Common core competences and principlesfor health and social care workers

working with adults at the end of life

To support the National End of Life Care Strategy

Foreword 2

End of Life core competences and principles - overview 4

End of Life core competences and principles - application 5

Introduction 6

What is the purpose of this document? 7

Using this document 8

The competences 10

The principles 13

Appendix one: Glossary 17

Appendix two: Case studies from trial implementations of the end of life care core competences and principles 20

Appendix three: EoLC competences and core principles project - next steps 28

Appendix four: Useful resources 30

C o n t e n t s

The End of Life Care Strategy was published in July 2008.

It recognised that the delivery of quality end of life care services to individuals, theirfamilies and carers will require nothing less than a cultural shift in attitude andbehaviour within the health and social care workforce.

The Department of Health, working with the NHS End of Life Care Programme,has commissioned three foundation projects based on the core commonrequirements for workforce outlined in the strategy to start taking this workforward:

• Developing competences and core principles

• Producing a suite of e-learning modules

• Identifying related communication skills training at all levels

This document reflects the work undertaken to date on developing workforcecompetences and core principles as they relate to end of life care. Skills for Careand Skills for Health working in partnership with the Department of Health andthe NHS End of Life Care Programme have spent the past year on developmentand consultation with a wide range of expert groups and organisations. Werecognise that the work has been challenging, as the outcomes must meet thediffering needs of health care and social care and use a terminology that both canrelate to. We believe that this work goes a long way to meeting those challengesand should be seen as a milestone in development and not a finished product.Thanks are extended to the people who participated in the development of thisdocument - field test sites, stakeholder group members, the Department ofHealth, Skills for Care, Skills for Health, the National End of Life Care team andeveryone who contributed actively to the consultation document.

Over the next 12 months work will continue to apply these competences and coreprinciples to practical applications. The work will also include raising awarenessand helping commissioners and providers of services to identify and address thenecessary knowledge, skills and attitudes needed to support quality services aswell as helping individual workers identify their own development needs.

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F o re w o rd

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Development of the workforce will take time but must not be taken as an excusefor inaction. Some employers and workers may not make an immediate connectionto this area of work - but there are very few working across health and social care,and other sectors such as police and housing services, who will not at some timeinteract with the stages of the end of life care pathway.

We would therefore urge those of you who are reading this to become our‘champions’ disseminating this document amongst your networks and contactsand encouraging them to work with us during the next stage. Working togetherwe will be able to translate this work into some early benefits for individuals andtheir carers as well as being rewarding for those providing the services.

Andrea Rowe Chief Executive Skills for Care

John Rogers Chief Executive Skills for Health

Professor Mike RichardsNational Clinical DirectorEnd of Life Care

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End of Life core competences and principles - overview

These common core competences underpin all levels of practice and are defined by:

• Linkages to levels defined by nationally recognised frameworks - e.g. National Occupational Standards (NOS), Knowledge and Skills Framework (KSF), National WorkforceCompetences (NWC), Qualifications and Credit Framework (QCF), continual professional development (CPD)

• Basic, Intermediate and Specialist Groupings – to enable further flexibility for local developments

Values & Knowledge developments

Communication Skills

Advance CarePlanning

Symptom management,comfort and well being

Assessment and Care Planning

These seven principles underpin all workforce and service development, activity and delivery irrespective of level and organisation. They are:

1. Choices and priorities of the individual are at the centre of planning and delivery2. Effective, straightforward, sensitive and open communication between individuals,

families, friends and workers underpins all planning and activity. Communication reflects an understanding of the significance of each individual’s beliefs and needs

3. Delivery through close multidisciplinary and interagency working4. Individuals, families and friends are well informed about the range of options and

resources available to them to be involved with care planning5. Care is delivered in a sensitive, person-centred way, taking account of circumstances,

wishes and priorities of the individual, family and friends6. Care and support are available to anyone affected by the end of life and death of an

individual7. Workers are supported to develop knowledge, skills and attitudes. Workers take

responsibility for, and recognise the importance of, their continuing professional development

COMPETENCES WELL TRAINEDWORKFORCE

HIGH QUALITYEoLC SERVICES

PRINCIPLESWELL DESIGNED

SERVICES

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End of Life core competences and principles - application

tailored to meet the needs of people at the endof their lives.

All care and support should centre around theneeds, wishes and priorities of the individualreceiving the service. As people approach theend of their lives these may change, or take ona different perspective. When this occursworkers need to be able to adapt their currentpractice to take account of this. Patterns of careshould alter to accommodate a shift from cure,increasing independence and future planning tomanaging symptoms and concerns and ensuringthat the individual and their family and friendsare able to spend time in a way that ismeaningful to them, and is as positive aspossible.

For workers this may include developing somenew knowledge, as well as refocusing theirpractice. It will also include developing flexible,co-ordinated, multi-disciplinary and multi-agencyapproaches in which care plans are regularlyreviewed and amended to meet the individual’swishes.

The main purpose in developing competencesand principles is to support workforcedevelopment, in its broadest sense, to ensure allworkers are confident and able to work withpeople at the end of their lives. They reflect theprinciples, priorities and actions laid out in theEnd of Life Care Strategy published by theDepartment of Health in July 2008 and havebeen produced and refined followingconsultation and testing across a range of healthand social care sites in England.

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Traditionally, End of life care (EoLC) has beenviewed as a specialist area of work, beyond thescope of most workers. For a relatively smallnumber of workers that is indeed the case.However, EoLC is in reality far more thanspecialist care. It incorporates all elements of thedaily lives of those people nearing the end oftheir lives - whether from disease progression orold age and that means a far wider group ofworkers is involved.

During the course of a working life many peoplewill at some time find themselves supporting anindividual who is in the final stages of their life.Even though this is not a key part of their day today role, it is important that they are preparedand able to make a positive contribution when itis needed. This document is aimed at this broadgroup of workers, providing a framework to linkthis more specialist activity to the competences,expectations and outcomes more usuallyassociated with their role. It will be applicable toworkers from many disciplines1 as they findthemselves involved in supporting peopleapproaching, or at, the end of their lives.

The principles and competences outlined in thisdocument form a common foundation for allworkers whose work includes care and supportfor people approaching, and at, the end of theirlives, whether their primary involvement ishealthcare related or social care and support.They do not replace those occupation - orservice - specific standards and competencesalready in place; they are designed to be usedalongside these, ensuring that all services are

I n t ro d u c t i o n

1 The majority of these workers will come from health or social care settings, but many other people may be included, forexample community workers, faith leaders, or people working in housing or education.

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needs of workers who look after people who are approaching the end of their lives. It will also be a useful reference document to support workforce planning.

• Education and training providers should also use the document as a checklist for curriculum design and delivery, to ensure thatthe workforce has the required competences and attitudes to work effectively in this area, and that these are linked to wider nationally recognised standards and frameworks.

• Supervisors can use it to inform supervision, particularly for identifying learning and development needs of their staff.

• Workers may also use it individually to support their continuing personal/professionaldevelopment, and to refer to when working with someone who is nearing the end of theirlife. This will help to improve thereawareness, confidence and skills in caring for someone at the end of life.

• Commissioners may use this as an indicator or measure that the services or organisations they contract with have the necessary knowledge and skills to deliver end of life care.

For people working as specialist palliative carepractitioners there will be higher levelexpectations around both performance andknowledge, but these core competences andprinciples will still be meaningful to them, and agood understanding of them will be helpfulwhen working with other organisations and/orother disciplines.

The primary purpose of this document is tosupport workforce development, training andeducation, and to support the development ofnew and enhanced posts and roles.Responsibility for the creation of a well-developed workforce rests with everyone, notjust HR or training specialists. It should be usedby everyone engaged in developing,commissioning, supporting or delivering End oflife care (EoLC). It is not intended for any singleoccupational group; one of its aims is toencourage effective multi-disciplinary and multi-agency work across boundaries, and it has beendesigned to make sense to workers whatevertheir occupational background or specialist area.It can be used by workers at any level, and withvarying degrees of contact with people at theend of their lives. In many cases it will apply tothose working with people with a terminalillness, but it is equally important to use it whenworking with very elderly people as they reachthe final stages of their lives.

It can be used as a tool for a number ofpurposes (details of real examples can be foundin appendix two):

• Service managers may find it a helpful tool when they are considering developing servicesand practice, as a way to ensure that workforce planning and development is integral to their activities. It will be helpful in creating job descriptions and in defining new roles. It may also be a useful tool when redesigning services to provide a multi-disciplinary approach to care delivery.

• Workforce leads can use it to ensure that the opportunities they are providing meet the

What is the purpose of this document?

in this context. The range of areas in whichworkers need to be competent, and the level ofskill they need to demonstrate, depends upontheir degree of involvement in EoLC services andthe level at which they would normally beexpected to perform.

The End of Life Care Strategy divides theworkforce into three broad groups to enableworkforce development to be focused where itwas perceived that the greatest need fordevelopment lay. Group B, which includesworkers likely to be involved at the start of anindividual’s EoLC pathway was identified as theone that probably needed to be prioritised.However this should be determined by localservice delivery needs. The competences andprinciples described in this document can beapplied to workers within any of the threegroups.

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Among the stumbling blocks to real multi-disciplinary and multi-agency working are thediscrepancies in the language used by differentgroups of workers. This difficulty is compoundedby the use of specialist terms. These are veryimportant within a profession, but can be abarrier to understanding when working withdifferent groups of people (including theindividual receiving the service). In thisdocument words that will make sense toeveryone are used where possible. A glossaryhas been provided to give a fuller explanation ofsome of the more specialist terms, and tooutline the range of profession-specific wordsthat have been grouped together.

This document supports workforcedevelopment, recognising that without this it isimpossible to create excellence in servicedelivery. Everyone involved in providing End oflife care (EoLC) needs to be competent to work

Using this document

GROUP DEFINITION

GROUP A: specialist palliative care staff, workentirely focused on people at the end of theirlives.

GROUP B: staff who frequently deal with endof life care as part of their role.

GROUP C: staff working within other serviceswho are involved with end of life careinfrequently.

MINIMUM SKILL AND KNOWLEDGE LEVEL

Highest levels, through specialist training. Toinclude all of common core competences.

Need to be enabled to develop or applyexisting skills and knowledge to the principlesand competences. May require additionalspecialist training.

Good basic grounding in the principles andcompetences; alongside knowledge of whereto seek expert advice or refer on to.

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The following pages set out the ‘dimensions’ ofeach of the core competences (which will befurther defined by levels as part of the nextstage implementation plan) and theunderpinning core principles. Summary casestudies from the pilot sites illustrate how thesehave been put into practice and lessons learnt,and can be found in appendix two. Moredetailed case studies can be found on thewebsite.

An outline implementation plan to cover thenext steps is contained in appendix 3.

This document lays out a common foundationfor all workers. It is one of several documents2

that support workforce development. Theseother tools and guidance, including moredetailed statements of competence, and links toother occupational standards and frameworks,can be accessed viawww.endoflifecareforadults.nhs.uk. Other usefulcontacts are listed in appendix 4 of thisdocument.

Those using these competences and principlesshould do so within the context of their ownoccupational standards and requirements, forexample those working in the health sector willwish to make links to the Knowledge and SkillsFramework and other national workforcecompetences developed by Skills for Health. Forthose working in social care they will want torefer to national occupational standards and theQualifications and Credit Framework.

This work supports the ongoing development ofEoLC services. It will need to continue to evolveover time, to be responsive to workforce needs,to share good practice as this develops, and tobe shaped by the people who use it. Already anumber of organisations are developing theirown tools and guidance, using the nationalguidance in conjunction with local requirements.To facilitate sharing good practice and localdevelopments a national database of usefulinformation will be created, accessible toeveryone viawww.endoflifecareforadults.nhs.uk.

2 Documents developed by a number of organisations.

Using this document - continued

will continue, and as progress is made furtherguidance and tools will be added.4

The main dimensions for each of thecompetence areas are as follows:

1. Communication Skills

a. In relation to EoLC, communicate with a range of people on a range of matters in a form that is appropriate to them and the situation.

b. Develop and maintain communication with people about difficult and complex matters orsituations related to EoLC.

c. Present information in a range of formats, including written and verbal, as appropriate to the circumstances.

d. Listen to individuals, their families and friendsabout their concerns related to the end of lifeand provide information and support.

e. Work with individuals, their families and friends in a sensitive and flexible manner,demonstrating awareness of the impact of death, dying and bereavement, and recognising that their priorities and ability to communicate may vary over time.

2. Assessment and Care Planning

a. Understand the range of assessment tools, and ways of gathering information, and their advantages and disadvantages.

b. Assess pain and other symptoms using assessment tools, pain history, appropriate physical examination and relevant investigation.

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Occupation- and profession-specificcompetences, which may also cover relevantoverarching values and knowledge, exist forworkers across health, social care and othersectors. However these will need to be builtupon for times when they are working withpeople approaching, or at the end of their lives.

Expectations around the four key areas will varyaccording to circumstances. They should beinterpreted and applied to the particular roleand circumstances of the worker, or workers.They should link appropriately to the levelrequired by service standards and the level theworker would normally be expected to performat when providing the service, in conjunctionwith the degree of involvement in theindividual’s End of life care (EoLC). Overarchingvalues and knowledge competences as theyrelate to EoLC should also be understood anddemonstrated by all workers.

The competences may be used as a freestandingframework, but are also designed to bereferenced to other occupational standards andframeworks, such as the Knowledge and SkillsFramework, National Occupational Standards forHeath and Social Care, National WorkforceCompetences (Skills for Health) and theQualifications and Credit Framework (QCF3)which will replace NVQs. Further work isplanned to group the competences as basic,intermediate and specialist to allow localflexibility. Some work has already begun inmaking these links, and can be accessed viawww.endoflifecareforadults.nhs.uk. This work

The competences

3 For further information see www.qca.org.uk/qcf 4 See Implementation Plan appendix 3

The competences - continued

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psychological interventions, complementary therapies, surgery, community or practical support.

e. In partnership with others, including the individual, their family and friends, develop anEoLC plan which balances disease-specific treatment with other interventions and support that meet the needs of the individual.

f. In partnership with others, implement, monitor and review the EoLC plan.

g. Awareness of cultural issues that may impact on symptom management.

4. Advance Care Planning

a. Demonstrate awareness and understanding ofAdvance Care Planning, and the times at which it would be appropriate.

b. Demonstrate awareness and understanding ofthe legal status and implications of the Advance Care Planning process in accordancewith the provisions of the Mental Capacity Act 2005.

c. Show understanding of Informed Consent, and demonstrate the ability to give sufficient information in an appropriate manner.

d. Use effective communication skills when having Advance Care Planning discussions as part of ongoing assessment and intervention.

e. Work sensitively with families and friends to support them as the individual decides upon their preferences and wishes during the Advance Care Planning process.

f. Where appropriate, ensure that the wishes of the individual, as described in an Advance Care Planning statement, are shared (with permission) with other workers.

c. Undertake/contribute to multi-disciplinary assessment and information sharing.

d. Ensure that all assessments are holistic, including:

• Background information• Current physical health and prognosis• Social/occupational well-being• Psychological and emotional well-being• Religion and/or spiritual well-being, where

appropriate• Culture and lifestyle aspirations, goals and

priorities• Risk and risk management• The needs of families and friends, including

carer’s assessments.e. Regularly review assessments to take account

of changing needs, priorities and wishes, and ensure information about changes is properly communicated.

3. Symptom management, maintaining comfort and well being

a. Be aware that symptoms have many causes, including the disease itself, its treatment, a concurrent disorder, including depression or anxiety, or other psychological or practical issues.

b. Understand the significance of the individual’sown perception of their symptoms to any intervention.

c. Understand that the underlying causes of a symptom will have an impact upon how careshould be delivered.

d. Understand the range of therapeutic options available, including drugs, hormone therapy,physical therapies, counselling or other

c. Practice that is sensitive to the support needs of family and friends, including children and young people, both as part of EoLC, and following bereavement.

d. Awareness of the importance of contributing to evaluation and change of services, participating as appropriate, and of involving the people who use them in that process.

e. Taking responsibility for one’s own learning and continuing professional development, and contributing to the learning of others.

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g. When appropriate, know what the Advance Care Planning statement contains, and how this will impact upon an individual’s caredelivery.

5. Overarching values and knowledge

a. In the context of EoLC, understanding and knowledge of:

• One’s own professional/role boundaries• Legal and ethical issues - adherence to

legislation and advisory guidance around e.g. Mental Capacity Act and the Mental Health Act

• Professional codes of practice or conduct, andtheir impact on practice

• The role/contribution of other workers and organisations to ensure leadership commitment and innovation

• The impact of one’s own beliefs on practice• Approaches to risk assessment, management

and taking• Approaches to and theories of change, loss

and bereavement • Social models of care, and person-centred

approaches.b. Person-centred practice that recognises the

circumstances, concerns, goal, beliefs and cultures of the individual, their family and friends, and acknowledges the significance ofspiritual, emotional and religious support and the diversities in these regards that theremight be between family or social group members.

The competences - continued

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activity. Communication reflects an understanding of the significance of each individual’s beliefs and needs.

Good communication and relationship skills areused to ensure that End of life care (EoLC) plansare clearly understood and shared by everyoneinvolved in their planning and delivery.

Communication and relationship skills are usedto encourage and support individuals to workwith professionals and those providing theirsupport to articulate their needs and wishes fortheir EoLC. This includes identifying strengths,abilities, concerns and priorities. Communicationis used to work towards developing plans and,where possible, achieving solutions in a sensitiveand appropriate manner.

Workers recognise the changing ability anddesire of the individual, their family and friendsto communicate, and adapt their owncommunication style accordingly. This includesrecognising the impact of impairments, and ofanxiety and loss upon the person. Wherechildren and young people are among the familyand friends, workers are aware of thesignificance of child development tocommunication and to ways of coping with lossand bereavement.

Effective communication recognises and takesaccount of the impact of culture, faith and lifechoices upon what constitutes appropriatecommunication. It is:

Non-judgmental Empathic Genuine Collaborative Supportive

These principles underpin the competences andall workforce development, irrespective of aworker’s level of practice, occupational group orwork setting.

1 The choices and priorities of the individual are at the centre of all End oflife care planning and delivery.

The individual is at the centre of all assessment,care planning and delivery; their wishes, beliefsand priorities are paramount in all decisionmaking. Practice is based upon a person-centred, social model of health and disability,and is informed by the principles of respect,dignity, choice and independence. These valuesmean a shift from professionals knowing best toworkers supporting and empowering people tobe in control of their needs and wishes,including the right to change their mind aboutwhat they want.

The significance of cultural diversity, includingthe impact of faith, beliefs, religion and lifestyle,acknowledging the individual’s right to maketheir own decisions, is recognised. People areencouraged and supported to make decisionsbased on their experience of their needs, andenhanced by appropriate professional supportand guidance. People are supported inidentifying and managing risk proportionatelyand realistically, and have an understanding ofthe notion of Informed Consent, best interestand Advance Decision to Refuse Treatment.

2 Effective, straightforward, sensitive andopen communication between individuals, families, friends and workers underpins all planning and

The principles

4 Individuals, their families and friends arewell informed about the range of options and resources available to themto enable them to be involved in the planning, developing and evaluating of End of life care plans and services.

Individuals, their families and friends aresupported in their involvement in thedevelopment and delivery of care to supporttheir chosen EoLC pathway, and in developing,where appropriate, Advance Care Plans. Workershave awareness and understanding of thesignificance of legal frameworks around EoLCand advance care planning, and are able toshare this information as appropriate to theirrole.

Workers promote and encourage theinvolvement of individuals, their families andfriends in the planning, development andevaluation of services they receive, asappropriate to their circumstances, recognisingthe different ways that people, includingchildren, will choose to be involved.

Evidence-based information is provided in anappropriate manner and format, to ensuresufficient knowledge or information is availablefor the individual, their families and friends tomake well-informed choices. Individuals have agood understanding of the benefits and risks oftheir chosen pathway.

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And is based on: Active listening Reflection Legitimisation of people’s views, valuing the knowledge and experience of their needsPartnership Respect.

3 High quality End of life care is delivered through close multi-disciplinary and inter-agency working. Through partnership working the needs of the individual are articulated, shared, understood and reviewed. By developing and utilising networks the right resources and support areidentified and utilised.

Workers have a good understanding of, andrespect for, the services provided by theircolleagues in other disciplines, and work inpartnership with them to meet the needs of theindividual, their family and friends.

Care and support is delivered in a co-ordinatedway, information is shared in a timely andappropriate manner, recognising the range ofcommunication needs and requirements ofindividuals, their families and friends, includingchildren and young people.

Networks and partnerships are used to identifyresources, information, and support systems thatwill be of benefit to individuals, their familiesand friends.

The principles - continued

The principles - continued

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from person to person, and may differ betweenthe individual and their family or friends.

6 Care and support are available to, and continue for, anyone affected by the end of life, and death, of the individual.

Workers are aware of the impact the individual’sdeath and dying will have on those closest tothem, and are able to offer appropriate advice,information and support. The worker is able tomake referrals to other networks ororganisations to ensure that those affectedreceive the information, care and support theyneed, when they need it, including after thedeath of the individual.

Workers recognise the support needs of thosewho have chosen to take on a caring role, andtake steps to ensure these are met, includingundertaking carer’s assessments (see glossary,appendix 1).

The worker recognises that the responses ofchildren and young people affected by the deathof someone close to them may be different fromadults, and finds ways to ensure that their needsare met.

Workers are able to give support to, and receivesupport from, colleagues, and are able to makelinks to more structured support where needed.

Employers recognise the potential emotionalimpact of dying and death upon workers, andhave appropriate systems and resources in placeto provide support.

5 Care is delivered in a sensitive, person-centred way that takes account of the circumstances, wishes and priorities of the individual, their family and friends.

Care is organised around the needs andcircumstances of the individual, and is deliveredin a co-ordinated manner across services. It isdelivered in a way that demonstrates respect forthe individual, their family and friends,maintaining their dignity at all times. Workersare sensitive to circumstances, and theirchanging nature, and care is deliveredaccordingly.

Workers support families and friends to take oncaring responsibilities where that is desired, butrecognise and accept that they may choose notto undertake this role.

Where conflict arises between the individual,their family and friends about the chosen EoLCpathway, or Advance Care Plan, the worker isable to work sensitively, and as appropriate totheir role, with all parties, to work towards aresolution. This may involve contactingmediation or advocacy services in highly complexsituations.

The concerns, fear and anxieties of individuals,their families and friends are recognised andresponded to. The worker is aware of the impactthat age, culture, religion, ability and otherfactors may have on an individual’s response togrief, loss and bereavement, and recognises thatthe importance of spiritual support will vary

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7 Workers are supported to develop knowledge, skills and attitudes that enable them to initiate and deliver high quality End of life care or, whereappropriate, to seek advice and guidance from other colleagues. Workers recognise the importance of their continuing professional development, and take responsibility for it.

Employers are aware of the ways in which adultslearn, and the cultures in which they learn best,and ensure that workers are supported in theirdevelopment. They recognise the link between awell-trained workforce, an open approach toorganisational learning, and excellence in servicedelivery.

Workers recognise that effective work withpeople depends upon well-developedknowledge and skills and appropriate attitudes.Good use is made of supervision and otherlearning and development opportunities toreflect on practice, and identify learning needs.They recognise the limitations of their ownpractice, seeking support when appropriate.

Workers recognise the importance of allmembers of the workforce providing help,support and guidance to each other.

The principles - continued

APPENDIX ONE

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Carer The family or friends who take on, in anunpaid capacity, some or all of the responsibilityfor the care and support of the individual. (Thisis as distinct from employed care workers,although in some other contexts ‘carer’ mayrefer to workers.)

Carer’s assessment An assessment of theneeds of the carer (see above) to enable them tocare for the individual. Carers are entitled to asksocial services departments for a carer’sassessment.

Care plan, care pathway, management plan,care package, End of life pathway Thedocument that describes the detail of the careand support that the individual will be given, thegoals of the plan, and the ways in which it willbe monitored, reviewed and evaluated. Unlikethe ACP, it is present-oriented rather thanfuture-tense.

Commissioning The mechanism to identify andpurchase high quality safe services and resourcestailored to meet identified needs.Commissioning may take place at theorganisational or individual level, and includesmechanisms to monitor and evaluate theongoing quality and appropriateness of services.Where an appropriate resource does not alreadyexist, commissioning may include working witha provider to set up the service.

Competence A statement describing thebehaviour, underpinning knowledge and valuesexpected of workers to fulfil a specific rolecompetently. Statements of competence areused both in creating job descriptions and aspart of the training and assessment of workers.

Advance care planning The process ofidentifying future individual wishes and carepreferences. This may or may not result in therecording these discussions in the form of anAdvance Care Plan.

Advance Care Plan (ACP), statement ofwishes and preferences An ACP sets out thewishes of the individual about the ways in whichthey will be supported and cared for in thefuture as their illness progresses and theircondition deteriorates. Plans are based upondiscussions between the individual and their careproviders (both health and social care). Itincludes important information about concerns,values and preferences. ACPs should bedocumented, communicated to all thoseinvolved in the care plan, including family andfriends if the individual wishes it. ACP isparticularly important when an individual’scommunication skills are impaired.

Advance decision to refuse treatment Peoplehave the legal right to either consent to orrefuse treatment. The courts have recognisedthat, for adults, decisions can be taken inadvance. This decision must then be upheld if,at a later stage, the person loses the ability tomake such a decision. Decisions can be revokedby the individual at any time.

Care/care and support Terms used to cover allof the interventions that are part of theindividual’s EoLC plan. This includes any of theactivities that are part of this, for example,medical or surgical interventions, personal care,spiritual guidance, counselling, communityinvolvement or specialist housing support.

Glossary

Information should include risks, side effects andany alternative treatments.

Mental Capacity Act The Mental Capacity Act2005 came into force in October 2007 and issupported by the MCA 2005 Code of Practice.The Act provides a statutory framework toempower and protect people who may lack thecapacity to make decisions. It makes it clear whocan make decisions, in which situation and howto go about it.

Palliative Care An approach that improves thequality of life of individuals, their families andfriends, as they face the problems associatedwith life-threatening illness, or very old age. Byearly intervention and high quality assessment,suffering, whether physical, psychosocial orspiritual, is prevented, reduced or relieved. It:• provides relief from pain and other distressing

symptoms • affirms life and regards dying as a normal

process • intends neither to hasten or postpone death • integrates the psychological and spiritual

aspects of patient care• offers a support system to help patients live

as actively as possible until death • offers a support system to help the family

cope during the patients illness and in their own bereavement

• uses a team approach to address the needs ofpatients and their families, including bereavement counselling, if indicated

• will enhance quality of life, and may also positively influence the course of illness

• is applicable early in the course of illness, in

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Culture, cultural background, (chosen)lifestyle Terms used to encompass the range ofways in which people live, including religion,faith (or the absence of these), sexuality, and anyother aspect of a person’s lifestyle that will havean impact on their EoLC planning and decisionmaking, for example language or disability.

End of life care (EoLC) All elements of supportto people approaching the end of their lives. Inaddition to the highly-skilled and focused careand support that may be provided by thoseworking as palliative care specialists, all of theother significant support that is given needs totake on a different focus and perspective toaccommodate this stage of life. It encompassesthe management of all symptoms includingpain, and provides psychological, social, spiritualand practical support.

Family, friends The people, including childrenand young people, who are important to theindividual; they may or may not have an agreedcaring role in the EoLC plan. In this document,families and friends are included at all times, butit is recognised that people will decide forthemselves who they wish to involve.

Individual, people, person, patient, serviceuser, client The person at the centre of the careplan.

Informed Consent Informed consent is apatient’s right to be presented with sufficientinformation to allow the patient to make aninformed decision regarding whether or not toconsent to treatment or a procedure.

The glossary - continued

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work. Skills for Care is concerned with adults’care in England. SSCs work in partnership withemployers at regional and national level.

Skills for Health is the sector skills councilresponsible for ensuring that the healthworkforce is well trained and properlycompetent to undertake its work. SSCs work inpartnership with employers at regional andnational level.

Spirituality is difficult to define, as it can meandifferent things to different people, and itsexistence as a discrete phenomenon may bedenied by some. In essence it is to do withmaking important connections which providepeople with hope, purpose and comfort. Thismay also be confused with religion which relatesto a belief system.

Statement of wishes and preferences/ACP Asummary term that covers recorded (written ororal) information given by an individual abouttheir wishes, preferences or other importantfactors related to their future treatment. Itapplies to both medical and social care.Although not legally binding, it should be usedwhen determining a person’s best interests ifthey lose the capacity to make decisions.

Support network The relationships, practicalresources, emotional or spiritual support, andother activities that the individual identifies asimportant in their EoLC plan. It may includeanyone identified as significant by the individual.

Worker Staff, employees, volunteers orpractitioners who have a formal role or functionin the delivery of EoLC.

conjunction with other therapies that areintended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to betterunderstand and manage distressing clinical complications. (World Health Organisation 2002).

Person-centred approach An approach toworking with people that recognises that theviews and experiences of the person receivingcare are paramount.

Symptom management Any intervention usedto help relieve the individual’s pain, discomfortor other negative experiences that arise as eithera direct or indirect result of their medicalcondition or the ageing process. This mayinclude medication, physical therapy, socialactivities, or spiritual support. It is an integralelement of the care plan, focusing on identifyingand managing the individual’s symptoms. It mayconcentrate on managing pain or other physicalproblems by medical or other intervention, butalso takes account of other symptoms that theindividual identifies as significant to them.Person-centred symptom management assessesand responds to the individual’s needs, takingaccount of the wider context within which theylive, their priorities, and the things that matterto them.

Prognosis The expected progression of adisease and its outcome for the individual.

Skills for Care is part of the Skills for Care andDevelopment sector skills council responsible forensuring that the social care workforce is welltrained and properly competent to undertake its

The glossary - continued

20

APPENDIX TWOCase examples - linking competences and principles to

workforce development in health and social care

As a well-established education and trainingprovider, NHS Bradford and Airedale ClinicalNetwork recognised that it could update itsexisting one and two day courses using the newcompetences and principles as a benchmark.

From September 2009, the revised one and twoday courses for staff from care homes and careagencies will more closely reflect new initiativesin palliative and end of life care. These includeadvance care planning, preferred priorities ofcare and the end of life care pathways.

Catherine Scoggins, Palliative Care and End ofLife Care Education Coordinator at NHSBradford and Airedale, said: “It means we canbe confident that we are delivering exactly theright skills people need to reflect the newNational End of Life Care Strategy. Using aframework based around end of life care givesgreater credibility to the learning syllabus.”

The new focus will add to topics already coveredin the courses including recognising pain, thegrieving process, the principles of palliative care,effective communication, reflective practice andcoping mechanisms.

Ms Scoggins said: “Taking a more plannedapproach to end of life care calls for a greaterunderstanding among the people who providethe ‘hands on care’.”

It is hoped the revamped courses will developthe workforce so that staff are more confident,provide greater choice for patients, reduceemergency admissions to acute care and reducethe number of patients transferred from carehomes to acute trusts in the last weeks of life.

For more information visitwww.bradford.nhs.uk/palliativecare

NHS Bradford and Airedale Clinical Network delivers boosted training for staff

21

“We are now looking at how to developindividual end of life care plans with people sothey can have their wishes met. Havingappropriately trained staff is an important partof this work and the competences help us putthe individual’s needs first. They were veryhelpful in helping us to identify core areas fordevelopment.”

The local palliative care team offered tailor-madehalf-day training sessions in end of life care.

As well as improving care and boosting staffconfidence, the training has strengthenedpartnerships with local training providers andlocal health colleagues who deliver end of lifecare.

For more information visitwww.housing21.co.uk

The housing and care provider for the over-55sdecided to review their end of life care provision,using the core competences as a starting point.

Valarie Anderson, Care Service Manager atHousing 21’s extra care housing scheme inGateshead, Callendar Court, said thecompetences reinforced the organisation’spartnership approach to care delivery. Thescheme managers and staff already work closelywith district nurses and other healthprofessionals to provide tenants in 200 extracare units with care as and when they need it.

The competences allowed Housing 21 a way toreinforce that partnership approach by givingtheir own domiciliary staff and court managerthe skills they need to help tenants stay in theirown home in line with their personal wishes.

Valerie said tenants told Housing 21 theywanted an End of life care service.

Housing 21 uses competence based approach to give staff extra skills

22

These organisations working across health, socialcare and independent care homes have used thecore competences and principles to supportappraisals and identify training needs acrossclinical and non-clinical staff in care homes.

Chris Banks, End of Life Care Practice Facilitator(East Sussex) for the PCTs, explained: “The toolshave given managers and senior clinicians aclear way to establish what understanding andknowledge is needed and how this can be usedto support staff - whatever their role - in helpingus to give better care for residents in the carehomes.”

Managers reviewed the job descriptions androles of all team members (includingmaintenance and kitchen staff) for theknowledge and skills expected in relation to endof life care. The requirements were mapped tothe core competences and principles and staffused a questionnaire to assess their ownknowledge and skills.

This was all used in staff appraisals to see ifextra training and support were needed.

Managers are also using the tools to identifysuitable education and learning programmesbased around defined End of life care criteria -helping them to select appropriate courses fromlearning providers. Staff with high levels ofunderstanding will be used as role models andin-house trainers and the competences andprinciples will shape future job descriptions.

Further identified benefits include: • competences align to National Occupational

Standards, supporting a consistent approach to End of life care

• a more explicit framework for appraisal enables a clearer process and evaluation of End of life care skills and

• better-motivated care teams with staff feelingmore valued and recognised.

For more information call Chris Banks on07879 415 724 or emailChristine.banks@hastingsrotherpct.nhs.uk

End of life care tools used to enhance staff development across East Sussex care homes

23

• designing a new programme for all workers involved in some End of life care i.e. generalists within health, social and independent sector workforces and

• identifying End of life care skills gaps in the current workforce and ensuring training is offered to the whole workforce, not just those at the “sharp end”.

Nicole Woodyatt, Workforce Specialist for End ofLife Care NHS West Midlands, said: “Now thereal work begins and we can make a start byensuring the end of life principles become partof contracting and commissioning. We hopethat the proposed regional forum fornetworking and sharing good practice will helpus to embed the right practice and principles, sothat we can all face end of life care in a moreopen and up front manner.”

For more information emailNicole.Woodyatt@westmidlands.nhs.uk

The workforce deanery used the principles andcompetences as the basis for a local consultationon improving End of life care.

Commissioners, social care planners, domiciliarycare agencies, education providers, nursing andresidential homes, hospices and acute andprimary care trusts all took part.

The consultation confirmed widespread supportfor a Health and Social Care Network of End ofLife Champions across the West Midlands. Thiswill allow people to share resources and offersupport in the development of best practice.

The work has helped develop a consensus aboutthe skills required by the end of life careworkforce. That information will now be usedfor:• mapping End of life care knowledge and

understanding to curriculum content in undergraduate, postgraduate and non-accredited education and training programmes

NHS West Midlands Wo r k f o rce Deanery embraces region-wide approach to End of life care

24

Dorothy House Hospice Care used thecompetences and principles to develop a newgeneric worker role.

Head of Education Helen de Renzie-Brett said:“We used the new core competences for end oflife care as a starting point. They allowed us todescribe the ideal qualities for a person in thisrole - such as excellent communication skills,being able to recognise people’s needs and dealwith emotional circumstances - and then wemade these ‘ideal’ qualities an explicitrequirement within the job description.”

She feels the competences can be used topinpoint the qualities needed for any role,whether it be specialist nurse or volunteer driver.

The competences will also support managers toidentify the training and development needs ofnew recruits.

Helen says: “What is really exciting is how thiswork is enabling us to describe precisely theskills an individual needs so they can offerexactly the right care, using a nationally-recognised standard. It also offers a careerdevelopment opportunity for staff who couldprogress to the new role, which falls between aregistered professional nurse and a healthcaresupport assistant.”

For more information visitwww.dorothyhouse.co.uk

D o rothy House Hospice Care develops staff roles thanks to new tools

25

Assuming the evaluation proves positive, theprogramme - which reflects strong collaborationbetween the East Midlands Cancer Network, theworkforce development team, NightingaleMacMillan Unit, Ashgate Hospice and St GilesHospice - will be recommended as the keyintroduction course for End of life care in theregion.

Phil Mayor, Education Facilitator with the EastMidlands Cancer Network, hopes that if theevaluation is positive commissioners will adapt itto their own needs.

He says: “We see the evaluation of the pilotwork as a critical stage as this will help in thedevelopment of a ‘gold standard’ in learningand education for healthcare staff providing endof life care.”

For more information visitwww.mylearningspace.me.uk

Three hospices have joined with the EastMidlands Cancer Network and the SouthernDerbyshire Workforce Development Team topilot innovative training for healthcare staff.

The training package based on the corecompetences and principles - which was puttogether by Derby-Burton Local Cancer Network- will be launched in September 2009. Theprogramme will be extended from healthcarestaff to support staff if evaluation confirms itsvalue.

The course is a response to an identified needfor specialist training. It should help staff toidentify with the person receiving care and tobetter understand their needs and those offamily and friends.

Competences essential for care were ‘hand-picked’ to help create a work based learningand assessment programme which includes ascenario-based course delivered over three daysand a workbook to support learning and e-learning.

D e r b y - B u rton local cancer network develops training to support End of life care

26

Commissioners, providers and educators cametogether in Stoke-on-Trent to develop a trainingneeds analysis using the core principles andcompetences.

Laura Janda, Service Improvement andDevelopment Manager, said: “It enabled us touse a more focused approach acrosscommissioner, provider, education and training.By analysing training needs we were able toquickly establish what end of life careknowledge and understanding was missing andwhat we could do to address the need.”

Those involved in the work includedrepresentatives from both NHS Stoke-on-Trentcommissioning and providing arms, the End ofLife Clinical Lead for NHS Stoke-on- Trent,education representatives from the teaching PCTand End of life education providers from theDouglas Macmillan Hospice.

The training needs analysis was distributed todistrict nurses and their managers so that aworkforce profile could be compiled.

Benefits include:• allows the Douglas Macmillan Hospice and

the provider arm education provider to devisecourses to meet End of life care training needs

• helps to demonstrate how competence basedtraining and development meets End of life care learning needs

• enables providers to identify and address End of life care training needs

• enables providers with evidence that staff areworking to the End of life care principles

• a more confident workforce supports a betterservice for patients receiving End of life care

• NHS Stoke-on-Trent commissioners will use the competences when developing service specifications for new End of life services in the community

• helps ensure commissioned services aredelivered to support patient wishes and their End of life care needs and

• offers a means to ensure that services provided by generalist staff are in keeping with the core principles

• Future investment for End of life careeducation and training can be targeted to address outstanding need and

• NHS Stoke-on-Trent will be able to include the End of life care competences as a measure in service specifications for workforce planning.

Laura says: “As a commissioner having the endof life care resources has been useful becausethey have helped to get people moving in onedirection. It is helped by the fact that the coreprinciples and competences are sufficientlygeneric to work across different roles andoccupations and meet a range of organisationalneeds.”

For more information emailLaura.Janda@stokepct.nhs.uk

P a rtnership approach by Stoke on Trent PCT heralds new focus on End of life care

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A crucial factor in the progress made has beenthe group’s membership - PCT chief executivesand directors of commissioning and finance.

A key achievement includes a costing andanalysis for hospice activity and funding with aview to developing a sector-wide hospiceinpatient tariff.

Initially this involved calculating the cost of corepalliative care services - leading to an agreedprice per bed day. Each PCT’s activity - byhospice as well as current spend - was alsoanalysed.

The PCTs are now considering a variety ofoptions, ranging from a rate per bed day torates relating to episodes of care based oncurrent average length of stay and excess bedday rates. Agreement on a way forward for thesector is expected in the next few months.

www.nlcn.nhs.uk

Five primary care trusts (PCTs) formed acollaborative partnership to improve thecommissioning of End of life care, including thedevelopment of a sector-wide hospice inpatienttariff.

When they formed the group at the end of2007 they set the ambitious target of ensuringthat all patients approaching the end of lifewould be able to choose where they were caredfor regardless of their condition or care setting.

They have worked to strengthen commissioningand improve cross-boundary working.

Claire Henry, National Programme Director Endof Life Care, says: “Commissioning can seem adaunting concept but in fact it is at the heart ofall good care. In essence it’s about finding outwhat people need and then ensuring it isdelivered to the right people, at the right timeand to the best standards possible.”

A ‘joined up’ approach to collaborative commissioning in North Central London

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TIMELINE

Competences and core principles developed, consulted on and piloted acrosssocial and healthcare organisations. National conferences in June and July 09to launch working document, case studies from pilot sites andimplementation plan.

COMMUNICATIONS

Identify key stakeholders• Map, plus level and type of

engagement.• Raise awareness across health

and social care that the work exists utilising appropriate media

• Promote and provide support to organisations and individuals in using the competences and principles in workforcedevelopment at all levels

• Promote common terminology and understanding across health and social care EoLC workforce developments

• Ensure communications arelinked with other EoLC Foundation Projects (communications and e-learning) as well as the EoLC Programme

IDENTIFY GAPS

• Within the four coreareas (communications, ACP,assessment and symptommanagement

• Develop competences to complete existing framework

• Identify and develop additionalrelated competences, e.g. spirituality and well-being, careafter death, support for workers

• Issue updated guidance

IMPLEMENTATION PLAN

July 09 to March 10

June 08 to June 09

APPENDIX THREEEnd of Life Care (EoLC) competences and

c o re principles project - next steps

29

MAKE KEY LINKAGES

Levels• Undertake work to link to

recognised occupational standards and levels of development, e.g. Knowledge Skills Framework (KSF) and Qualifications and Credit Framework (QCF) plus others as appropriate

Other Professional Bodies• Work with medical Royal

Colleges/Association of Palliative Medicine and other health and social care professional bodies to ensure compatibility and consistency of approach across medical and non-medical workforce development

• Issue updated guidance

REVIEW AND UPDATE

• Identify review cycle processes to ensure competences aremaintained, updated and stillrelevant

• Review uptake and application ofcompetences as part of review cycle

• Ensure that review and update cycle is compatible and managedalong with other EoLC projects

• Issue updated guidance

July 09 to March 10

TIMELINE

Competences and core principles developed, consulted on and piloted acrosssocial and healthcare organisations. National conferences in June and July 09to launch working document, case studies from pilot sites andimplementation plan.

IMPLEMENTATION PLAN

June 08 to June 09

30

http://www.endoflifecareforadults.nhs.uk/eolc//acprsp.htm takes you straight to a page linking toresources for professional education, includingAdvance Care Planning in care homes for olderpeople, the Advance Care Planning guide,guidance around the Mental Capacity Act andlots more

www.helpthehospices.org.uk a really useful sitefor professionals, families and friends, includesinformation about carers’ assessments, youngcarers, death and dying

www.ncpc.org.uk The National Council forPalliative Care (NCPC) is the umbrellaorganisation for all those who are involved inproviding, commissioning and using palliativecare and hospice services in England, Wales &Northern Ireland. NCPC promotes the extensionand improvement of palliative care services forall people with life-threatening and life-limitingconditions. NCPC promotes palliative care inhealth and social care settings across all sectorsto government, national and local policy makers

www.skillsforcare.org.uk orwww.skillsforhealth.org.uk for a full descriptionof the National Occupational Standards forHealth and Social Care, and the Common CorePrinciples to Support Self Carehttp://www.skillsforcare.org.uk/publications/publications_c.aspx

www.who.int/cancer/palliative/en website of theWorld Health Organisation, includes informationabout palliative care

Department of Health End of Life Care StrategyJuly 2008

Department of Health Mental Capacity Act 2005

Department of Health The NHS Knowledge andSkills Framework (NHS KSF) and theDevelopment Review Process October 2004

Marie Curie Cancer Care Spiritual and ReligiousCare Competences for Specialist Palliative Care

National End of Life Care Programme/Universityof Nottingham “Advance Care Planning: A guidefor Health and Social Care Staff”

St Christopher’s guidelines for nursingcompetences

For individuals or organisations unable toaccess any of these documents electronically,these can be provided in paper form. Pleasecontact us at The National End of Life CareProgramme, 3rd Floor, St John's House, EastStreet, Leicester, LE1 6NB, listing thedocuments you are interested in, ortelephone 0116 222 5103

Other internet links

www.dca.gov.uk/legal-policy/mental-capacity/mca-summary.pdf for a helpfulsummary of the Mental Capacity Act (2005)http://www.endoflifecareforadults.nhs.uk/eolc/E551.htm takes you straight to the workforce pagewhere there are links to lots of pieces of workalready taking place to develop the EoLCworkforce

APPENDIX FOURUseful re s o u rc e s