (COPD -which includes anumber of conditions such as emphysema andchronic bronchitis).

Multi-agency Approach and SupportThis is close collaboration and joint working acrossagencies. It requires services to have knowledge oflocalised support networks and be able to signpostindividuals and carers to these networks – helpingindividuals make positive choices. This approachalso reduces duplication across agencies.

Self CareSelf-care is the care taken by individuals towardstheir own health and wellbeing, and includes careextended to their family, carers, friends, and othersin neighbourhoods and local communities.

Self-Management PrinciplesFundamental to supported self-management isthe ability to develop therapeutic and trustedrelationships. The self-management principles,created by the Long-Term Conditions AllianceScotland, is found in Appendix 2.

IndividualFor this document, individuals are people withlong- term conditions.

Appendix 1:

Glossary of Terms30

Shared Decision MakingIn Shared Decision Making, the intention is thatthe individuals and professionals/workers sharethe process of decision-making and ownership ofthe decision made. Shared information about valuesand likely treatment outcomes that are achievableis essential, but the process also depends on acommitment from both parties to engage. Thismeans achieving agreement through discussion.The professional should be prepared toacknowledge the individual’s preferences andchoices, and the individual has to accept sharedresponsibility for the treatment decision (Coulter1999). Shared Decision Making can involve carers,families, and friends at the individual’s discretion.

Shared LearningThis is a two-way approach, which involvesthe sharing of knowledge, skills, attitudes andunderstanding between the professional/workerand the individual. This involves the sharing of trust,and involves carers, families, and friends at theindividual’s discretion.

SignpostingSignposting is referring people and carers to otherrelevant agencies and services. This can includesocial services, voluntary organisations, supportgroups and health services. If they are to signposteffectively workers must know of services availableand of the multi-agency/interdisciplinary approach.

Supporting Self-ManagementSelf-management is the outcome of the personand all appropriate individuals and servicesworking together to support him or her to dealwith the implications of living the rest of theirlife with one or more long-term condition.Supporting self-management involves enablingpeople with long-term conditions to develop theconfidence, knowledge, and skills needed tosustain their wellbeing - this involves partnershipworking and includes all care available.

Working KnowledgeIt is the application of factual knowledge in amanner that takes account of widely understoodprinciples and theories and implications withinthe field of practice.

Appendix 2:

Long-term Conditions 32

Self-management Principles

These principles were developed by LTCAS to sum up the Strategy for Self-management. They provide auseful tool for underpinning work done to support self-management. The principles reflect the approachpeople need from services and workers to enable them to self-manage.

“I am a whole person andthis is for my whole life”

My needs are met along my life journey withsupport aimed at improving my physical,emotional, social and spiritual wellbeing.

“Be accountable to me andvalue my experience”

Evaluation systems should be ongoing andshaped by my experience. They should benon judgemental and focus on more than

medical or financial outcomes.

Alliance Scotland (LTCAS) 33

“Self management is not a replacement forservices. Gaun yersel doesn’t mean going it alone”

Self management does not mean managing my long term conditionalone. It’s about self determination in partnership with supporters.

“I am the leading partner in management of my health”

I am involved in my own care. I, those who care for me and organisationsthat represent me, shape new approaches to my care.

“Clear information helps me make decisions that are right for me”

Professionals communicate with me effectively. They help ensure I have high quality, accessible information. They also support my

right to make decisions.

Appendix 3:

Knowledge and Skills34

Working as a member of multi-agency team andappropriate signposting

A working knowledge of:

• The principles of multi-agency working and howit contributes to better care

• How multi-agency working differs from othermodels of care provision, and its limitations

• The role and availability of other workers onthe multi-agency team who contribute to thesupported self-management plan, and thebenefits each brings

• Your role in the multi-agency team and how itrelates to other team members

• The purpose of clarifying your own role and thatof others when working with different individuals

• Why effective communication is vital in anmulti-agency team

• The philosophy and approach of the multi-agencyteam and its members

• Your responsibility to keep records

• Methods of coordinating your work with thatof others

• The importance of integrating physical, practical,psychological, cultural, social, and spiritual aspectsof care

• The purpose of sharing information on supportnetworks with colleagues

• The contribution different professions make tothe evaluation and planning of individual care

• From whom to seek support when you haveconcerns about the supported self-managementplan and its effectiveness

• Types of support and assistance individuals need atdifferent times and in different contexts, and howto access these (e.g. day services, vocationalservices, support groups, specialist palliative careteams)

• The types of support available to carers andfamilies such as self-help groups, counselling,respite, and how to access these

• The information and guidance available forworkers, individuals and their carers, and howto access this

• Why it is important to keep up-to-dateinformation on support networks and thosewho hold information on them

• Contact details of local and national supportgroups

• How individuals access local facilities forexercise and physical activity, education andcommunity activities

• Availability of local rehabilitation andrecreational services

• The benefits support networks bring, especiallyin helping individuals to maximum independencein establishing and maintaining their ownsupport networks

• How those acting in a carer or support role toindividuals are also in need of support networks.

required for Capabilities 35

Communication and interpersonal skills


• Negotiation and communication skills in workingwith others

• Why it is important to clarify with the individualwhether they need and have carers, and toconfirm with the person whether they accepttheir carers having any say over their care

• How to communicate effectively with individualsand their carers

• How carers can be involved in decision making inorder to deliver the most effective outcome forthe individual

• The types of communication and relationshipdifficulties that occur with and betweenindividuals and their carers, and how toovercome them

• The importance of focusing on the service useras an individual

• The importance of respecting differentbackgrounds and values of people

• The impact of the ageing process on peoples’communication needs e.g. sensory impairment,cognition and confused states

• The effects of environments and contexts oncommunication (particularly institutional settings)

• How communication can be modified and alteredfor different needs, contexts and beliefs

• How to ask questions, listen carefully, empathiseand summarise back, and how to adaptcommunication styles appropriate to differentpeople (e.g. culture, language or special needs)

• How to understand an individual’s values,beliefs and interests

• How to promote shared decision-making.

Health and condition specific knowledge –Applicable to health only


• The impact of nutrition and physical exerciseon health and well-being

• The effects of smoking, alcohol and illicit drugson health and well-being

• Causes of relevant condition(s)

• Signs and symptoms of relevant condition(s)

• Normal and abnormal biochemical values

• How to monitor changes in condition(s)

• When to seek the advice of a specialist inrelation to specific condition management

• Typical progressive patterns of long-termconditions

Appendix 3:


• The disease process and major diagnosesassociated with relevant long-term conditionsand related co-morbidities (eg renal failure, heartfailure, depressions), drugs commonly used inthe treatment of long-term conditions andtheir potential side effects (particularly howthis might affect lifestyle)

• The effects of, and how to manage, inter-currentillness

• How to manage long-term conditions

• Long-term complications of long-term conditions(e.g. Diabetes) and when they are likely to occur

• The medications used to manage long-termconditions

• The main issues, debates, and policies relatingto the health and wellbeing of people withlong-term conditions

• The guidance available for workers’ own practice,and where to find it

• Evidence based practice, and its role inimproving services

• Trends and changes relating to the health andwell-being of people with long-term conditions

• The ageing process and how it affects the needsof older people

• Main health conditions that affect people asthey age

• Drugs and interventions used to manage age-related conditions and their effects on overallhealth and wellbeing

• How to seek advice on conditions and drugs

• Impact of social relationships and environmenton the health and well-being of people withlong-term conditions

• How the needs of people with long-termconditions affects others

• Transitions experienced by young people withlong-term conditions

• Potential bio-psycho-social impact of multiplelong-term conditions on individuals and theirfamilies

• The potential effects that modification of lifestyleand risk factors may have on individuals

• How to define relevant risk stratification (i.e. low,medium or high) and its role in rehabilitation

• How to support an individual through the endof life stage.


Equality and diversity


• Equality and diversity practice

• Working with individuals, respecting their privacy,dignity, wishes, and beliefs

• Causes of unequal access to mainstream provisionand how to resolve these through signposting andeducation

• The effects of stereotyping, stigmatisation,prejudice and labelling on people

• Own values and beliefs and how they couldimpact on work practises

• Who to notify about/or how to challengediscrimination and oppression withinorganisational structures and activities

• Why it is important to promote the dignityand self-esteem of the individual

Working in partnership with service users


• How to work in partnership with individualsand carers

• The importance of encouraging individuals andtheir carers to express their feelings aboutchanges to their situation

• The importance and effects of individualeducation and self-management

• The psychological impacts of long-termconditions, at diagnosis and in the long-term

• How to gather information from individualsabout their health

• The social, cultural and economic backgroundof the individual/carer group

• Implementing feedback into practice

• Why it is important to provide ongoingencouragement and positive feedback aboutachievements to individuals during activities,and the purpose of this

• How to arrange and manage the environment sothat it enables the individual to participate fullyand encourages their involvement

• Strategies and approaches to encourageindividuals to contribute fully to interventions

• How an individual’s culture, belief and preferencesaffects their involvement and attitude

• How culture, beliefs and preferences influencecommunication

• The importance of working with families, carersand others who may contribute or influence theoutcomes of self-management approaches

• Establishment of effective working relationshipwith families, carers and others, and methods youcan use to maintain contact with carers & families

• The types of behaviour you should adopt toshow respect and consideration forfamilies, carers and others.

Appendix 3:


Additional Knowledge and Skills, Specific to Capabilities

Capability Work in partnership with individuals and carers to promote health and well being

Knowledge and skills required

• Health and wellbeing – concepts, models and stressors

• Concepts, principles and models for promoting/maintaining health and wellbeing, highlighting different modelsof health promotion

• The contributions of different agencies to promoting health and wellbeing – Appraisal & Application

• Change management principles in the promotion of health and wellbeing and reduction of inequalities

Capability Ensure individuals and carers are well supported through significant life events andtransitions


• The general life stages, health needs and changes associated with a client group in receipt of the service(e.g. Dementia, palliative care, Diabetes)

• The impact of the individual’s experiences of change and loss on others in the setting or social network

• The availability of support systems for individuals experiencing specific kinds of change or loss


Capability Enable individuals and carers to cope with changes to their health and wellbeing


• Legal, Professional and organisational requirements

• Consent & Confidentiality

• The main changes that older people might go through during the process of ageing, and the transitions youngpeople undergo into adulthood

• The particular needs of different people with long-term conditions at different stages of their life

• The impact of different types of change on people with long-term conditions

• The fears and concerns which people and those close to them may have about the changes

• Methods of providing support to help people and those close to them to manage change

Capability Enable individuals and carers to access psychological support


• Information and knowledge management

• Knowledge of: Psychological therapies and counselling skills

• Interpretation of individuals’ emotional and psychological responses to their LTC and its treatment(eg recognition of depression)

Appendix 3:


Capability Enable individuals’ learning and behaviour change through coaching


The nature and role of coaching – a working knowledge of:

• How to match coaching opportunities to individual learning needs and objective(s)

• How to put information in order and use language appropriate for the individual

• The separate areas of coaching that encourage learning

• Which types of learning are best achieved and supported through coaching

• How to identify the opportunities available for learners to apply their learning

Principles and concepts of coaching – a working knowledge of:

• How to put learners at their ease

• How to identify individual learning needs

• Different learning styles and how they affect learning

• How to identify and use different learning opportunities

• How to structure learning activities

• How to choose and prepare appropriate materials, including technology-based materials

• How to encourage learners to recognise their own achievements

• How to recognise things that are likely to prevent learning, and how to overcome them

• How to check learners’ understanding and progress

• External factors influencing development


Capability Help individuals to change their behaviour to reduce the risk of complications,and improve/maintain their quality of life


• Change models that relate to and support behaviour change

• Models and techniques of behaviour change -communication skills such as motivational interviewing,and counselling skills/psychological therapies, which support behaviour change

• Risk and change management skills

• Organisational and legal issues

Capability Provide information and advice to support individuals in taking up occupationaland non-occupational activities


Active Living – a working knowledge of:

• How to identify the physical, psychological, emotional, cultural, and social demands of the individual’severyday activities

• How meaningful occupation/activity can contribute to an individual’s sense of wellbeing

• How to identify any resources or adaptations that will be required for the individual to undertake desiredeveryday activities, and subsequent signposting to other agencies appropriately if needed

Counselling skills and techniques –a working knowledge of:

• The range of motivations individuals may have for changing their behaviour and lifestyle, and how to assistthem in to discovering their motivations

• Basic counselling techniques and skills

• How to help individuals identify coping strategies

• Localised operational knowledge on how to obtain and interpret assessments of individuals’ rehabilitationneeds

Appendix 3:


Capability Empower individuals and carers to express their views and organise their own support, assistance or action


• Factors affecting an individual’s needs and/or abilities to organise support, assistance and to take direct action

• Factors which influence an individual’s self-esteem and their willingness and interest in interacting with others

• The principles and values of recovery

Capability Assist individuals and carers to evaluate and contact support networks


• Approaches to multiagency working with mutual support networks

Capability Enable individuals and carers to take part in a range of activities and join networks inthe community


• Factors affecting individuals’ needs and/or abilities to organise support assistance and take direct action

• Factors which influence individuals’ self-esteem and their willingness and interest in interacting with others

• Types of support and assistance individuals may need at different times and in different contexts, and howto access these

• Sources of information on networks and mainstream provision

• The principles and values of recovery

• The impact and effect of co-morbidities on the mental and physical health of an individual

• How to challenge assumptions in a constructive way that raises awareness and understanding


Capability Help individuals to use equipment to aid their independence


• Different learning styles, and how they affect learning; how to identify learning needs

• How to structure demonstrations and instruction sessions on different learning styles

• Factors likely to prevent learning and how to overcome these

• How to check learners’ understanding and progress (e.g. through ‘close the loop’ and ‘teach me back’)

• How to put information in order & decide whether language is appropriate for learner

• How to choose and prepare appropriate materials, including technology based materials

• The application of consultation and communication skills in working with individuals to assess needfor equipment

• The importance of encouraging individuals and carers to express their feelings and evaluate usefulnessof equipment

• Risk and change management principles

Capability Build a partnership between the team, individual, and carer


• Information that should be available in the supported self-management plan, what it means, and what to do ifit is not there

• Recording of agreements, plan of care and other communications to be accessed by all members of the multi-agency team

• Knowledge of condition specific factors that might impact the plan, appropriate to worker’s practice and level

Appendix 3:


Capability Assess, plan and implement specific parts of an individuals self-management plan


• What is meant by ‘individual consent’, the purpose of confirming, if possible and appropriate, that theindividual has consented to the intervention on each specific occasion of contact

• The situations when an individual may not be able to give their consent and what to do in response to these

• The legal, professional and organisational frameworks and policies related to statutory powers to intervenewithout an individual’s or their representative’s consent

• Why it is important that the individual and family members/carers understand the purpose and form of theinterventions and have the opportunity to ask questions

• The equipment and materials which are needed for the different aspects of the supported self-managementplan for which you are responsible

• The purpose of constructive feedback and how this differs from positive feedback

• The factors that affect the achievement of agreed goals and how each of these can be identified

• Your role and responsibilities for recording activities and outcomes

Capability Empower families, carers, and others to support individuals


• The types of information to obtain from families, carers and others

• Aspects of carers and families relationships with individuals that may help or hinder the achievement ofself-management

Appendix 4:

Literature, Policy, Standards and 46

Anderson, L (2005) Self-help books for depression:how can practitioners and patients make the rightchoice? British Journal of General Practice.55 (514) 387-392

Audit Scotland (2007) Key Messages: ManagingLong-term Conditions. Auditor General for Scotland& the Accounts Commission. Edinburgh

Astin, J., A. (2002) Psychological interventionsfor rheumatoid arthritis: a meta-analysis ofrandomised controlled trials.Arthritis Rheumatology. 47 (3) 291-302

Barlow, J (2002) Self-management approachesfor people with chronic conditions; a reviewPatient Education Counselling. 48 (2) 177-187

Bodenheimer T (2002) Patient self-managementof chronic disease in primary care.JAMA. 288 (19) 2469-2475

Boulware, L, E (2001) An evidence-based reviewof patient-centred behavioural interventions forhypertension. American Journal of PreventiveMedicine. 21 (3) 221-232

Bower, P. (2001) The clinical and cost effectivenessof self-help treatments for anxiety and depressivedisorders in primary care: a systematic review.British Journal of General Practice.51 (471) 838-845

Bradley, C, & Blenkinsopp, A (1996) Over thecounter drugs. The future of self medication.British Journal of Medicine. 312 (7034) 835-837

Campbel H, S. (2004) Cancer peer supportprograms- do they work? Patient Education &Counselling. 55 3-15

Cappuccio, F, P. (2004) Blood pressure control byhome monitoring: meta-analysis of randomisedtrials. British Journal of Medicine. 329 (7458) 145

Chien, W., T. (2004) A randomised controlled trialof a mutual support group for family caregivers ofpatients with schizophrenia. International Journalof Nursing Studies. 41 (6) 637-649

Cooper, H, (2001) Chronic disease patienteducation: lessons from meta-analysis.Patient Education Counselling. 44 (2) 107-117

Corbon, S, & Rosen, R (2005) Self-managementfor Long-term Conditions. Kings Fund. London

Cornbleet, M., A. (2002) Patient held records incancer and palliative care: a randomised,prospective trial. Palliative Medicine.16 (3) 205-212

Coser, S (2000) Monitoring blood glucose controlin diabetes mellitus: a systematic review.Health Technology Assessment. 4 (12)

Coulter, A (1999) Paternalism or Partnership?BMJ. 319 (7212) 719-720.

Competencies/Capabilities 47

Dean, K (1986) Self-care behaviour: Implications foraging. In Dean, K et al. (eds) Self-care and Health inOld Age. Health behaviour implications for policyand practice. Croon Helm. London.

Dean, K, & Kickbush, I (1995) Health relatedbehaviour in health promotion: Utilising theconcept of self care. Health Promotion International.10 (1) 35-40

Department of Health (2001) The Expert Patient:a new approach to chronic disease management forthe 21st century. Department of Health. London

Department of Health (2004) The NHSImprovement Plan: Putting People at the Heart ofPublic Service. Department of Health. London

Department of Health (2004a) Improving ChronicDisease Management. Department of Health.London

Department of Health (2004b) The NHSKnowledge and Skills Framework (NHS KSF) andthe Development Review Process. Departmentof Health. London

Department of Health (2005a) Public attitudes toself care: Baseline Survey. Department of Health.London

Department of Health (2005b) Self Care – A RealChoice. Department of Health. London

Department of Health (2006a) Our Health, ourcare, our say: a new direction for communityservices. Department of Health. London

Department of Health (2006b) Supporting peoplewith Long-term Conditions to Self Care – Guidance.Department of Health. London

Ellins, J, & Coulter, A. (2005) How engaged arepeople in their healthcare? Findings of a nationalsurvey. Pickler Institute. Oxford

Ellis, S, et al. (2004) Diabetes patient education: ameta-analysis and meta-regression. PatientEducation and Counselling. 52 (1) 97-105

Evertt, B. (2006) Transforming Care Programme.Supporting Self-management for People with Long-term Conditions. The Framework. Surrey & SussexPrimary Care Trust Alliance

Farmer, A. et al (2005) A systematic review oftelemedicine interventions to support bloodglucose self-monitoring in diabetes.Diabetic Medicine. 22 (10) 1372-1378

Faulkner, M, Davies, S, Nolan, M, Brown-Wilson, C.(2006) Development of combined assessmentof residential environment (CARE) profiles.55 (6) 664-677

Fraser, S., W. Greenhalgh, T. (2001) Copingwith complexity: education for capability.British Medical Journal. 323 799-803

Appendix 4:


Funnell, M., and R. Anderson (2000) The problemwith compliance in diabetes. JAMA. 284(13) 1709

Gary, T, L. et al (2003) Meta-analysis of randomizededucational and behavioural interventions in type2 diabetes. Diabetes Education. 29 (3) 488-501

Glueckauf, R. & Ketterson, T. (2006) Telehealthinterventions for individuals with chronic illness:research review and implications for practice.Professional Psychology, Research & Practice.35 (6) 615-627

Hampson, S, E, et al (2001) Effects of educationaland psychosocial interventions for adolescentswith diabetes mellitus: a systematic review.Health Technology Assessment. 5 (10) 1-79

Health Which? and National Programmefor Information Technology (2003)The Pubic view on electronic health records.http://www.dh.gov.uk/assetRoot/04/05/50/46/04055046.pdf

Hughes, L. (2003) Closing the Gap. A CapabilityFramework for working effectively with peoplewith combined mental health and substance useproblems. (Dual Diagnosis).

Jones, A. et al. (2000) Qualitative study of views ofheath professionals and patients on guided self-management plans for asthma. British MedicalJournal. 321 1507-1510

Kaltenthaler, E. et al (2002) A systematic reviewand economic evaluation of computerised cognitivebehaviour therapy for depression and anxiety.Health Technology Assessment. 6 (22) 1-88

Liddell, C et al (2004) Giving patients an audiotapeof their GP consultation: a randomised controlledtrial. British Journal of General Practice.54 (506) 667-672

Lindahl, E, Norberg, A, Soderberg, A. (2007)The meaning of caring for people with malodorousexuding ulcers. Journal of Advanced Practice.62 (2) 63-17

Lorig, K, R. et al (2004) Long-term randomisedcontrolled trials of tailored-print and small –group arthritis self-management interventions.Medical Care. 42 (4) 346-354

Loirg, K, R. et al (2001) Effect of a self-managementprogram on patients with chronic disease.Effective Clinical Practice. 4 256-262

Long-term Conditions Alliance Scotland (2007)Living Well with Long-Term Conditions. LTCAS.Edinburgh


Long-term Conditions Alliance Scotland andthe Scottish Government (2008) ‘Gaun Yersel’The Self-management Strategy for Long-termConditions in Scotland. Edinburgh

Matiaix, D, & Marks, I (2006) Self-help withminimal therapist contact for obsessive-compulsivedisorder. A review. European Psychiatry. 21 (2) 75-80

McManus, R, J, et al (2006) Targets and selfmonitoring in hypertension: a randomisedcontrolled trial and cost effectiveness analysis.British Medical Journal. 331 (7515) 493

McDonald, W, Rodgers, A, Blakeman, T, Bower, P(2008) Practice nurses and the facilitation of self-management in primary care. Journal of AdvancedNursing. 62 (2) 191-199

Morrison, A. (2001) Effectiveness of printed patienteducational materials in chronic illness: asystematic review o controlled trials. Journal ofManaged Pharmaceutical Care. 1 (1) 51-62

Murray, E. et al (2004) Training for patients in arandomised controlled trial of self-managementof warfarin treatment. British Medical Journal.328 (7437) 437-438

Murray, S, Kemdall, M, Boyd, K and Sheikh, A.(2005) Illness trajectories and palliative care,British Medical Journal. (330) 1007 -1011

Newman, S. et al (2001) what is meant by self-management and how can its efficacy beestablished? Rheumatology. (Oxford) 40 (1) 1-4

NHS Education for Scotland (2003) ContinuingProfessional Development Portfolio: A Route toEnhanced Competence in Caring for Older People.NHS Education for Scotland. Edinburgh

NHS Education for Scotland (2005a) Stroke: CoreCompetencies for Healthcare Staff. NES Edinburgh

NHS Education for Scotland (2005b) CoronaryHeart Disease: Core Competencies for Health CareStaff. NES. Edinburgh

NHS Education for Scotland (2005c) The RightPreparation. The Framework for Learning DisabilityNurse Education in Scotland. NES. Edinburgh

NHS Education for Scotland (2006a) A Frameworkfor competency development in Ambulatory Care.NES Edinburgh

NHS Education for Scotland (2006b) Working withindividuals with cancer, their families and carers.Professional Development Framework for Nurses andAllied Health Professionals Core Level. NES.Edinburgh

NHS Education for Scotland (2007a) Visible,Accessible and Integrated Care: CapabilityFramework for Nurses and Midwifes. CoreCurriculum Framework. NES. Edinburgh

Appendix 4:


NHS Education for Scotland (2007b) A guide tousing Palliative Care Competence Frameworks.NES. Edinburgh

NHS Education for Scotland (2008) Working withOlder People in Scotland: A Framework for MentalHealth Nurses. NES Edinburgh

NHS Health Scotland (2007) Active for Later Life :Promoting Physical Activity with Older People.Health Scotland. Edinburgh

NHS Quality Improvement Scotland (2005)The Impact of Nursing on Patient Clinical Outcomes.Developing Quality Indicators to Improve Care.NES QIS Edinburgh

NICE (2003) Guidance on the use of patient-education models for diabetes. Technology AppraisalGuidance 60. National Institute for ClinicalExcellence. London.

Nolan, N, Brown, J, Davies, S, Nolan, J, Keady, J(2006) The Senses Framework: Improving Care forOlder People Through a Relationship-CentredApproach. Getting Research into Practice. (GRiP)Report No 2. The University of Sheffield. Sheffield.

Norris, S, L. et al (2001) Effectiveness of self-management training in type 2 diabetes: asystematic review of randomized controlled trials.Diabetes Care. 24 (3) 561-587

Norris, S, L et al (2002) Self-management educationfor adults with type 2 diabetes: a meta-analysis ofthe effect on glycemic control. Diabetes Care.25 (7) 1159-1171

Rehse, B, & Pukrop, R. (2003) Effects of psychosocialinterventions of quality of life in adult cancerpatients: meta analysis of 37 published controlledoutcome studies. Patient Education & Counselling.50 (2) 179-186

Ritchie, J et al (2000) Parents perceptions of theimpact of a telephone support group intervention.Journal of Family Nursing. 6 (1) 25-45

Royal College of Nursing (2007) Maximisingindependence: the role of the nurse in supportingthe rehabilitation of older people. RCN. London.

Sainsbury Centre for Mental Health (2001)The Capable Practitioner. SCMH. London.

Sainsbury Centre for Mental Health (2004)Ten Essential Shared Capabilities. A Framework forthe Whole Mental Health Workforce. SCMH. London.

Scottish Executive Health Departmennt (2007)Living Well with Long-term Conditions: Report of theOpen Space Events held in Glasgow. SE: Edinburgh


Scottish Executive Health Department (2005a)National Framework for Service Change in the NHSin Scotland: Building A Health Service Fit For TheFuture. SEHD Edinburgh

Scottish Executive Health Department (2005b)Delivering for Health. SEHD. Edinburgh

Scottish Executive Health Department (2005c)Better Outcomes for Older People. SEHD. Edinburgh

Scottish Executive Health Department (2006a)Delivering Care, Enabling Health. SEHD. Edinburgh

Scottish Executive Health Department (2006b)Rights, Relationships and Recovery: The Report ofthe National Review of Mental Health Nursing inScotland. SEHD. Edinburgh

Scottish Executive Health Department (2006c)Developing Community Hospitals: A Strategy forScotland. SEHD. Edinburgh

Scottish Executive Health Department (2006d)Visible, Accessible and Integrated Care. Report ofthe review of nursing in the community in Scotland.SEHD Edinburgh

Scottish Executive Health Department (2006e)The Future of Unpaid Care in Scotland: HeadlineReport and Recommendations. SEHD. Edinburgh

Scottish Executive Health Department (2006f)Modernising Nursing Careers – Setting the Direction.SEHD. Edinburgh

Scottish Executive Health Department (2006g)Careers Framework for NHS Scotland. SEHD.Edinburgh

Scottish Executive Health Department (2006h)Advanced Nursing Practice Framework- Cancer Nurse Specialist Example. SEHD. Edinburgh

Scottish Executive Health Department (2007H)Community Health Partnerships (CHP) Long-termConditions Toolkit. HDL (2007) 10 SEHD. Edinburgh

Scottish Government (2008) Better Cancer Care:an action plan. SG: Edinburgh

Scottish Government (2007a) Better Health,Better Care; Planning Tomorrows Workforce Today.SG. Edinburgh

Scottish Government (2008) Better Health, BetterCare: Action Plan: What It Means For You. SG.Edinburgh

Scottish Government (2008) Directing Your OwnSupport: A User’s Guide to Self-Directed Support inScotland. SG. Edinburgh

Scottish Government (2008) It’s okay to ask:Getting the most out of your health careappointments. SG. Edinburgh

Scottish Government (2008) Living and Dying Well:a national action plan for palliative and end of lifecare. SG: Edinburgh

Scottish Partnership for Palliative Care (2006)Joined Up Thinking, Joined Up Care: Increasing accessto palliative are for people with life-threateningconditions other than cancer. SPPC: Edinburgh.

Scottish Partnership for Palliative Care (2007)A Guide to using competence frameworks.SPPC; Edinburgh

Scottish Partnership for Palliative Care (2008)Living and Dying with advanced Heart failure: apalliative care approach. SPPC: Edinburgh.

Schwartz, C, E. (1999) Teaching coping skillsenhances quality of life more than peer support:results of a randomized trial with multiple sclerosispatients. Health Psychology. 18 (3) 211-220

Steed, L, et al (2003) A systematic review ofpsychosocial outcomes following education, self-management and psychological interventions indiabetes mellitus. Patient education & counselling.51 (1) 5-15

Skills for Health (2005) Case ManagementCompetencies Framework for the care of peoplewith Long-term Conditions. SFH. Leeds

Van Boeijen, C, A. et al. (2005) Efficacy of self-helpmanuals for anxiety disorders in primary care: asystematic review. Family Practice. 22 (2) 192-196

Warner, J, P. et al (2000) Patient-held shared carerecords for individuals with mental illness.Randomised controlled evaluation. British Journal ofPsychiatry. 177 319-324

Warsi, A. et al. (2003) Arthritis self- managementeducation programs: a meta-analysis of the effecton pain and disability. Arthritis and Rheumatism.48 (8) 2207-2213

Williams, J, G. et al (2001) Pragmatic randomisedtrial to evaluate the use of patient held records orthe continuing care of patients with caner. QualityHealth Care. 10 (3) 159-165

Appendix 4:


53Competencies/Capabilities

Notes54

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ch 2

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This guide was developed by the South East Long - Term Conditions Partnership Project

Cheryl Harvey Project ManagerT 07776473076E [email protected]

Maureen PolsonProject FacilitatorT 07825119366E [email protected]

Dr Fiona GaileyNHS Education for ScotlandT 0131 650 2609

Audrey TaylorNHS Education for ScotlandT 0131 313 8000

If further information is required on any aspect of this guidance,including requesting further copies please contact :

SupportingPeoplewithLong-Term … 2 08 Background TheContext Around two million people in Scotland...

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