The Ten Essential Shared CapabilitiesSupporting person-centred approaches

A learning resource for health care staff

Module 3

Module 3 Involving People

copy NHS Education for Scotland 2012 You can copy or reproduce the information in this document for use within NHSS-cotland and for non-commercial educational purposes Use of this document for commercial purposes is permitted only with the written permission of NES

Welcome to Module 3When we speak of ldquoinvolving peoplerdquo we are referring to involving people who use services and their familiescarers It is about promoting peoplersquos ability to lead their own care and treatment and to be involved in partnerships to develop services This module aims to support you to develop peoplersquos involvement in the way you practice and in the service in which you work It is important to recognise that people using services and their familiescarers can often have quite different needs that may call for different levels of understanding from services and different approaches to ensuring their needs are met This is discussed within the module

Learning outcomesAfter completing the module you will be able to

bull describe the links between service user involvement familycarer involvement and the 10 ESCs

bull discuss service user and familycarer involvement at individual organisational and strategic levels

bull explore local approaches to increasing service user and familycarer involvement in their own care and in service design

bull describe the approach to service user and familycarer involvement you would like to see developed in the team service or project in which you work

bull present ideas on how this improved approach can be achieved defining the role you and your immediate colleagues can play

We will explore peoplersquos involvement in relation to a number of stories of the people we introduced earlier Here is a reminder of what you know about them so far with an update on their stories

Jim (67) and his wife Mary (65)Jim is a retired joiner and Mary did lots of part-time jobs in-between taking time out to raise their two children They have three grandchildren

Mary has Parkinsonrsquos disease which limits her mobility and creates some problems with her dexterity Generally however she manages the condition pretty well Mary used to run the local girl guides and is still active in her church community helping with fund-raising and other activities She is a keen and very accomplished cook

Jim plays bowls regularly an activity he has pursued all his adult life and is secretary of the committee at his local bowling club Jim has also enjoyed reading and likes to keep up to date with politics and current affairs He is a keen gardener and has an allotment which he enjoys Jim has won competitions in the past for the fruit and vegetables he has produced He is finding however that he has gradually worsening short-term memory loss which is leading him to feel very down in mood

Welcome to Module 3

Jackie (22)Jackie is 22 years old and is unemployed She broke up with her partner three months ago The relationship was volatile and she was the victim of gender-based violence As a child she was the victim of abuse and has experienced periods of depression and anxiety since She struggles to keep her weight down is a smoker and has type 1 diabetes Jackie has a two-year-old daughter Tracey to whom she is devoted They live together in social housing but Jackie has difficulties in paying the rent despite receiving benefits

Jackiersquos ambition was to complete a college course to enable her to work with children Her mother Helen is very supportive to both Jackie and Tracey Her doctor has recently changed her insulin and Jackie has felt unwell since Despite her protestations the health and social services team supporting her want her to persevere with the new insulin as does her mother Jackie is not keen and her compliance with the new regime has been inconsistent leading to hospital admissions She has put weight on and has lost motivation to pursue her college course

Sheila (50) and Nan (75)Sheila lives at home with her mother Nan who is widowed She is 50 years old has a learning disability She works in a cafe run by an organisation that supports people with learning disability and is particularly fond of swimming and dancing attending local clubs for both activities She has a wide range of friends through work and leisure activities

Her mother Nan is 75 Nan was a Sunday school teacher and remains an active member of her local church She has a particular interest in art and occasionally paints watercolours as a hobby Her sister Claire lives in London but they remain in regular contact by phone Claire tries to visit as often as possible and has always had a close relationship with Sheila

Nanrsquos contribution to supporting Sheila is vital It is she who ensures that Sheila carries out daily tasks such as managing her hygiene dressing appropriately and preparing and eating food safely Nan is keen to support Sheila to maintain links with the local community

Welcome to Module 3

Mina (26)Mina is a 26-year-old Pakistani Scottish woman who married Aasim a year ago and is now pregnant with their first child Shersquos a practising Muslim On her marriage Mina moved from a city in central Scotland to live with Aasim and his parents and extended family in a remote and rural area some distance from any of the major cities Her husbandrsquos family is more traditional in outlook than Minarsquos and Mina has a tense relationship with her mother-in-law Zainab Mina misses city life and the circle of friends and activities she previously enjoyed and feels quite isolated She is a qualified pharmacist and really values her job She currently works part time in a community pharmacy in her local town

Derek (42)medication and physiotherapy Things are still not going well and his pain is impacting his life both physically and mentally He has had a number of spells of sick leave from work and is feeling very low in mood He is worried that his work colleagues are beginning to think negatively about him as he feels he is constantly letting them down and his manager has suggested he needs to be referred to occupational health His GP recently suggested that there is a certain degree of inevitability about the deterioration in his back Derek is getting older and the physiotherapy assessment suggests he has a long-standing injury that isnrsquot amenable to more invasive treatment The GP suggests that Derek may have to consider lifestyle changes including the option of possibly changing his job and suggests he might want to discuss this when he sees his occupational health services Derek feels quite despondent and hopeless after the consultation

Derek (42)Derek is an occupational therapist (OT) who works with his local authority He lives with his partner Angus He has a lifelong interest in rugby and was an accomplished player when younger He now coaches rugby at community level

Derek sustained a back injury in a former career as a physical education teacher in a secondary school the injury continues to give him chronic pain that is getting progressively worse Derekrsquos job as a community OT involves a lot of driving and he is finding his back is becoming particularly uncomfortable when in the car He is becoming worried that if he canrsquot drive he canrsquot work His fear is compounded by the fact that his back pain has caused him to take frequent short-term sickness absences over the last year and he suspects that this is creating resentment among his colleagues

Derek has been visiting his GP over the past few months about his pain and has been receiving

As you work through the module give particular thought to how the principles relate to ESC 1 minus Partnership Working and ESC 7 minus Providing Person-centred Care It is also vital to consider the involvement of userspatients and familiescarers from an equality and diversity perspective which we will explore in further detail in Module 4

Exploring InvolvementIn thinking about how to involve people it is important for them to see that it is a meaningful activity and not tokenistic It is also vital to consider how to involve diverse groups particularly those from minority or disadvantaged groups in society

Activity 31

Thinking about your own practice how do you currently support people using your service to be involved as partners in their care

Thinking again about your own practice how do you currently involve family memberscarers as partners in supporting service users

What support do you think people need to be involved

What support do you think familiescarers need to be involved as partners in individualsrsquo care

In your view what are the barriers that can prevent involvement

This could be considered by thinking through

bull organisational factorsbull values-based factorsbull care and treatment-orientated factorsbull other factors

Understanding peoplersquos experience as a starting pointHow do we know that we are providing a good service and that it is improving It is now widely recognised that to improve peoplersquos experience it is absolutely essential to regularly ask them what their experience has been and to use this information to make service improvements The national Better Together programme [httpwwwbettertogetherscotlandcombettertogetherscotland23html] is co-ordinating a number of different activities that include

Module 3 Involving People

copy NHS Education for Scotland 2012 You can copy or reproduce the information in this document for use within NHSS-cotland and for non-commercial educational purposes Use of this document for commercial purposes is permitted only with the written permission of NES

Welcome to Module 3When we speak of ldquoinvolving peoplerdquo we are referring to involving people who use services and their familiescarers It is about promoting peoplersquos ability to lead their own care and treatment and to be involved in partnerships to develop services This module aims to support you to develop peoplersquos involvement in the way you practice and in the service in which you work It is important to recognise that people using services and their familiescarers can often have quite different needs that may call for different levels of understanding from services and different approaches to ensuring their needs are met This is discussed within the module

Learning outcomesAfter completing the module you will be able to

bull describe the links between service user involvement familycarer involvement and the 10 ESCs

bull discuss service user and familycarer involvement at individual organisational and strategic levels

bull explore local approaches to increasing service user and familycarer involvement in their own care and in service design

bull describe the approach to service user and familycarer involvement you would like to see developed in the team service or project in which you work

bull present ideas on how this improved approach can be achieved defining the role you and your immediate colleagues can play

We will explore peoplersquos involvement in relation to a number of stories of the people we introduced earlier Here is a reminder of what you know about them so far with an update on their stories

Jim (67) and his wife Mary (65)Jim is a retired joiner and Mary did lots of part-time jobs in-between taking time out to raise their two children They have three grandchildren

Mary has Parkinsonrsquos disease which limits her mobility and creates some problems with her dexterity Generally however she manages the condition pretty well Mary used to run the local girl guides and is still active in her church community helping with fund-raising and other activities She is a keen and very accomplished cook

Jim plays bowls regularly an activity he has pursued all his adult life and is secretary of the committee at his local bowling club Jim has also enjoyed reading and likes to keep up to date with politics and current affairs He is a keen gardener and has an allotment which he enjoys Jim has won competitions in the past for the fruit and vegetables he has produced He is finding however that he has gradually worsening short-term memory loss which is leading him to feel very down in mood

Welcome to Module 3

Jackie (22)Jackie is 22 years old and is unemployed She broke up with her partner three months ago The relationship was volatile and she was the victim of gender-based violence As a child she was the victim of abuse and has experienced periods of depression and anxiety since She struggles to keep her weight down is a smoker and has type 1 diabetes Jackie has a two-year-old daughter Tracey to whom she is devoted They live together in social housing but Jackie has difficulties in paying the rent despite receiving benefits

Jackiersquos ambition was to complete a college course to enable her to work with children Her mother Helen is very supportive to both Jackie and Tracey Her doctor has recently changed her insulin and Jackie has felt unwell since Despite her protestations the health and social services team supporting her want her to persevere with the new insulin as does her mother Jackie is not keen and her compliance with the new regime has been inconsistent leading to hospital admissions She has put weight on and has lost motivation to pursue her college course

Sheila (50) and Nan (75)Sheila lives at home with her mother Nan who is widowed She is 50 years old has a learning disability She works in a cafe run by an organisation that supports people with learning disability and is particularly fond of swimming and dancing attending local clubs for both activities She has a wide range of friends through work and leisure activities

Her mother Nan is 75 Nan was a Sunday school teacher and remains an active member of her local church She has a particular interest in art and occasionally paints watercolours as a hobby Her sister Claire lives in London but they remain in regular contact by phone Claire tries to visit as often as possible and has always had a close relationship with Sheila

Nanrsquos contribution to supporting Sheila is vital It is she who ensures that Sheila carries out daily tasks such as managing her hygiene dressing appropriately and preparing and eating food safely Nan is keen to support Sheila to maintain links with the local community

Welcome to Module 3

Mina (26)Mina is a 26-year-old Pakistani Scottish woman who married Aasim a year ago and is now pregnant with their first child Shersquos a practising Muslim On her marriage Mina moved from a city in central Scotland to live with Aasim and his parents and extended family in a remote and rural area some distance from any of the major cities Her husbandrsquos family is more traditional in outlook than Minarsquos and Mina has a tense relationship with her mother-in-law Zainab Mina misses city life and the circle of friends and activities she previously enjoyed and feels quite isolated She is a qualified pharmacist and really values her job She currently works part time in a community pharmacy in her local town

Derek (42)medication and physiotherapy Things are still not going well and his pain is impacting his life both physically and mentally He has had a number of spells of sick leave from work and is feeling very low in mood He is worried that his work colleagues are beginning to think negatively about him as he feels he is constantly letting them down and his manager has suggested he needs to be referred to occupational health His GP recently suggested that there is a certain degree of inevitability about the deterioration in his back Derek is getting older and the physiotherapy assessment suggests he has a long-standing injury that isnrsquot amenable to more invasive treatment The GP suggests that Derek may have to consider lifestyle changes including the option of possibly changing his job and suggests he might want to discuss this when he sees his occupational health services Derek feels quite despondent and hopeless after the consultation

Derek (42)Derek is an occupational therapist (OT) who works with his local authority He lives with his partner Angus He has a lifelong interest in rugby and was an accomplished player when younger He now coaches rugby at community level

Derek sustained a back injury in a former career as a physical education teacher in a secondary school the injury continues to give him chronic pain that is getting progressively worse Derekrsquos job as a community OT involves a lot of driving and he is finding his back is becoming particularly uncomfortable when in the car He is becoming worried that if he canrsquot drive he canrsquot work His fear is compounded by the fact that his back pain has caused him to take frequent short-term sickness absences over the last year and he suspects that this is creating resentment among his colleagues

Derek has been visiting his GP over the past few months about his pain and has been receiving

As you work through the module give particular thought to how the principles relate to ESC 1 minus Partnership Working and ESC 7 minus Providing Person-centred Care It is also vital to consider the involvement of userspatients and familiescarers from an equality and diversity perspective which we will explore in further detail in Module 4

Exploring InvolvementIn thinking about how to involve people it is important for them to see that it is a meaningful activity and not tokenistic It is also vital to consider how to involve diverse groups particularly those from minority or disadvantaged groups in society

Activity 31

Thinking about your own practice how do you currently support people using your service to be involved as partners in their care

Thinking again about your own practice how do you currently involve family memberscarers as partners in supporting service users

What support do you think people need to be involved

What support do you think familiescarers need to be involved as partners in individualsrsquo care

In your view what are the barriers that can prevent involvement

This could be considered by thinking through

bull organisational factorsbull values-based factorsbull care and treatment-orientated factorsbull other factors

Understanding peoplersquos experience as a starting pointHow do we know that we are providing a good service and that it is improving It is now widely recognised that to improve peoplersquos experience it is absolutely essential to regularly ask them what their experience has been and to use this information to make service improvements The national Better Together programme [httpwwwbettertogetherscotlandcombettertogetherscotland23html] is co-ordinating a number of different activities that include

Welcome to Module 3When we speak of ldquoinvolving peoplerdquo we are referring to involving people who use services and their familiescarers It is about promoting peoplersquos ability to lead their own care and treatment and to be involved in partnerships to develop services This module aims to support you to develop peoplersquos involvement in the way you practice and in the service in which you work It is important to recognise that people using services and their familiescarers can often have quite different needs that may call for different levels of understanding from services and different approaches to ensuring their needs are met This is discussed within the module

Learning outcomesAfter completing the module you will be able to

bull describe the links between service user involvement familycarer involvement and the 10 ESCs

bull discuss service user and familycarer involvement at individual organisational and strategic levels

bull explore local approaches to increasing service user and familycarer involvement in their own care and in service design

bull describe the approach to service user and familycarer involvement you would like to see developed in the team service or project in which you work

bull present ideas on how this improved approach can be achieved defining the role you and your immediate colleagues can play

We will explore peoplersquos involvement in relation to a number of stories of the people we introduced earlier Here is a reminder of what you know about them so far with an update on their stories

Jim (67) and his wife Mary (65)Jim is a retired joiner and Mary did lots of part-time jobs in-between taking time out to raise their two children They have three grandchildren

Mary has Parkinsonrsquos disease which limits her mobility and creates some problems with her dexterity Generally however she manages the condition pretty well Mary used to run the local girl guides and is still active in her church community helping with fund-raising and other activities She is a keen and very accomplished cook

Jim plays bowls regularly an activity he has pursued all his adult life and is secretary of the committee at his local bowling club Jim has also enjoyed reading and likes to keep up to date with politics and current affairs He is a keen gardener and has an allotment which he enjoys Jim has won competitions in the past for the fruit and vegetables he has produced He is finding however that he has gradually worsening short-term memory loss which is leading him to feel very down in mood

Welcome to Module 3

Jackie (22)Jackie is 22 years old and is unemployed She broke up with her partner three months ago The relationship was volatile and she was the victim of gender-based violence As a child she was the victim of abuse and has experienced periods of depression and anxiety since She struggles to keep her weight down is a smoker and has type 1 diabetes Jackie has a two-year-old daughter Tracey to whom she is devoted They live together in social housing but Jackie has difficulties in paying the rent despite receiving benefits

Jackiersquos ambition was to complete a college course to enable her to work with children Her mother Helen is very supportive to both Jackie and Tracey Her doctor has recently changed her insulin and Jackie has felt unwell since Despite her protestations the health and social services team supporting her want her to persevere with the new insulin as does her mother Jackie is not keen and her compliance with the new regime has been inconsistent leading to hospital admissions She has put weight on and has lost motivation to pursue her college course

Sheila (50) and Nan (75)Sheila lives at home with her mother Nan who is widowed She is 50 years old has a learning disability She works in a cafe run by an organisation that supports people with learning disability and is particularly fond of swimming and dancing attending local clubs for both activities She has a wide range of friends through work and leisure activities

Her mother Nan is 75 Nan was a Sunday school teacher and remains an active member of her local church She has a particular interest in art and occasionally paints watercolours as a hobby Her sister Claire lives in London but they remain in regular contact by phone Claire tries to visit as often as possible and has always had a close relationship with Sheila

Nanrsquos contribution to supporting Sheila is vital It is she who ensures that Sheila carries out daily tasks such as managing her hygiene dressing appropriately and preparing and eating food safely Nan is keen to support Sheila to maintain links with the local community

Welcome to Module 3

Mina (26)Mina is a 26-year-old Pakistani Scottish woman who married Aasim a year ago and is now pregnant with their first child Shersquos a practising Muslim On her marriage Mina moved from a city in central Scotland to live with Aasim and his parents and extended family in a remote and rural area some distance from any of the major cities Her husbandrsquos family is more traditional in outlook than Minarsquos and Mina has a tense relationship with her mother-in-law Zainab Mina misses city life and the circle of friends and activities she previously enjoyed and feels quite isolated She is a qualified pharmacist and really values her job She currently works part time in a community pharmacy in her local town

Derek (42)medication and physiotherapy Things are still not going well and his pain is impacting his life both physically and mentally He has had a number of spells of sick leave from work and is feeling very low in mood He is worried that his work colleagues are beginning to think negatively about him as he feels he is constantly letting them down and his manager has suggested he needs to be referred to occupational health His GP recently suggested that there is a certain degree of inevitability about the deterioration in his back Derek is getting older and the physiotherapy assessment suggests he has a long-standing injury that isnrsquot amenable to more invasive treatment The GP suggests that Derek may have to consider lifestyle changes including the option of possibly changing his job and suggests he might want to discuss this when he sees his occupational health services Derek feels quite despondent and hopeless after the consultation

Derek (42)Derek is an occupational therapist (OT) who works with his local authority He lives with his partner Angus He has a lifelong interest in rugby and was an accomplished player when younger He now coaches rugby at community level

Derek sustained a back injury in a former career as a physical education teacher in a secondary school the injury continues to give him chronic pain that is getting progressively worse Derekrsquos job as a community OT involves a lot of driving and he is finding his back is becoming particularly uncomfortable when in the car He is becoming worried that if he canrsquot drive he canrsquot work His fear is compounded by the fact that his back pain has caused him to take frequent short-term sickness absences over the last year and he suspects that this is creating resentment among his colleagues

Derek has been visiting his GP over the past few months about his pain and has been receiving

As you work through the module give particular thought to how the principles relate to ESC 1 minus Partnership Working and ESC 7 minus Providing Person-centred Care It is also vital to consider the involvement of userspatients and familiescarers from an equality and diversity perspective which we will explore in further detail in Module 4

Exploring InvolvementIn thinking about how to involve people it is important for them to see that it is a meaningful activity and not tokenistic It is also vital to consider how to involve diverse groups particularly those from minority or disadvantaged groups in society

Activity 31

Thinking about your own practice how do you currently support people using your service to be involved as partners in their care

Thinking again about your own practice how do you currently involve family memberscarers as partners in supporting service users

What support do you think people need to be involved

What support do you think familiescarers need to be involved as partners in individualsrsquo care

In your view what are the barriers that can prevent involvement

This could be considered by thinking through

bull organisational factorsbull values-based factorsbull care and treatment-orientated factorsbull other factors

Understanding peoplersquos experience as a starting pointHow do we know that we are providing a good service and that it is improving It is now widely recognised that to improve peoplersquos experience it is absolutely essential to regularly ask them what their experience has been and to use this information to make service improvements The national Better Together programme [httpwwwbettertogetherscotlandcombettertogetherscotland23html] is co-ordinating a number of different activities that include

Welcome to Module 3

Jackie (22)Jackie is 22 years old and is unemployed She broke up with her partner three months ago The relationship was volatile and she was the victim of gender-based violence As a child she was the victim of abuse and has experienced periods of depression and anxiety since She struggles to keep her weight down is a smoker and has type 1 diabetes Jackie has a two-year-old daughter Tracey to whom she is devoted They live together in social housing but Jackie has difficulties in paying the rent despite receiving benefits

Jackiersquos ambition was to complete a college course to enable her to work with children Her mother Helen is very supportive to both Jackie and Tracey Her doctor has recently changed her insulin and Jackie has felt unwell since Despite her protestations the health and social services team supporting her want her to persevere with the new insulin as does her mother Jackie is not keen and her compliance with the new regime has been inconsistent leading to hospital admissions She has put weight on and has lost motivation to pursue her college course

Sheila (50) and Nan (75)Sheila lives at home with her mother Nan who is widowed She is 50 years old has a learning disability She works in a cafe run by an organisation that supports people with learning disability and is particularly fond of swimming and dancing attending local clubs for both activities She has a wide range of friends through work and leisure activities

Her mother Nan is 75 Nan was a Sunday school teacher and remains an active member of her local church She has a particular interest in art and occasionally paints watercolours as a hobby Her sister Claire lives in London but they remain in regular contact by phone Claire tries to visit as often as possible and has always had a close relationship with Sheila

Nanrsquos contribution to supporting Sheila is vital It is she who ensures that Sheila carries out daily tasks such as managing her hygiene dressing appropriately and preparing and eating food safely Nan is keen to support Sheila to maintain links with the local community

Welcome to Module 3

Mina (26)Mina is a 26-year-old Pakistani Scottish woman who married Aasim a year ago and is now pregnant with their first child Shersquos a practising Muslim On her marriage Mina moved from a city in central Scotland to live with Aasim and his parents and extended family in a remote and rural area some distance from any of the major cities Her husbandrsquos family is more traditional in outlook than Minarsquos and Mina has a tense relationship with her mother-in-law Zainab Mina misses city life and the circle of friends and activities she previously enjoyed and feels quite isolated She is a qualified pharmacist and really values her job She currently works part time in a community pharmacy in her local town

Derek (42)medication and physiotherapy Things are still not going well and his pain is impacting his life both physically and mentally He has had a number of spells of sick leave from work and is feeling very low in mood He is worried that his work colleagues are beginning to think negatively about him as he feels he is constantly letting them down and his manager has suggested he needs to be referred to occupational health His GP recently suggested that there is a certain degree of inevitability about the deterioration in his back Derek is getting older and the physiotherapy assessment suggests he has a long-standing injury that isnrsquot amenable to more invasive treatment The GP suggests that Derek may have to consider lifestyle changes including the option of possibly changing his job and suggests he might want to discuss this when he sees his occupational health services Derek feels quite despondent and hopeless after the consultation

Derek (42)Derek is an occupational therapist (OT) who works with his local authority He lives with his partner Angus He has a lifelong interest in rugby and was an accomplished player when younger He now coaches rugby at community level

Derek sustained a back injury in a former career as a physical education teacher in a secondary school the injury continues to give him chronic pain that is getting progressively worse Derekrsquos job as a community OT involves a lot of driving and he is finding his back is becoming particularly uncomfortable when in the car He is becoming worried that if he canrsquot drive he canrsquot work His fear is compounded by the fact that his back pain has caused him to take frequent short-term sickness absences over the last year and he suspects that this is creating resentment among his colleagues

Derek has been visiting his GP over the past few months about his pain and has been receiving

As you work through the module give particular thought to how the principles relate to ESC 1 minus Partnership Working and ESC 7 minus Providing Person-centred Care It is also vital to consider the involvement of userspatients and familiescarers from an equality and diversity perspective which we will explore in further detail in Module 4

Exploring InvolvementIn thinking about how to involve people it is important for them to see that it is a meaningful activity and not tokenistic It is also vital to consider how to involve diverse groups particularly those from minority or disadvantaged groups in society

Activity 31

Thinking about your own practice how do you currently support people using your service to be involved as partners in their care

Thinking again about your own practice how do you currently involve family memberscarers as partners in supporting service users

What support do you think people need to be involved

What support do you think familiescarers need to be involved as partners in individualsrsquo care

In your view what are the barriers that can prevent involvement

This could be considered by thinking through

bull organisational factorsbull values-based factorsbull care and treatment-orientated factorsbull other factors

Understanding peoplersquos experience as a starting pointHow do we know that we are providing a good service and that it is improving It is now widely recognised that to improve peoplersquos experience it is absolutely essential to regularly ask them what their experience has been and to use this information to make service improvements The national Better Together programme [httpwwwbettertogetherscotlandcombettertogetherscotland23html] is co-ordinating a number of different activities that include

Welcome to Module 3

Mina (26)Mina is a 26-year-old Pakistani Scottish woman who married Aasim a year ago and is now pregnant with their first child Shersquos a practising Muslim On her marriage Mina moved from a city in central Scotland to live with Aasim and his parents and extended family in a remote and rural area some distance from any of the major cities Her husbandrsquos family is more traditional in outlook than Minarsquos and Mina has a tense relationship with her mother-in-law Zainab Mina misses city life and the circle of friends and activities she previously enjoyed and feels quite isolated She is a qualified pharmacist and really values her job She currently works part time in a community pharmacy in her local town

Derek (42)medication and physiotherapy Things are still not going well and his pain is impacting his life both physically and mentally He has had a number of spells of sick leave from work and is feeling very low in mood He is worried that his work colleagues are beginning to think negatively about him as he feels he is constantly letting them down and his manager has suggested he needs to be referred to occupational health His GP recently suggested that there is a certain degree of inevitability about the deterioration in his back Derek is getting older and the physiotherapy assessment suggests he has a long-standing injury that isnrsquot amenable to more invasive treatment The GP suggests that Derek may have to consider lifestyle changes including the option of possibly changing his job and suggests he might want to discuss this when he sees his occupational health services Derek feels quite despondent and hopeless after the consultation

Derek (42)Derek is an occupational therapist (OT) who works with his local authority He lives with his partner Angus He has a lifelong interest in rugby and was an accomplished player when younger He now coaches rugby at community level

Derek sustained a back injury in a former career as a physical education teacher in a secondary school the injury continues to give him chronic pain that is getting progressively worse Derekrsquos job as a community OT involves a lot of driving and he is finding his back is becoming particularly uncomfortable when in the car He is becoming worried that if he canrsquot drive he canrsquot work His fear is compounded by the fact that his back pain has caused him to take frequent short-term sickness absences over the last year and he suspects that this is creating resentment among his colleagues

Derek has been visiting his GP over the past few months about his pain and has been receiving

As you work through the module give particular thought to how the principles relate to ESC 1 minus Partnership Working and ESC 7 minus Providing Person-centred Care It is also vital to consider the involvement of userspatients and familiescarers from an equality and diversity perspective which we will explore in further detail in Module 4

Exploring InvolvementIn thinking about how to involve people it is important for them to see that it is a meaningful activity and not tokenistic It is also vital to consider how to involve diverse groups particularly those from minority or disadvantaged groups in society

Activity 31

Thinking about your own practice how do you currently support people using your service to be involved as partners in their care

Thinking again about your own practice how do you currently involve family memberscarers as partners in supporting service users

What support do you think people need to be involved

What support do you think familiescarers need to be involved as partners in individualsrsquo care

In your view what are the barriers that can prevent involvement

This could be considered by thinking through

bull organisational factorsbull values-based factorsbull care and treatment-orientated factorsbull other factors

Understanding peoplersquos experience as a starting pointHow do we know that we are providing a good service and that it is improving It is now widely recognised that to improve peoplersquos experience it is absolutely essential to regularly ask them what their experience has been and to use this information to make service improvements The national Better Together programme [httpwwwbettertogetherscotlandcombettertogetherscotland23html] is co-ordinating a number of different activities that include

Exploring InvolvementIn thinking about how to involve people it is important for them to see that it is a meaningful activity and not tokenistic It is also vital to consider how to involve diverse groups particularly those from minority or disadvantaged groups in society

Activity 31

Thinking about your own practice how do you currently support people using your service to be involved as partners in their care

Thinking again about your own practice how do you currently involve family memberscarers as partners in supporting service users

What support do you think people need to be involved

What support do you think familiescarers need to be involved as partners in individualsrsquo care

In your view what are the barriers that can prevent involvement

This could be considered by thinking through

bull organisational factorsbull values-based factorsbull care and treatment-orientated factorsbull other factors

Understanding peoplersquos experience as a starting pointHow do we know that we are providing a good service and that it is improving It is now widely recognised that to improve peoplersquos experience it is absolutely essential to regularly ask them what their experience has been and to use this information to make service improvements The national Better Together programme [httpwwwbettertogetherscotlandcombettertogetherscotland23html] is co-ordinating a number of different activities that include

Exploring Involvementbull measuring experience through surveys

stories and focus groupsbull building on experience by collecting

information on what is important to patients carers and NHS staff and gaining information from health boards on how patient experience information is currently collected and used

bull learning from complaints by looking at ways to improve the collection and use of information from NHS complaints

Activity 32

How does your own service and organisation find out about individualsrsquo experience

What feedback do you get from surveys or complaints

What improvements have you or your service made as a result of what was fed back

Activity 33

The Better Together programme has conducted national surveys of patientsrsquo experiences for all GP practices and larger hospitals in Scotland survey results are available at [httpwwwbettertogetherscotlandcombettertogetherscotland24html]

Access the results that are most relevant for the area in which you work ndash results are available for health boards hospitals and GP practices so wherever you work there will be results of interest to you

Having looked at the results what do they indicate about the strengths of your service and areas that should be developed to improve peoplersquos experiences

In response to receiving the results from the first Scottish Inpatient Experience Survey in 2010 all health boards produced local action plans to improve the experiences of their patients

Exploring InvolvementFind out about the action plan developed by the health board most relevant to the area or service you work in Considering this in detail how you can contribute to delivering the actions set out

The Better Together programme has published details about how the statistics gained from its surveys are being used nationally and locally Table 31 includes some examples For full details see [httpwwwbettertogetherscotlandcombettertogetherscotlandfilesUses20and20decisions20informeddoc]

Table 31

Use ExampleInforming the general publicrsquos choicesabout service providers

about the performance of government and public bodies

Individual reports have been published for all GP practices and larger hospitals in Scotland A patientrsquos choice of which local GP practice to register with may be informed by these statistics

The national reports show the performance of NHSScotland A national indicator monitors the progress towards improving healthcare experience

Government decision-making about policies and associated decisions about related programmes and projects

policy-making

policy monitoring

The results have been used to develop policy locally and nationally For example the statistics demonstrated the need for work on the provision of translation interpreting and communication support services

The results have been used to monitor policies locally and nationally (such as Releasing Time to Care and the Scottish Patient Safety Programme)

Exploring Involvement

When people have been asked about their experiences of services they frequently speak about the ldquolittle things that make a big differencerdquo The significance of these little things is increasingly being recognised in the NHS and NES has created the Little Things Make a Big Difference resource [httpwwwknowledgescotnhsukmaking-a-differenceaspx] to support workers taking forward ways to improve experiences of people who use services and their familiescarers

Activity 34

Access the Little Things Make a Big Difference resource [httpwwwknowledgescotnhsukmaking-a-differencetouraspx] and undertake an initial tour

Note here areas you will prioritise for future visits

Use ExampleResource allocation ndash typically by central and local government

The patient experience statistics could be used to inform decisions on the allocation of NHS resources For example results have shown that patients in certain types of hospital have poorer experiences and this could conceivably be used as evidence for the reallocation of resources

Informing public marketing campaigns

It is likely that the results will be used to inform public marketing campaigns For example a survey of GP patients asks about out-of-hours services and could reveal a need for the general public to be informed about who to contact for out-of-hours care

Adapted from [httpwwwbettertogetherscotlandcombettertogetherscotlandfilesUses20and20decisions20in-formeddoc]

Levels of InvolvementService user and carer involvement can happen at different levels and in different ways Box 31 identifies three levels in which service user and carer involvement can take place

Box 31

Activity 35

Do you have examples of involvement at any of these levels If so describe them

You will be able to compare the examples you have identified with those provided later in the module

Involvement at individual level

Scotlandrsquos policy and legal context The Healthcare Quality Strategy for NHSScotland [httpwwwscotlandgovukPublications201005101023070] puts people at the heart of everything the health service does It encourages people to become partners in their own care The Patient Rights (Scotland) Act 2011 [httpwwwscotlandgovukTopicsHealthpatientrightsbill] sets out the rights of patients when accessing NHS services The Act introduces a patientsrsquo Charter of Rights and Responsibilities as well as a set of healthcare principles that health boards must take into account when developing and delivering services (see Box 32 on the following page)

Levels where service user and carer involvement can take placeIndividual

People being involved in their care and treatment in ways that meet their needs reflect their desired outcomes give them choices and control and involve them in all steps of the process Equally carers want to be recognised listened to and supported as partners in providing care

Organisational

People being able to influence services projects or organisations by ensuring they are designed and delivered to meet their needs and outcomes rather than them having to fit into an existing structure or system

Strategic

People being able to influence policy and service developments at all levels and in all relevant spheres to make sure law policy and services reflect the experiences expertise and needs of service users and carers Often it is about influencing the government service commissioners multi-agency planning partnerships and committees (such as community planning partnerships) and local funding bodies

Levels of InvolvementThese principles aim to ensure that we are truly delivering person-centred care and that patients are partners in the decisions and treatment that affect them The Act gives all patients the right that the health care they receive should

bull consider their needsbull consider what would be of optimum benefit to

thembull encourage them to take part in decisions

about their health and well-being and provide information and support for them to do so

Patients also have a right to give feedback (both positive and negative) or comments or raise concerns or complaints about the health care they have received

In 2010 the Scottish Government in partnership with COSLA launched the Self Directed Support A National Strategy for Scotland document [httpwwwscotlandgovukPublications2010110512081015] Self-directed support (SDS) aims to set out and drive a cultural shift around the delivery of support that views people as equal citizens with rights and responsibilities SDS can include direct payments systems these are the most obvious example of people being facilitated to choose what support they would like through directly purchasing services necessary to meet their needs SDS means giving people choice and control To find out more visit [httpwwwselfdirectedsupportscotlandorguk]

Patient Rights (Scotland) Act 2011 Healthcare PrinciplesPeople who provide NHS health care must uphold a set of Healthcare Principles when providing services The Principles are written in a Schedule at the back of the Patient Rights (Scotland) Act 2011 The Schedule is a list of actions that health boards must take The Schedule contains the following sectionsPatient Focus This means that patientsrsquo needs circumstances opinions and abilities must be taken into account when they receive healthcare It also means that privacy and confidentiality should be respected and that patients should receive any support they need so that they can access healthcareQuality Care and Treatment This means that healthcare should be based on current clinical guidelines and standards and should be provided in such a way as to avoid any unnecessary harm or injury to the patient Healthcare providers should give patients information about all of the options available to themPatient Participation This means that patients should be encouraged to take part in decisions about their health and well-being that they are given any information or support that they need and that they are encouraged to treat health care staff in an appropriate wayCommunication This means that patients should be communicated with in a way that they can understand and health care staff should make sure that the patient has understood the information given

Patient Feedback This means that any feedback comments concerns or complaints should be dealt with according to the NHS complaints procedureWaste of Resources This means that health care staff and patients should make sure that resources are used as efficiently as possible

Box 32

Levels of InvolvementThese principles aim to ensure that we are truly delivering person-centred care and that patients are partners in the decisions and treatment that affect them The Act gives all patients the right that the health care they receive should

bull consider their needsbull consider what would be of optimum benefit to

thembull encourage them to take part in decisions

about their health and well-being and provide information and support for them to do so

Patients also have a right to give feedback (both positive and negative) or comments or raise concerns or complaints about the health care they have received

In 2010 the Scottish Government in partnership with COSLA launched the Self Directed Support A National Strategy for Scotland document [httpwwwscotlandgovukPublications2010110512081015] Self-directed support (SDS) aims to set out and drive a cultural shift around the delivery of support that views people as equal citizens with rights and responsibilities SDS can include direct payments systems these are the most obvious example of people being facilitated to choose what support they would like through directly purchasing services necessary to meet their needs SDS means giving people choice and control To find out more visit [httpwwwselfdirectedsupportscotlandorguk]

Patient Rights (Scotland) Act 2011 Healthcare PrinciplesPeople who provide NHS health care must uphold a set of Healthcare Principles when providing services The Principles are written in a Schedule at the back of the Patient Rights (Scotland) Act 2011 The Schedule is a list of actions that health boards must take The Schedule contains the following sectionsPatient Focus This means that patientsrsquo needs circumstances opinions and abilities must be taken into account when they receive healthcare It also means that privacy and confidentiality should be respected and that patients should receive any support they need so that they can access healthcareQuality Care and Treatment This means that healthcare should be based on current clinical guidelines and standards and should be provided in such a way as to avoid any unnecessary harm or injury to the patient Healthcare providers should give patients information about all of the options available to themPatient Participation This means that patients should be encouraged to take part in decisions about their health and well-being that they are given any information or support that they need and that they are encouraged to treat health care staff in an appropriate wayCommunication This means that patients should be communicated with in a way that they can understand and health care staff should make sure that the patient has understood the information given

Patient Feedback This means that any feedback comments concerns or complaints should be dealt with according to the NHS complaints procedureWaste of Resources This means that health care staff and patients should make sure that resources are used as efficiently as possible

Box 32

Levels of InvolvementA Self-directed Support (Scotland) Bill is being introduced to the Scottish Parliament You should check the Scottish Government website [httpscotlandgovukTopicsHealthcaresdsbill] to keep up to date with progress on SDS legislation We will revisit and explore SDS in more detail in Module 5

Another example of personal involvement can be found in making an ldquoadvance statementrdquo (as recognised by the Mental Health (Care and Treatment) (Scotland) Act 2003) Advance statements have a specific legal meaning as part of the Act which is an agreement on how a person wishes to be treated for a mental disorder if they become unwell in the future and are unable to make decisions Advanced statements are often confused with terms such as ldquoadvance directivesrdquo ldquoadvance decisionsrdquo and ldquoliving willsrdquo which are increasingly being used by groups other than those accessing mental health services In Scotland there is no legal definition for these advance directives but the right to refuse treatment is well accepted in Scots law

A service user who has made an advance statement said

ldquoWriting an advance statement has made me feel that I have taken control of my care and treatment I feel more empowered and the whole process has given me an opportunity to think through my mental health history and what works for merdquo

Guidance on preparing and using advance

statements has been produced by the former Scottish Executive [httpwwwscotlandgovukPublications2004102001744082] and by the Consultation and Advocacy Promotion Service (CAPS) [httpwwwcapsadvocacyorg] and Advocard [httpwwwadvocardorguk] two independent organisations based in Edinburgh For people with dementia Alzheimerrsquos Scotland provides advice on advance statements and offers a template for people to use if they would like to complete one [httpwwwalzscotorgdownloadsAdvance20statement20templatertf] This includes information on treatments the individual would like and not like in the event of becoming ill and offers an opportunity to write a statement of their values that they would like to be considered covering issues such as

bull preferencesbull my spiritual and philosophical beliefs bull what makes life worth living bull dislikesbull what I fear mostbull attitudes to making decisions bull people who matterbull my attitudes to professionals who are treating

me and caring for mebull attitudes to illness and disabilitybull attitudes to death and dying

An independent advocacy worker [wwwsiaaorguk] can also enable people who use services to have more say in their care and feel more able to make choices about support options on offer

Levels of InvolvementIt would be useful for you to access guidance on advance statements produced by service user carer and advocacy organisations in your local area

Information-giving as a starting point to meaningfully involving peopleProviding adequate information in health or social care is an essential prerequisite to involvement and the development of trust when supporting people and their familiescarers It is essential that information is clear factual and empowers people

Some of the criticisms of information-giving in health services include

bull information that downplays or omits mention of side-effects risks uncertainties or controversies

bull the information given seeks to encourage compliance with what is proposed rather than engage people with the choices that are theirs to make

There can be additional challenges giving information if people using services have communication or cognitive difficulties and an individual approach to giving information should be taken We will develop this issue later in the module

Providing information well can support the development of equal and meaningful relationships between people using services and professionals and help people gain control and feel less anxious How we give and hold onto information can say a

lot about our value base both as individuals and as organisations Empowering and disempowering factors are shown in Box 33 below

Box 33

Empowering and disempowering factorsDisempowering factors Empowering factors

Information is kept between professionals

Professionals have a meeting before the meeting that the service user and familycarers are invited to because some things cannot be said in front of the service user or familycarers

Information is given in a manner that clearly suggests only one course of action rather than laying out the options available to the person

Referral letters are copied to the person they concern

Information is available in a range of accessible formats that takes account of language communication cognitive and cultural diversity

Systems are developed for service user held records

Service users make the decisions about what information is shared about them and with whom

Levels of InvolvementActivity 36

What do you think are the strengths and areas for development in your service in relation to information-giving at individual and organisational level How can developments be made to maximise participation for people who use your services Place your responses in the grid below

Involvement in care and treatment planningIt is essential to actively and meaningfully involve people in assessments reviews and decision making about their care support and treatment

Core components of effective and meaningful involvement include people

bull having the information they need to be involved in their health care

bull knowing what options and choices are available to them

Strengths in information-giving

Areas for development in information-giving

Developments that could maximise peoplersquos participation

Myself

My organisation

bull feeling free to express views wishes goals and their desired outcomes

bull being listened to and understood and having their views respected

bull being able to influence what happens and make decisions that matter

Levels of InvolvementActivity 37

We are going to use a rating system to explore involvement in assessment care and treatment planning in your team or service This will help you think about what promotes peoplersquos involvement and the ways in which this could be developed

What is your experience in your current role or setting with regard to each of the statements given in the left column below

People who use my servicepatients Always Occasionally Rarelyknow what is written in their assessments care plans and reports

write in their care plan

have regular opportunities to discuss their care and treatment with their key workernamed professionalconsultant

have the information they need (in a form in which they can use it) to be involved and know what their options and choices are

are able to express their views and wishes in their care plan and in their own words

Levels of InvolvementHaving completed this exercise what do you think are the priority areas for improvement

What actions could you take personally to increase peoplersquos involvement in assessment care and treatment planning

Person-centred support and planning Person-centred support and planning focuses on what individuals at the centre of care and treatment want and on their strengths rather than weaknesses Its success depends upon a willingness to come up with solutions that are not always traditional Programmes and services need to be geared to assisting the individual rather than people being asked to fit into the servicersquos approach and structure

Person-centred support appears self-explanatory with people leading their planning and support Implementation however requires a deep commitment to change which challenges individuals and services Person-centred planning tools are alive and active always ensuring the person is central and in control It is not one defined

process but a range of processes sharing the same underpinning values base and goal minus to help a person to move toward the life he or she wants and to get the right support in doing this

Although person-centred planning was originally developed for people with learning disabilities it is a tool that could be used for everyone individuals and organisations alike The process as well as the product is owned and controlled by the person (or sometimes family and friends) As there are no prescribed forms the resulting plan of support is totally individual It creates a comprehensive portrait of who the person is and what they want to do with their life and brings together all of the people who are important to the person including family friends neighbours support workers and other professionals involved in their lives

Person-centred planning radically changes power in relationships and person-centred tools create individual living profiles The process demands alliances between people and communities

Levels of InvolvementActivity 38

In this activity you will build on issues you have already considered in Activity 37

Think about a person you support and the last time there was an assessment or review meeting Now consider the questions below

You can find out more about person-centred planning and support in Module 4 of the Realising Recovery learning materials [httpwwwnesscotnhsukmedia582513875-nes-mentalhealth-coverintropdf] and Module 1 of Working with People who have a Learning Disability and Complex needs - the essentials [httpwwwnesscotnhsukmedia579631complex_needs_finalpdf]

While these resources have their source in mental health and learning disability they will have relevance to you in whatever area you work in and we encourage you to explore them The Little Things Make a Big Difference website [httpwwwknowledgescotnhsukmaking-a-differencemaking-a-differencedeveloping-patient-centred-approachesaspx] also has a wealth of materials and resources concerned with developing person-centred approaches

There is a close link between person-centred values and approaches and effective involvement of individuals in their care planning Approaches such as Wellness Recovery Action Planning (WRAP) in mental health [httpwwwscottishrecoverynetWRAPwellness-recovery-actions-planninghtml] have been developed to enable service users to manage their own care more effectively WRAP is a self-management tool this is now used in many countries around the world to help individuals take more control over their own well-being and recovery It emphasises that people are the experts in their own experience and is based on the premise there are no limits to recovery The SRN

Was the person at the centre of their review Did they arrange the meeting and choose who attended Were they in attendanceIf not can you say why

Were families and friends involved in the process

If not can you say whyDid the meeting feel as if the person was in chargeIf not can you say whyWho collected any information for the meeting Was the person leading or involved in collecting information for the meetingIf not can you say why

Levels of InvolvementActivity 36

What do you think are the strengths and areas for development in your service in relation to information-giving at individual and organisational level How can developments be made to maximise participation for people who use your services Place your responses in the grid below

Involvement in care and treatment planningIt is essential to actively and meaningfully involve people in assessments reviews and decision making about their care support and treatment

Core components of effective and meaningful involvement include people

bull having the information they need to be involved in their health care

bull knowing what options and choices are available to them

Strengths in information-giving

Areas for development in information-giving

Developments that could maximise peoplersquos participation

Myself

My organisation

bull feeling free to express views wishes goals and their desired outcomes

bull being listened to and understood and having their views respected

bull being able to influence what happens and make decisions that matter

Levels of InvolvementActivity 37

We are going to use a rating system to explore involvement in assessment care and treatment planning in your team or service This will help you think about what promotes peoplersquos involvement and the ways in which this could be developed

What is your experience in your current role or setting with regard to each of the statements given in the left column below

People who use my servicepatients Always Occasionally Rarelyknow what is written in their assessments care plans and reports

write in their care plan

have regular opportunities to discuss their care and treatment with their key workernamed professionalconsultant

have the information they need (in a form in which they can use it) to be involved and know what their options and choices are

are able to express their views and wishes in their care plan and in their own words

Levels of InvolvementHaving completed this exercise what do you think are the priority areas for improvement

What actions could you take personally to increase peoplersquos involvement in assessment care and treatment planning

Person-centred support and planning Person-centred support and planning focuses on what individuals at the centre of care and treatment want and on their strengths rather than weaknesses Its success depends upon a willingness to come up with solutions that are not always traditional Programmes and services need to be geared to assisting the individual rather than people being asked to fit into the servicersquos approach and structure

Person-centred support appears self-explanatory with people leading their planning and support Implementation however requires a deep commitment to change which challenges individuals and services Person-centred planning tools are alive and active always ensuring the person is central and in control It is not one defined

process but a range of processes sharing the same underpinning values base and goal minus to help a person to move toward the life he or she wants and to get the right support in doing this

Although person-centred planning was originally developed for people with learning disabilities it is a tool that could be used for everyone individuals and organisations alike The process as well as the product is owned and controlled by the person (or sometimes family and friends) As there are no prescribed forms the resulting plan of support is totally individual It creates a comprehensive portrait of who the person is and what they want to do with their life and brings together all of the people who are important to the person including family friends neighbours support workers and other professionals involved in their lives

Person-centred planning radically changes power in relationships and person-centred tools create individual living profiles The process demands alliances between people and communities

Levels of InvolvementActivity 38

In this activity you will build on issues you have already considered in Activity 37

Think about a person you support and the last time there was an assessment or review meeting Now consider the questions below

You can find out more about person-centred planning and support in Module 4 of the Realising Recovery learning materials [httpwwwnesscotnhsukmedia582513875-nes-mentalhealth-coverintropdf] and Module 1 of Working with People who have a Learning Disability and Complex needs - the essentials [httpwwwnesscotnhsukmedia579631complex_needs_finalpdf]

While these resources have their source in mental health and learning disability they will have relevance to you in whatever area you work in and we encourage you to explore them The Little Things Make a Big Difference website [httpwwwknowledgescotnhsukmaking-a-differencemaking-a-differencedeveloping-patient-centred-approachesaspx] also has a wealth of materials and resources concerned with developing person-centred approaches

There is a close link between person-centred values and approaches and effective involvement of individuals in their care planning Approaches such as Wellness Recovery Action Planning (WRAP) in mental health [httpwwwscottishrecoverynetWRAPwellness-recovery-actions-planninghtml] have been developed to enable service users to manage their own care more effectively WRAP is a self-management tool this is now used in many countries around the world to help individuals take more control over their own well-being and recovery It emphasises that people are the experts in their own experience and is based on the premise there are no limits to recovery The SRN

Was the person at the centre of their review Did they arrange the meeting and choose who attended Were they in attendanceIf not can you say why

Were families and friends involved in the process

If not can you say whyDid the meeting feel as if the person was in chargeIf not can you say whyWho collected any information for the meeting Was the person leading or involved in collecting information for the meetingIf not can you say why

Levels of InvolvementActivity 37

We are going to use a rating system to explore involvement in assessment care and treatment planning in your team or service This will help you think about what promotes peoplersquos involvement and the ways in which this could be developed

What is your experience in your current role or setting with regard to each of the statements given in the left column below

People who use my servicepatients Always Occasionally Rarelyknow what is written in their assessments care plans and reports

write in their care plan

have regular opportunities to discuss their care and treatment with their key workernamed professionalconsultant

have the information they need (in a form in which they can use it) to be involved and know what their options and choices are

are able to express their views and wishes in their care plan and in their own words

Levels of InvolvementHaving completed this exercise what do you think are the priority areas for improvement

What actions could you take personally to increase peoplersquos involvement in assessment care and treatment planning

Person-centred support and planning Person-centred support and planning focuses on what individuals at the centre of care and treatment want and on their strengths rather than weaknesses Its success depends upon a willingness to come up with solutions that are not always traditional Programmes and services need to be geared to assisting the individual rather than people being asked to fit into the servicersquos approach and structure

Person-centred support appears self-explanatory with people leading their planning and support Implementation however requires a deep commitment to change which challenges individuals and services Person-centred planning tools are alive and active always ensuring the person is central and in control It is not one defined

process but a range of processes sharing the same underpinning values base and goal minus to help a person to move toward the life he or she wants and to get the right support in doing this

Although person-centred planning was originally developed for people with learning disabilities it is a tool that could be used for everyone individuals and organisations alike The process as well as the product is owned and controlled by the person (or sometimes family and friends) As there are no prescribed forms the resulting plan of support is totally individual It creates a comprehensive portrait of who the person is and what they want to do with their life and brings together all of the people who are important to the person including family friends neighbours support workers and other professionals involved in their lives

Person-centred planning radically changes power in relationships and person-centred tools create individual living profiles The process demands alliances between people and communities

Levels of InvolvementActivity 38

In this activity you will build on issues you have already considered in Activity 37

Think about a person you support and the last time there was an assessment or review meeting Now consider the questions below

You can find out more about person-centred planning and support in Module 4 of the Realising Recovery learning materials [httpwwwnesscotnhsukmedia582513875-nes-mentalhealth-coverintropdf] and Module 1 of Working with People who have a Learning Disability and Complex needs - the essentials [httpwwwnesscotnhsukmedia579631complex_needs_finalpdf]

While these resources have their source in mental health and learning disability they will have relevance to you in whatever area you work in and we encourage you to explore them The Little Things Make a Big Difference website [httpwwwknowledgescotnhsukmaking-a-differencemaking-a-differencedeveloping-patient-centred-approachesaspx] also has a wealth of materials and resources concerned with developing person-centred approaches

There is a close link between person-centred values and approaches and effective involvement of individuals in their care planning Approaches such as Wellness Recovery Action Planning (WRAP) in mental health [httpwwwscottishrecoverynetWRAPwellness-recovery-actions-planninghtml] have been developed to enable service users to manage their own care more effectively WRAP is a self-management tool this is now used in many countries around the world to help individuals take more control over their own well-being and recovery It emphasises that people are the experts in their own experience and is based on the premise there are no limits to recovery The SRN

Was the person at the centre of their review Did they arrange the meeting and choose who attended Were they in attendanceIf not can you say why

Were families and friends involved in the process

If not can you say whyDid the meeting feel as if the person was in chargeIf not can you say whyWho collected any information for the meeting Was the person leading or involved in collecting information for the meetingIf not can you say why

Levels of InvolvementHaving completed this exercise what do you think are the priority areas for improvement

What actions could you take personally to increase peoplersquos involvement in assessment care and treatment planning

Person-centred support and planning Person-centred support and planning focuses on what individuals at the centre of care and treatment want and on their strengths rather than weaknesses Its success depends upon a willingness to come up with solutions that are not always traditional Programmes and services need to be geared to assisting the individual rather than people being asked to fit into the servicersquos approach and structure

Person-centred support appears self-explanatory with people leading their planning and support Implementation however requires a deep commitment to change which challenges individuals and services Person-centred planning tools are alive and active always ensuring the person is central and in control It is not one defined

process but a range of processes sharing the same underpinning values base and goal minus to help a person to move toward the life he or she wants and to get the right support in doing this

Although person-centred planning was originally developed for people with learning disabilities it is a tool that could be used for everyone individuals and organisations alike The process as well as the product is owned and controlled by the person (or sometimes family and friends) As there are no prescribed forms the resulting plan of support is totally individual It creates a comprehensive portrait of who the person is and what they want to do with their life and brings together all of the people who are important to the person including family friends neighbours support workers and other professionals involved in their lives

Person-centred planning radically changes power in relationships and person-centred tools create individual living profiles The process demands alliances between people and communities

Levels of InvolvementActivity 38

In this activity you will build on issues you have already considered in Activity 37

Think about a person you support and the last time there was an assessment or review meeting Now consider the questions below

You can find out more about person-centred planning and support in Module 4 of the Realising Recovery learning materials [httpwwwnesscotnhsukmedia582513875-nes-mentalhealth-coverintropdf] and Module 1 of Working with People who have a Learning Disability and Complex needs - the essentials [httpwwwnesscotnhsukmedia579631complex_needs_finalpdf]

While these resources have their source in mental health and learning disability they will have relevance to you in whatever area you work in and we encourage you to explore them The Little Things Make a Big Difference website [httpwwwknowledgescotnhsukmaking-a-differencemaking-a-differencedeveloping-patient-centred-approachesaspx] also has a wealth of materials and resources concerned with developing person-centred approaches

There is a close link between person-centred values and approaches and effective involvement of individuals in their care planning Approaches such as Wellness Recovery Action Planning (WRAP) in mental health [httpwwwscottishrecoverynetWRAPwellness-recovery-actions-planninghtml] have been developed to enable service users to manage their own care more effectively WRAP is a self-management tool this is now used in many countries around the world to help individuals take more control over their own well-being and recovery It emphasises that people are the experts in their own experience and is based on the premise there are no limits to recovery The SRN

Was the person at the centre of their review Did they arrange the meeting and choose who attended Were they in attendanceIf not can you say why

Were families and friends involved in the process

If not can you say whyDid the meeting feel as if the person was in chargeIf not can you say whyWho collected any information for the meeting Was the person leading or involved in collecting information for the meetingIf not can you say why

Levels of InvolvementActivity 38

In this activity you will build on issues you have already considered in Activity 37

Think about a person you support and the last time there was an assessment or review meeting Now consider the questions below

You can find out more about person-centred planning and support in Module 4 of the Realising Recovery learning materials [httpwwwnesscotnhsukmedia582513875-nes-mentalhealth-coverintropdf] and Module 1 of Working with People who have a Learning Disability and Complex needs - the essentials [httpwwwnesscotnhsukmedia579631complex_needs_finalpdf]

While these resources have their source in mental health and learning disability they will have relevance to you in whatever area you work in and we encourage you to explore them The Little Things Make a Big Difference website [httpwwwknowledgescotnhsukmaking-a-differencemaking-a-differencedeveloping-patient-centred-approachesaspx] also has a wealth of materials and resources concerned with developing person-centred approaches

There is a close link between person-centred values and approaches and effective involvement of individuals in their care planning Approaches such as Wellness Recovery Action Planning (WRAP) in mental health [httpwwwscottishrecoverynetWRAPwellness-recovery-actions-planninghtml] have been developed to enable service users to manage their own care more effectively WRAP is a self-management tool this is now used in many countries around the world to help individuals take more control over their own well-being and recovery It emphasises that people are the experts in their own experience and is based on the premise there are no limits to recovery The SRN

Was the person at the centre of their review Did they arrange the meeting and choose who attended Were they in attendanceIf not can you say why

Were families and friends involved in the process

If not can you say whyDid the meeting feel as if the person was in chargeIf not can you say whyWho collected any information for the meeting Was the person leading or involved in collecting information for the meetingIf not can you say why

Levels of Involvementhas been supporting the use of WRAP in Scotland

The LTCAS also promotes and supports a similar approach in the form of self-management [httpwwwmyconditionmylifeorg] which it describes as

bull a shared approach to setting goals and problem solving

bull signposting people to the type of support and information they need

bull having a more outcome-focused approach to planning and reviewing an individualrsquos situation

bull taking account of peoplersquos inherent ability for self-healing and recovery

bull acknowledging that each of us is the expert in our own life circumstances

Support for self-management involves close collaboration between the person living with a long-term condition and professionals Individuals families friends unpaid carers and service providers can share information agree goals and create a personalised care plan to guide care at home as well as in the clinical setting It is not about professionals handing over responsibility to individuals it is about helping people to gain more control

In health and social care we are increasingly talking about these issues in relation to the concept of ldquopersonalisationrdquo ldquoasset-based approachesrdquo and ldquooutcomes-focused practicerdquo which we will explore in more detail in Module 5

Maximising opportunities and overcoming barriers to involvement at an individual levelBarriers to involving people in their care and treatment that are sometimes in place include the following

bull Issues related to the person for example people may lose hope and confidence because of their health problems or may lose touch with friends relatives and communities making them feel excluded (familiescarers may experience similar difficulties) Being ill can make people feel very vulnerable which can mean that they fear repercussions if they question or complain

bull Service-related issues some people using health services and their familiescarers may have had previous negative experiences of health and other statutory services and professionals

bull Lack of accessible information although service providers may think they provide information there are many reasons why this might not be accessible to service userspatients and familiescarers increasing use of web-based materials for example can create barriers for some people

bull Institutional issues the way that institutions are set up or the cultures within them will impact strongly on how confident people feel about raising issues and concerns or deciding how to get involved

bull Societal issues some illnesses are perceived to carry a stigma (mental ill health dementia

Levels of Involvementbull and AIDS for example) meaning that people

can feel they will be discriminated against when looking for a job or accessing services discrimination and setbacks can have negative effects on someonersquos desire to remain involved in their care or to take part in activities related to their well-being ndash they may also feel that their opinions are worthless which could prevent them from contributing to service development

The 10 ESCs highlight things you can do to overcome barriers to involving people

bull ESC 3 Practising ethically hellip by ldquoacknowledging power differentials and minimising them whenever possiblerdquo

bull ESC 6 Identifying peoplersquos needs and strengths by ldquoworking to agreed needs preferred lifestyle and aspirationsrdquo

bull ESC 9 Promoting safety and risk enablement hellip by ldquoempowering the person to decide the level of risk they are prepared to take with their health and safetyrdquo

Actions that can contribute to developing peoplersquos confidence include

bull listening and responding to their needs and aspirations

bull providing accessible and comprehensive information

bull working to develop constructive relationships with people

bull basing assessments and plans on individualsrsquo strengths

bull always including people in planning

Issues in involving families and carers This module looks at service user and familycarer involvement It recognises that the needs of the different parties may differ but that there is also likely to be much similarity between them

Scotland has carersrsquo and young carersrsquo strategies that include the right for carers to have an assessment of their own physical and emotional needs and to get the right information to enable them to access services and provide the best possible care and support

The Scottish Government outlines in Caring Together [httpwwwscotlandgovukPublications201007231533040]1 an intention to develop a Carersrsquo Rights Charter that will consolidate existing rights in one place and will set out key principles of support to carers and outcomes The Scottish Government is also considering whether in the future carersrsquo rights should be enshrined in law You should check the Scottish Government website [httpwwwscotlandgovukTopicsHealth] to chart the progress of these commitments and the impact it may have on your practice and services

At the current time all health boards must develop carer information strategies that state how they intend to

bull identify carersbull inform carers of their rights to an assessment of

their own health needsbull ensure that carers receive the information they

require to continue their caring role

Levels of Involvementbull ensure that carers are treated as key partners in

care

The key messages that go along with this are that

bull it is vital that the role carers play is recognisedbull their expertise is acknowledged bull carer support is seen as a vital component

of anticipatory care rehabilitation self care and self-management of long-term conditions and the prevention of crisis and hospital readmission

In order to help meet these aims many health boards are introducing training for staff on carersrsquo needs and offering training for carers in partnership with voluntary organisations

Activity 39

Are you aware of any specific initiatives in your own organisation that are focusing on the needs of carers

Which voluntary organisations are you aware of that can provide support to carers in your area of practice

How would you go about making a referral for a carer assessment

For more information on carer organisations go to the Carers Scotland website [wwwcarerscotlandorg]

Consider this in relation to Jim and Maryrsquos developing story below

Jim and MaryJim whom we met earlier has found that his short-term memory problems are worsening which is worrying him greatly Mary feels he really should see his GP to discuss it and eventually he agrees Accompanied by Mary he describes to the GP the problems his memory lapses are presenting the effect it is having on his and Maryrsquos life and how ldquodownrdquo all this is making him feel The GP refers him for specialist assessment at a mental health memory clinic where he receives a diagnosis of dementia

The team at the memory clinic prescribe some

Levels of InvolvementActivity 310

Drawing on what you know about Jim and Mary so far

what issues do you think Jim would prioritise in terms of support and information

what issues do you think Mary would prioritise in terms of support and information

why did you opt for these issues

what practical steps could you take to help them access the support and information they need Think of as many possible means as you can

Please note it is beyond the scope of this educational resource to provide you with detailed

Jim and Marymedication that they assure Jim and Mary will help which pleases Mary greatly But both she and Jim are aware that medication on its own wonrsquot be enough ndash they are going to have to work hard to make sure Jim stays engaged and interested which they realise will not be easy especially given how down his mood has been in recent weeks

Mary feels she is about to face a major challenge Her first thoughts are about who to tell ndash what will she say to her family ndash and what can she do to try and ease the situation

One thing she is very concerned about even at this early stage is the thought of Jim entering a care home even just for a few days to give her a break Maryrsquos mother now lives in a care home and it has not been a positive experience for her Mary and the family

Jimrsquos thoughts at this point are very much about the future What will happen to him and Mary if hersquos no longer able to look after himself and what impact will all of this have on his children and grandchildren

Levels of Involvementinformation about how to support people with dementia and their families and carers but please see Box 34 for some essential information you should explore further

Box 34

Issues of confidentiality in involving families and carersIn the scenario earlier Jim was quite happy for Mary to be involved in his care and for information about him to be shared but this is not always the case Consider the example of Derek below

Supporting people with dementia - implications for your workDementia has been a national clinical priority in Scotland since 2007 Currently there are approximately 82 000 people with dementia in Scotland and this number is expected to double over the next 25 years

Scotlandrsquos National Dementia Strategy [httpwwwscotlandgovukResourceDoc3243770104420pdf] was launched in June 2010 outlining a number of key challenges and actions that require a significant change in the way health and social services in Scotland respond to people with dementia and their familiescarers

Actions set out in the strategy included the development of Standards of Care for Dementia in Scotland [httpwwwscotlandgovukPublications201105310854140] and Promoting Excellence - a framework for health and social services staff working with people with dementia their families and carers [httpwwwscotlandgovukPublications201105310853320] It is important that you familiarise yourself with these documents Please also visit the following websites where you will find a range of information and educational materials to help you develop your knowledge and skills in working with people with dementia and their families and carers

bull httpwwwnesscotnhsukeducation-and-trainingby-theme-initiativemental-health-and-learning-disabilitiespublications-and-resourcesaspx

bull httpwwwknowledgescotnhsukdementiaaspx

DerekDerek continues to struggle with his back pain and low mood and has recently been drinking alcohol heavily Derekrsquos partner Angus is becoming increasingly concerned about Derekrsquos drinking habits his time off work and his deteriorating mood He tries to discuss it with Derek who is dismissive He therefore makes an appointment with Dr Matheson Derekrsquos GP (who also happens to be his own GP) to discuss his concerns The GP knows Derek well and has a good grasp of the problems he faces but was not aware of the increased alcohol use Angus has just exposed However he says that due to confidentiality requirements he is unable to discuss any aspect of Derekrsquos care with him even though Angus is his long-term partner and the information Angus has just imparted is important in Derekrsquos overall plan of care

Activity 311

How do you think Angus might be feeling

Levels of InvolvementWhat support do you think the GP can offer Angus in this situation

What do you think the consequences might be if the GP gave Angus the information he wants

What should the GP do about the information Angus has given him about Derekrsquos alcohol use

Difficulties arising from ldquoconfidentialityrdquo have been a constant source of concern for carers over many years They often feel that confidentiality is presented as a barrier to them getting the information they need to be involved in peoplersquos care

Getting consent from the service user to enable you to speak to their carer about issues pertaining to them is essential However general information concerning the following would not involve breaking confidentiality

bull the condition or issue

bull possible course of the condition treatments medications and side effects

bull sources of support for carers such as information about caring carer organisations carer assessments and benefits for carers

The key issue is when it is appropriate or even necessary to disclose information Disclosure is only lawful and ethical if the individual has given consent to the information being passed on but disclosure without consent is necessary in some situations The term ldquopublic interestrdquo is used to describe the exceptional circumstances when this is permissible and is linked to broader social concerns Under common law staff are permitted to disclose personal information to prevent and support detection investigation and punishment of serious crime andor to prevent abuse or serious harm to others It is important therefore for professionals to openly discuss the issue of sharing information between service users and their familycarers

In these sort of cases always talk to your supervisor or line manager

Letrsquos also consider the following issue

Mina

Minarsquos mother-in-law Zainab was attending a doctorrsquos appointment English is not her first language and the doctor recognised that an interpreter would be needed Aisha offered Mina as an interpreter and the doctor accepted the offer The consultation took place and the GP concluded that treatment should be based on the

Levels of Involvement

Activity 312

What problems might arise from having a family member translate

What are the translation policies and options for accessing translation in your service

How can translation be used to support peoplersquos involvement in their care What issues do you need to consider

What might some of the practical difficulties of working with translatorsinterpreters be (a) for yourself and (b) for the service user Where possible draw on practical experience in your answer

A competency framework and toolkit on working with interpreters has been produced by NHS Health Scotland [httpwwwhealthscotlandcomdocuments5227aspx] and helpful guidance on working with interpreters has been produced by the Mental Welfare Commission for Scotland [wwwmwcscotorgukwebFILESPublicationsMWC_Interpreter_highrespdf]

Mina

information provided by Zainab through Minarsquos interpretation

Following the initial consultation the GP referred Zainab to a specialist appointment at a hospital outpatient clinic When Zainab arrived for the appointment accompanied by Mina the receptionist at the hospital informed her that the health boardrsquos policy did not permit family members to translate in consultations because of concerns about privacy and data protection The board provided a translator through their LanguageLine service In the consultation Zainab revealed a gynaecological problem which she had not mentioned to the GP As a result the specialist changed the treatment plan

a)

b)

Levels of Involvementinformation about how to support people with dementia and their families and carers but please see Box 34 for some essential information you should explore further

Box 34

Issues of confidentiality in involving families and carersIn the scenario earlier Jim was quite happy for Mary to be involved in his care and for information about him to be shared but this is not always the case Consider the example of Derek below

Supporting people with dementia - implications for your workDementia has been a national clinical priority in Scotland since 2007 Currently there are approximately 82 000 people with dementia in Scotland and this number is expected to double over the next 25 years

Scotlandrsquos National Dementia Strategy [httpwwwscotlandgovukResourceDoc3243770104420pdf] was launched in June 2010 outlining a number of key challenges and actions that require a significant change in the way health and social services in Scotland respond to people with dementia and their familiescarers

Actions set out in the strategy included the development of Standards of Care for Dementia in Scotland [httpwwwscotlandgovukPublications201105310854140] and Promoting Excellence - a framework for health and social services staff working with people with dementia their families and carers [httpwwwscotlandgovukPublications201105310853320] It is important that you familiarise yourself with these documents Please also visit the following websites where you will find a range of information and educational materials to help you develop your knowledge and skills in working with people with dementia and their families and carers

bull httpwwwnesscotnhsukeducation-and-trainingby-theme-initiativemental-health-and-learning-disabilitiespublications-and-resourcesaspx

bull httpwwwknowledgescotnhsukdementiaaspx

DerekDerek continues to struggle with his back pain and low mood and has recently been drinking alcohol heavily Derekrsquos partner Angus is becoming increasingly concerned about Derekrsquos drinking habits his time off work and his deteriorating mood He tries to discuss it with Derek who is dismissive He therefore makes an appointment with Dr Matheson Derekrsquos GP (who also happens to be his own GP) to discuss his concerns The GP knows Derek well and has a good grasp of the problems he faces but was not aware of the increased alcohol use Angus has just exposed However he says that due to confidentiality requirements he is unable to discuss any aspect of Derekrsquos care with him even though Angus is his long-term partner and the information Angus has just imparted is important in Derekrsquos overall plan of care

Activity 311

How do you think Angus might be feeling

Levels of InvolvementWhat support do you think the GP can offer Angus in this situation

What do you think the consequences might be if the GP gave Angus the information he wants

What should the GP do about the information Angus has given him about Derekrsquos alcohol use

Difficulties arising from ldquoconfidentialityrdquo have been a constant source of concern for carers over many years They often feel that confidentiality is presented as a barrier to them getting the information they need to be involved in peoplersquos care

Getting consent from the service user to enable you to speak to their carer about issues pertaining to them is essential However general information concerning the following would not involve breaking confidentiality

bull the condition or issue

bull possible course of the condition treatments medications and side effects

bull sources of support for carers such as information about caring carer organisations carer assessments and benefits for carers

The key issue is when it is appropriate or even necessary to disclose information Disclosure is only lawful and ethical if the individual has given consent to the information being passed on but disclosure without consent is necessary in some situations The term ldquopublic interestrdquo is used to describe the exceptional circumstances when this is permissible and is linked to broader social concerns Under common law staff are permitted to disclose personal information to prevent and support detection investigation and punishment of serious crime andor to prevent abuse or serious harm to others It is important therefore for professionals to openly discuss the issue of sharing information between service users and their familycarers

In these sort of cases always talk to your supervisor or line manager

Letrsquos also consider the following issue

Mina

Minarsquos mother-in-law Zainab was attending a doctorrsquos appointment English is not her first language and the doctor recognised that an interpreter would be needed Aisha offered Mina as an interpreter and the doctor accepted the offer The consultation took place and the GP concluded that treatment should be based on the

Levels of Involvement

Activity 312

What problems might arise from having a family member translate

What are the translation policies and options for accessing translation in your service

How can translation be used to support peoplersquos involvement in their care What issues do you need to consider

What might some of the practical difficulties of working with translatorsinterpreters be (a) for yourself and (b) for the service user Where possible draw on practical experience in your answer

A competency framework and toolkit on working with interpreters has been produced by NHS Health Scotland [httpwwwhealthscotlandcomdocuments5227aspx] and helpful guidance on working with interpreters has been produced by the Mental Welfare Commission for Scotland [wwwmwcscotorgukwebFILESPublicationsMWC_Interpreter_highrespdf]

Mina

information provided by Zainab through Minarsquos interpretation

Following the initial consultation the GP referred Zainab to a specialist appointment at a hospital outpatient clinic When Zainab arrived for the appointment accompanied by Mina the receptionist at the hospital informed her that the health boardrsquos policy did not permit family members to translate in consultations because of concerns about privacy and data protection The board provided a translator through their LanguageLine service In the consultation Zainab revealed a gynaecological problem which she had not mentioned to the GP As a result the specialist changed the treatment plan

a)

b)

Levels of InvolvementWhat support do you think the GP can offer Angus in this situation

What do you think the consequences might be if the GP gave Angus the information he wants

What should the GP do about the information Angus has given him about Derekrsquos alcohol use

Difficulties arising from ldquoconfidentialityrdquo have been a constant source of concern for carers over many years They often feel that confidentiality is presented as a barrier to them getting the information they need to be involved in peoplersquos care

Getting consent from the service user to enable you to speak to their carer about issues pertaining to them is essential However general information concerning the following would not involve breaking confidentiality

bull the condition or issue

bull possible course of the condition treatments medications and side effects

bull sources of support for carers such as information about caring carer organisations carer assessments and benefits for carers

The key issue is when it is appropriate or even necessary to disclose information Disclosure is only lawful and ethical if the individual has given consent to the information being passed on but disclosure without consent is necessary in some situations The term ldquopublic interestrdquo is used to describe the exceptional circumstances when this is permissible and is linked to broader social concerns Under common law staff are permitted to disclose personal information to prevent and support detection investigation and punishment of serious crime andor to prevent abuse or serious harm to others It is important therefore for professionals to openly discuss the issue of sharing information between service users and their familycarers

In these sort of cases always talk to your supervisor or line manager

Letrsquos also consider the following issue

Mina

Minarsquos mother-in-law Zainab was attending a doctorrsquos appointment English is not her first language and the doctor recognised that an interpreter would be needed Aisha offered Mina as an interpreter and the doctor accepted the offer The consultation took place and the GP concluded that treatment should be based on the

Levels of Involvement

Activity 312

What problems might arise from having a family member translate

What are the translation policies and options for accessing translation in your service

How can translation be used to support peoplersquos involvement in their care What issues do you need to consider

What might some of the practical difficulties of working with translatorsinterpreters be (a) for yourself and (b) for the service user Where possible draw on practical experience in your answer

A competency framework and toolkit on working with interpreters has been produced by NHS Health Scotland [httpwwwhealthscotlandcomdocuments5227aspx] and helpful guidance on working with interpreters has been produced by the Mental Welfare Commission for Scotland [wwwmwcscotorgukwebFILESPublicationsMWC_Interpreter_highrespdf]

Mina

information provided by Zainab through Minarsquos interpretation

Following the initial consultation the GP referred Zainab to a specialist appointment at a hospital outpatient clinic When Zainab arrived for the appointment accompanied by Mina the receptionist at the hospital informed her that the health boardrsquos policy did not permit family members to translate in consultations because of concerns about privacy and data protection The board provided a translator through their LanguageLine service In the consultation Zainab revealed a gynaecological problem which she had not mentioned to the GP As a result the specialist changed the treatment plan

a)

b)

Levels of Involvement

Activity 312

What problems might arise from having a family member translate

What are the translation policies and options for accessing translation in your service

How can translation be used to support peoplersquos involvement in their care What issues do you need to consider

What might some of the practical difficulties of working with translatorsinterpreters be (a) for yourself and (b) for the service user Where possible draw on practical experience in your answer

A competency framework and toolkit on working with interpreters has been produced by NHS Health Scotland [httpwwwhealthscotlandcomdocuments5227aspx] and helpful guidance on working with interpreters has been produced by the Mental Welfare Commission for Scotland [wwwmwcscotorgukwebFILESPublicationsMWC_Interpreter_highrespdf]

Mina

information provided by Zainab through Minarsquos interpretation

Following the initial consultation the GP referred Zainab to a specialist appointment at a hospital outpatient clinic When Zainab arrived for the appointment accompanied by Mina the receptionist at the hospital informed her that the health boardrsquos policy did not permit family members to translate in consultations because of concerns about privacy and data protection The board provided a translator through their LanguageLine service In the consultation Zainab revealed a gynaecological problem which she had not mentioned to the GP As a result the specialist changed the treatment plan

a)

b)

Levels of InvolvementInvolving people - issues with capacity and consent

In your answer you should have placed an emphasis on the importance of understanding the nature of the decision the consequences of the decision and being able to retain that information You should also have stressed that capacity is not an ldquoall-or-nothingrdquo concept ndash a person may not have capacity at a particular point in time or for a particular decision but this does not mean that they will never have capacity to make any decisions You may also have discussed that incapacity can be inherited or acquired temporary fluctuating or permanent

The starting point for assessing someonersquos capacity to make a particular decision is always the assumption that the individual has capacity The burden of proof in legal proceedings will fall on the person who asserts that capacity is lacking Most often incapacity is recognised and appropriate protection is put in place At other times however capacity may be questioned inappropriately because an individual simply has difficulty understanding or communicating information There may also be situations where professionals fail to detect incapacity One study found that almost one third of patients in an accident and emergency department lacked capacity but that less than one third were identified as such2

Part 5 of the Adults with Incapacity (Scotland) Act 2000 addresses medical treatment and research There are very specific requirements for the assessment of capacity when it relates to consent for medical treatment Normally an assessment under Part 5 of the Act should seek to determine

Nan and Sheila

Shortly after her 50th birthday Sheila received her first invitation for bowel screening Nan supported Sheila to collect the samples required and the test results have now come back showing that blood has been found in her sample Sheila has been asked to attend an outpatient appointment for a colonoscopy a further test for finding bowel cancer As we have established Sheila has a learning disability and is supported by her mother Nan Because of Sheilarsquos learning disability issues are raised as to whether she can give informed consent for this procedure and what role her mother could play in giving consent on her behalf

There are important issues concerning medical treatment in Sheilarsquos scenario and these are capacity consent principles and legislation

Activity 313

How would you define capacity

Levels of Involvementwhether the adult

bull is capable of making and communicating their choice

bull understands the nature of what is being asked and why

bull has memory abilities that allow the retention of information

bull is aware of any alternativesbull has knowledge of the risks and benefits

involved bull is aware that such information is of personal

relevance to them bull is aware of their right to and how to refuse as

well as the consequences of refusal bull has ever expressed their wishes relevant to the

issue when greater capacity existed bull is expressing views consistent with their

previously preferred moral cultural family and experiential background

bull is not under undue influence from a relative carer or other third party declaring an interest in the care and treatment of the adult

People have a fundamental legal ethical and moral right to determine what happens to their own bodies and healthcare professionals must respect that right to autonomy Individuals must therefore give valid consent to all forms of health care whether this is personal care or major surgery

Activity 314

What do you understand by the term informed consent

In your answer you should have emphasised the fact that consent is a process rather than a one-off decision It should be seen as the voluntary and continuing permission of a person to receive a particular treatment or procedure based on adequate knowledge and understanding of

bull the purposebull the naturebull any likely effectsbull any significant risks of that treatment including

the likelihood of its success and outcomesbull consequences of either no treatment or an

alternative treatment

The steps in the process include discussion with the person provision of verbal and written information and the explanation of risks and benefits It is important to demonstrate that information on a defined procedureintervention is presented and described in a manner that aids the personrsquos understanding it may for example need to be presented in simplified language or pictorialgraphic format or in ways that will accommodate sensory impairments such as visual and hearing impairment This will aid in clarifying and informing

Levels of Involvementcapacity For an example of this see the advice provided by the NHS Cancer Screening Programme in An Easy Guide to Having a Colonoscopy a leaflet prepared for men and women with learning disabilities [httpwwwcancerscreeningnhsukbowelpublicationsnhsbcsp-colonoscopy-learning-disabilities-leaflethtml] All of these steps you take to establish consent should be formally documented A person must be properly informed about the risks benefits and consequences of any proposed treatment and that of possible alternatives before signing a consent from

Activity 315

Access your own organisationrsquos policy on consent and assess how it addresses the issues raised in Sheilarsquos story

If it was determined that Sheila could not give consent safeguards and protection are provided by the Adults with Incapacity (Scotland) Act 2000 Part 5 of the Act includes medical treatment for non-emergency treatment where the adult is unable to express his or her treatment wishes A ldquoSection 47rdquo certificate of incapacity allows doctors and others the general authority to treat The certificate of incapacity takes the place of the patientrsquos consent but certain conditions apply

bull there must be a specific treatment bull the adult must be unable to consentbull the treatment must comply with the principles of

the Actbull relatives and carers should be consultedbull treatment should be a positive intervention

in the patientrsquos condition and promote or safeguard physical or mental health

The involvement of Nan as Sheilarsquos mother in assessment of capacity is a specific requirement of one of the principles of the Act (relatives and others with an interest in the welfare of the adult must be consulted)

In relation to consent to treatment there are a number of possibilities in addition to seeking consent from Sheila It may be that Sheila has previously been assessed as incapable and has a certificate of incapacity that includes a treatment plan which is put in place where a person is likely to require multiple medical interventions However she would still need to be assessed by the medical practitioner who issued the certificate and if agreed this procedure could be added to the treatment plan

Consent could also be sought from an appointed proxy Sheila could have appointed Nan or another person as her Welfare Attorney while she still had capacity to do so in which case that person could give consent This can only be accepted where a certificate of registration is provided and a certificate of incapacity would still need to be completed Where Sheila has not been able to

Levels of Involvementwhether the adult

bull is capable of making and communicating their choice

bull understands the nature of what is being asked and why

bull has memory abilities that allow the retention of information

bull is aware of any alternativesbull has knowledge of the risks and benefits

involved bull is aware that such information is of personal

relevance to them bull is aware of their right to and how to refuse as

well as the consequences of refusal bull has ever expressed their wishes relevant to the

issue when greater capacity existed bull is expressing views consistent with their

previously preferred moral cultural family and experiential background

bull is not under undue influence from a relative carer or other third party declaring an interest in the care and treatment of the adult

People have a fundamental legal ethical and moral right to determine what happens to their own bodies and healthcare professionals must respect that right to autonomy Individuals must therefore give valid consent to all forms of health care whether this is personal care or major surgery

Activity 314

What do you understand by the term informed consent

In your answer you should have emphasised the fact that consent is a process rather than a one-off decision It should be seen as the voluntary and continuing permission of a person to receive a particular treatment or procedure based on adequate knowledge and understanding of

bull the purposebull the naturebull any likely effectsbull any significant risks of that treatment including

the likelihood of its success and outcomesbull consequences of either no treatment or an

alternative treatment

The steps in the process include discussion with the person provision of verbal and written information and the explanation of risks and benefits It is important to demonstrate that information on a defined procedureintervention is presented and described in a manner that aids the personrsquos understanding it may for example need to be presented in simplified language or pictorialgraphic format or in ways that will accommodate sensory impairments such as visual and hearing impairment This will aid in clarifying and informing

Levels of Involvementcapacity For an example of this see the advice provided by the NHS Cancer Screening Programme in An Easy Guide to Having a Colonoscopy a leaflet prepared for men and women with learning disabilities [httpwwwcancerscreeningnhsukbowelpublicationsnhsbcsp-colonoscopy-learning-disabilities-leaflethtml] All of these steps you take to establish consent should be formally documented A person must be properly informed about the risks benefits and consequences of any proposed treatment and that of possible alternatives before signing a consent from

Activity 315

Access your own organisationrsquos policy on consent and assess how it addresses the issues raised in Sheilarsquos story

If it was determined that Sheila could not give consent safeguards and protection are provided by the Adults with Incapacity (Scotland) Act 2000 Part 5 of the Act includes medical treatment for non-emergency treatment where the adult is unable to express his or her treatment wishes A ldquoSection 47rdquo certificate of incapacity allows doctors and others the general authority to treat The certificate of incapacity takes the place of the patientrsquos consent but certain conditions apply

bull there must be a specific treatment bull the adult must be unable to consentbull the treatment must comply with the principles of

the Actbull relatives and carers should be consultedbull treatment should be a positive intervention

in the patientrsquos condition and promote or safeguard physical or mental health

The involvement of Nan as Sheilarsquos mother in assessment of capacity is a specific requirement of one of the principles of the Act (relatives and others with an interest in the welfare of the adult must be consulted)

In relation to consent to treatment there are a number of possibilities in addition to seeking consent from Sheila It may be that Sheila has previously been assessed as incapable and has a certificate of incapacity that includes a treatment plan which is put in place where a person is likely to require multiple medical interventions However she would still need to be assessed by the medical practitioner who issued the certificate and if agreed this procedure could be added to the treatment plan

Consent could also be sought from an appointed proxy Sheila could have appointed Nan or another person as her Welfare Attorney while she still had capacity to do so in which case that person could give consent This can only be accepted where a certificate of registration is provided and a certificate of incapacity would still need to be completed Where Sheila has not been able to

Levels of Involvementcapacity For an example of this see the advice provided by the NHS Cancer Screening Programme in An Easy Guide to Having a Colonoscopy a leaflet prepared for men and women with learning disabilities [httpwwwcancerscreeningnhsukbowelpublicationsnhsbcsp-colonoscopy-learning-disabilities-leaflethtml] All of these steps you take to establish consent should be formally documented A person must be properly informed about the risks benefits and consequences of any proposed treatment and that of possible alternatives before signing a consent from

Activity 315

Access your own organisationrsquos policy on consent and assess how it addresses the issues raised in Sheilarsquos story

If it was determined that Sheila could not give consent safeguards and protection are provided by the Adults with Incapacity (Scotland) Act 2000 Part 5 of the Act includes medical treatment for non-emergency treatment where the adult is unable to express his or her treatment wishes A ldquoSection 47rdquo certificate of incapacity allows doctors and others the general authority to treat The certificate of incapacity takes the place of the patientrsquos consent but certain conditions apply

bull there must be a specific treatment bull the adult must be unable to consentbull the treatment must comply with the principles of

the Actbull relatives and carers should be consultedbull treatment should be a positive intervention

in the patientrsquos condition and promote or safeguard physical or mental health

The involvement of Nan as Sheilarsquos mother in assessment of capacity is a specific requirement of one of the principles of the Act (relatives and others with an interest in the welfare of the adult must be consulted)

In relation to consent to treatment there are a number of possibilities in addition to seeking consent from Sheila It may be that Sheila has previously been assessed as incapable and has a certificate of incapacity that includes a treatment plan which is put in place where a person is likely to require multiple medical interventions However she would still need to be assessed by the medical practitioner who issued the certificate and if agreed this procedure could be added to the treatment plan

Consent could also be sought from an appointed proxy Sheila could have appointed Nan or another person as her Welfare Attorney while she still had capacity to do so in which case that person could give consent This can only be accepted where a certificate of registration is provided and a certificate of incapacity would still need to be completed Where Sheila has not been able to

Levels of Involvementappoint someone while she still has capacity Nan or another person may be a Guardian or be authorised under an intervention order to give consent It is important to establish if a proxy has been appointed and you could contact the Public Guardian or the local authority for confirmation and details of who this is if Nan does not have this information It is illegal for a relative or another person to give consent without these proxy powers

To learn more about capacity and consent the Mental Welfare Commission has produced some useful guidance called Consent to Treatment [httpreportsmwcscotorgukwebFILESMWC_ConsentToTreatment_Webpdf] and Right to Treat [httpreportsmwcscotorgukwebFILESMWC_ConsentToTreatment_Webpdf] To learn more about legislation that is in place to safeguard people visit the educational resource Respecting and Protecting Adults at Risk in Scotland ndash Legislation and Practice [httpwwwnesscotnhsukmedia351190respecting_and_protecting_adults_at_risk_in_scotland_2011pdf]

Creating an environment for involvementProviding information alone is not enough for partnership An environment in which people are encouraged to speak up and take part is equally important

Values integral to creating this sort of environment are reflected in several of the ESCs For example

bull ESC 2 minus Respecting diversity which is about working with individuals families and carers accepting each person for who he or she is and celebrating and embracing differences

bull ESC 3 minus Practising ethically which highlights the importance of recognising the rights and aspirations of service users

bull ESC 4 minus Challenging inequality which highlights the need to address the causes and consequences of stigma discrimination and social inequality all of which can be barriers to service user involvement

Promoting service user and carer involvement means that service users and their carers should be treated as equals but existing or historical relationships of unequal power between service userscarers and service providers can present a barrier to this

Levels of InvolvementActivity 316

Keep in mind ESC 3 (Practising ethically) and ESC 9 (Promoting safety and risk enablement) as you read through the scenario below

What do you think the specialist diabetes nursersquos priorities are

How should the specialist diabetes nurse manage tensions in the declared priorities

What would be the opportunities and barriers to Jackiersquos meaningful involvement in her care

How does the process of decision-making either enable or hinder Jackiersquos involvement

Power is an important issue in involving service users and carers Misuse of power by workers leads to poor experiences for service users and carers As Thomson3 puts it

ldquoPower is the ability to influence and control people events and processes It is an ever-present phenomenonrdquo

Jackiersquos admission

Jackiersquos issues with managing her diabetes continue She collapses and is taken to AampE in a hyperglycaemic episode She is admitted to the specialist diabetes ward to ensure her blood glucose can be stabilised While there she and her specialist diabetes nurse whom she knows from previous outpatients appointments discuss how things are changing in her life With the nursersquos support Jackie becomes aware that the extra pressures she is currently facing may be having an impact on her health Although Jackie is initially reluctant to accept any modifications to her lifestyle or her medication she agrees to work with the nurse on developing a revised self-management plan

Here are some questions to consider

How would you find out what Jackiersquos priorities are

Levels of InvovlementActivity 317

Think of times when you have power or lack power in your current role

I have power when

I lack power when

Discuss where there may be a tension or conflict relating to power in your relationship with carers and service users

How can you use your power to help others become empowered

Another way of overcoming barriers to promoting service user and carer involvement is linked to ESC 6 minus Identifying peoplersquos needs and strengths which is about acknowledging and building on individualsrsquo strengths and supports in your work This is explored in more detail in Module 5

Involvement at organisational level

Involvement at an organisational level is when people have opportunities to work with others who also use services or support people who use services in for instance an active service usercarer group collective advocacy group publicpatient involvement group service management or planning group These forums give people an opportunity to speak up about concerns evaluate services suggest improvements and decide on action If involvement is effective changes will result

Example - Involvement at organisational level

The complaints officer of a general hospital realises that the hospital has received a number of complaints recently regarding the care of people with dementia in general wards She raises it at her senior management meeting where the senior nurse suggests that a group of staff from across the service former patients who have dementia and their carers be brought together to develop a set of standards for care of people with dementia in the hospital The nurse manager suggests that a person from Alzheimerrsquos Scotland be invited to facilitate the group She also identifies a senior charge nurse in the medical unit who has a particular interest in the care of older people generally and people with dementia in particular who she will approach with a view to adopting a ldquodementia championrdquo role across the hospital advising colleagues liaising with patients and carers and driving good practice

Levels of InvolvementMost NHS organisations have specific policies on involving people in the design and review of health services These are based on statutory requirements and guidance issued by the Scottish Government This includes the creation of Public Partnership Forums (PPFs) [httpwwwclinicalgovernancescotnhsuksection4Partnershipforumsasp] which are based in Community Health (and Care) Partnerships (CH(C)Ps) These forums give people an opportunity to speak up about concerns evaluate services suggest improvements and decide on action If involvement is effective changes will result We also need to remember to show how peoplersquos involvement has made a difference

It is however important that these more formal bodies should not be the only ways of involving people Sometimes it is necessary to go beyond these groups and seek the views and involvement of the wider public and users to ensure true representation

We are going to use another rating system to help us think about ways in which involvement can happen at the wider organisational level

Activity 318

Reflect on your experience in your current role or setting and answer the questions in the grid below

To what extent are service users and carers able to

Always Sometimes Rarely

design and take part in surveysauditsresearch on care issuesjoin self-help service user or campaigning groups which raise issues and are consulted by service providersbecome representatives on management clinical governance or planning groups

take part in learning events for people from across the mental health community

find employment in mental health services

interview and help to appoint staff

be involved in finance policy and activity planning for a service(s)

run services

Levels of InvovlementWhat could you do to influence the areas where this is only occasionally or rarely happening

With whom might you form alliances to bring about change

What do you think are going to be the benefits of this involvement

The Scottish Health Council (SHC) [httpwwwscottishhealthcouncilorg] was established in April 2005 to promote ldquopatient focus and public involvementrdquo in NHSScotland An aim of SHC is to support achievement of a ldquomutual NHSrdquo in which the NHS works in partnership with patients carers and the public to take account of peoplersquos views

One of SHCrsquos functions is ldquoparticipation reviewrdquo which focuses primarily on two areas of participation

bull how health boards are involving people in the general design of services

bull how they are consulting them in relation to major service change

The SHC also developed an NHSScotland participation standard [httpwwwscottishhealthcouncilorgshcpfpistandardParticipation_Standard] The standard covers three aspects of participation

bull patient focus minus care and services are provided in partnership with patients treating individuals with dignity and respect and are responsive to age disability gender race religion or belief sexual orientation and transgender status

bull public involvement minus there is supported and effective involvement of people in service planning and improvement

bull governance minus robust corporate governance arrangements are in place for involving people founded on mutuality equality diversity and human rights principles

If you work in the NHS you may want to find out about how your organisation is responding to the requirements of the participation standard Find out who leads for patient focus and public involvement in your organisation who will be able to provide this information

Services are increasingly recognising the strengths and contributions of people who have experienced health problems In mental health services for example peer support specialists are individuals who are employed in recognition of their experience of mental health problems and the value they bring

Levels of InvovlementActivity 317

Think of times when you have power or lack power in your current role

I have power when

I lack power when

Discuss where there may be a tension or conflict relating to power in your relationship with carers and service users

How can you use your power to help others become empowered

Another way of overcoming barriers to promoting service user and carer involvement is linked to ESC 6 minus Identifying peoplersquos needs and strengths which is about acknowledging and building on individualsrsquo strengths and supports in your work This is explored in more detail in Module 5

Involvement at organisational level

Involvement at an organisational level is when people have opportunities to work with others who also use services or support people who use services in for instance an active service usercarer group collective advocacy group publicpatient involvement group service management or planning group These forums give people an opportunity to speak up about concerns evaluate services suggest improvements and decide on action If involvement is effective changes will result

Example - Involvement at organisational level

The complaints officer of a general hospital realises that the hospital has received a number of complaints recently regarding the care of people with dementia in general wards She raises it at her senior management meeting where the senior nurse suggests that a group of staff from across the service former patients who have dementia and their carers be brought together to develop a set of standards for care of people with dementia in the hospital The nurse manager suggests that a person from Alzheimerrsquos Scotland be invited to facilitate the group She also identifies a senior charge nurse in the medical unit who has a particular interest in the care of older people generally and people with dementia in particular who she will approach with a view to adopting a ldquodementia championrdquo role across the hospital advising colleagues liaising with patients and carers and driving good practice

Levels of InvolvementMost NHS organisations have specific policies on involving people in the design and review of health services These are based on statutory requirements and guidance issued by the Scottish Government This includes the creation of Public Partnership Forums (PPFs) [httpwwwclinicalgovernancescotnhsuksection4Partnershipforumsasp] which are based in Community Health (and Care) Partnerships (CH(C)Ps) These forums give people an opportunity to speak up about concerns evaluate services suggest improvements and decide on action If involvement is effective changes will result We also need to remember to show how peoplersquos involvement has made a difference

It is however important that these more formal bodies should not be the only ways of involving people Sometimes it is necessary to go beyond these groups and seek the views and involvement of the wider public and users to ensure true representation

We are going to use another rating system to help us think about ways in which involvement can happen at the wider organisational level

Activity 318

Reflect on your experience in your current role or setting and answer the questions in the grid below

To what extent are service users and carers able to

Always Sometimes Rarely

design and take part in surveysauditsresearch on care issuesjoin self-help service user or campaigning groups which raise issues and are consulted by service providersbecome representatives on management clinical governance or planning groups

take part in learning events for people from across the mental health community

find employment in mental health services

interview and help to appoint staff

be involved in finance policy and activity planning for a service(s)

run services

Levels of InvovlementWhat could you do to influence the areas where this is only occasionally or rarely happening

With whom might you form alliances to bring about change

What do you think are going to be the benefits of this involvement

The Scottish Health Council (SHC) [httpwwwscottishhealthcouncilorg] was established in April 2005 to promote ldquopatient focus and public involvementrdquo in NHSScotland An aim of SHC is to support achievement of a ldquomutual NHSrdquo in which the NHS works in partnership with patients carers and the public to take account of peoplersquos views

One of SHCrsquos functions is ldquoparticipation reviewrdquo which focuses primarily on two areas of participation

bull how health boards are involving people in the general design of services

bull how they are consulting them in relation to major service change

The SHC also developed an NHSScotland participation standard [httpwwwscottishhealthcouncilorgshcpfpistandardParticipation_Standard] The standard covers three aspects of participation

bull patient focus minus care and services are provided in partnership with patients treating individuals with dignity and respect and are responsive to age disability gender race religion or belief sexual orientation and transgender status

bull public involvement minus there is supported and effective involvement of people in service planning and improvement

bull governance minus robust corporate governance arrangements are in place for involving people founded on mutuality equality diversity and human rights principles

If you work in the NHS you may want to find out about how your organisation is responding to the requirements of the participation standard Find out who leads for patient focus and public involvement in your organisation who will be able to provide this information

Services are increasingly recognising the strengths and contributions of people who have experienced health problems In mental health services for example peer support specialists are individuals who are employed in recognition of their experience of mental health problems and the value they bring

Levels of InvolvementMost NHS organisations have specific policies on involving people in the design and review of health services These are based on statutory requirements and guidance issued by the Scottish Government This includes the creation of Public Partnership Forums (PPFs) [httpwwwclinicalgovernancescotnhsuksection4Partnershipforumsasp] which are based in Community Health (and Care) Partnerships (CH(C)Ps) These forums give people an opportunity to speak up about concerns evaluate services suggest improvements and decide on action If involvement is effective changes will result We also need to remember to show how peoplersquos involvement has made a difference

It is however important that these more formal bodies should not be the only ways of involving people Sometimes it is necessary to go beyond these groups and seek the views and involvement of the wider public and users to ensure true representation

We are going to use another rating system to help us think about ways in which involvement can happen at the wider organisational level

Activity 318

Reflect on your experience in your current role or setting and answer the questions in the grid below

To what extent are service users and carers able to

Always Sometimes Rarely

design and take part in surveysauditsresearch on care issuesjoin self-help service user or campaigning groups which raise issues and are consulted by service providersbecome representatives on management clinical governance or planning groups

take part in learning events for people from across the mental health community

find employment in mental health services

interview and help to appoint staff

be involved in finance policy and activity planning for a service(s)

run services

Levels of InvovlementWhat could you do to influence the areas where this is only occasionally or rarely happening

With whom might you form alliances to bring about change

What do you think are going to be the benefits of this involvement

The Scottish Health Council (SHC) [httpwwwscottishhealthcouncilorg] was established in April 2005 to promote ldquopatient focus and public involvementrdquo in NHSScotland An aim of SHC is to support achievement of a ldquomutual NHSrdquo in which the NHS works in partnership with patients carers and the public to take account of peoplersquos views

One of SHCrsquos functions is ldquoparticipation reviewrdquo which focuses primarily on two areas of participation

bull how health boards are involving people in the general design of services

bull how they are consulting them in relation to major service change

The SHC also developed an NHSScotland participation standard [httpwwwscottishhealthcouncilorgshcpfpistandardParticipation_Standard] The standard covers three aspects of participation

bull patient focus minus care and services are provided in partnership with patients treating individuals with dignity and respect and are responsive to age disability gender race religion or belief sexual orientation and transgender status

bull public involvement minus there is supported and effective involvement of people in service planning and improvement

bull governance minus robust corporate governance arrangements are in place for involving people founded on mutuality equality diversity and human rights principles

If you work in the NHS you may want to find out about how your organisation is responding to the requirements of the participation standard Find out who leads for patient focus and public involvement in your organisation who will be able to provide this information

Services are increasingly recognising the strengths and contributions of people who have experienced health problems In mental health services for example peer support specialists are individuals who are employed in recognition of their experience of mental health problems and the value they bring

Levels of InvovlementWhat could you do to influence the areas where this is only occasionally or rarely happening

With whom might you form alliances to bring about change

What do you think are going to be the benefits of this involvement

The Scottish Health Council (SHC) [httpwwwscottishhealthcouncilorg] was established in April 2005 to promote ldquopatient focus and public involvementrdquo in NHSScotland An aim of SHC is to support achievement of a ldquomutual NHSrdquo in which the NHS works in partnership with patients carers and the public to take account of peoplersquos views

One of SHCrsquos functions is ldquoparticipation reviewrdquo which focuses primarily on two areas of participation

bull how health boards are involving people in the general design of services

bull how they are consulting them in relation to major service change

The SHC also developed an NHSScotland participation standard [httpwwwscottishhealthcouncilorgshcpfpistandardParticipation_Standard] The standard covers three aspects of participation

bull patient focus minus care and services are provided in partnership with patients treating individuals with dignity and respect and are responsive to age disability gender race religion or belief sexual orientation and transgender status

bull public involvement minus there is supported and effective involvement of people in service planning and improvement

bull governance minus robust corporate governance arrangements are in place for involving people founded on mutuality equality diversity and human rights principles

If you work in the NHS you may want to find out about how your organisation is responding to the requirements of the participation standard Find out who leads for patient focus and public involvement in your organisation who will be able to provide this information

Services are increasingly recognising the strengths and contributions of people who have experienced health problems In mental health services for example peer support specialists are individuals who are employed in recognition of their experience of mental health problems and the value they bring

Levels of Involvementin providing care and support to others (peers) in recovery Their work is based on developing mutual empathic and empowering relationships in which peer and peer worker can share learning and recovery The workers are trained salaried supervised and supported members of care teams who perform a range of functions

The SRN helped in developing Scotlandrsquos first peer support service and was also involved in the pilot programme to employ peer support workers in a number of health board areas across Scotland This pilot programme was part of the Scottish Governmentrsquos plans for mental health service improvement SRN has been working with the Scottish Qualifications Authority to develop and share a newly accredited training award for future peer support workers

Activity 319

Read this journal article about peer support in Scotland which you can download from the SRN website [httpwwwscottishrecoverynetDownload-document306-Developing-peer-support-worker-roles-reflecting-on-experiences-in-Scotlandhtml]

What positive impact do you think peer support workers might have in relation to service user involvement in your service

Involvement at strategic level

This level of involvement is about influencing policy strategy and planning through for example local planning committees or national forums It is important to ensure that when people are invited to be involved steps are taken to ensure their involvement is meaningful rather than tokenistic

Activity 320

Imagine you have been invited to represent your organisation on a strategic planning group with senior civil servants from the Scottish Government and chief executives from health boards and local authorities

What sort of support and preparation would you need to be meaningfully involved in this group

Compare your answers with the good practice points which follow

Good practice in strategic involvementExamples of good practice in strategic involvement show that time and effort spent in facilitating individualsrsquo and groupsrsquo active participation results in better-informed contributions and stronger partnerships

For example networks or groups looking for

Levels of Involvementstrategic involvement should work with individuals who take part in strategic planning to

bull support organisations that help individuals to be involved

bull set up meetings at convenient times and locations

bull acknowledge individualsrsquo backgrounds and circumstances including diversity of age culture race disability gender sexuality and spirituality and take these into account when asking for involvement

bull find out about training and development opportunities that will facilitate greater involvement

bull be aware of and use person-centred approaches to commissioning services

bull provide information in a timely and accessible manner

bull set out tasks clearly bull run meetings and events in ways that promote

participationbull allow enough time in meetings for debate and

consultationbull involve service users and carers in decision-

making processes from the beginning and make it clear how where and when decisions are made

bull have a jointly agreed approach to involving service users and carers which covers practical aspects such as payment and expenses and difficult points such as ways of resolving differences of opinion

In Scotland the Community Engagement

Standards [httpwwwscdcorguknational-standards-community-engagement] are relevant in this area Among the ten standards there is guidance on issues such as involvement support planning and methods

Examples of strategic involvement

Examples of strategic involvement exist throughout the country in the work of service user groups The Scottish Health Council has a database of good practice examples [httpwwwscottishhealthcouncilorgevolving_practiceevolving_practiceaspx]

A national mental health service user organisation called Voices Of eXperience (VOX) [wwwvoxscotlandorguk] was set up by service users in Scotland in 2006 with the aim of strengthening the collective voice and influence of people who experience or have experienced mental health problems VOX has drawn together a statement of good practice in service user involvement [httpwwwvoxscotlandorgukPublications]

The Scottish Dementia Working Group (SDWG) [httpwwwsdwgorguk] is an independent group set up and run by people with dementia The purpose of the working group is to campaign to improve services for and improve attitudes towards people with dementia One of their key objectives is to influence public policies that impact on the lives of people with dementia and their families They were a major influence in dementia becoming a national priority and are represented on the Scottish Governmentrsquos Dementia Forum which drives forward and monitors progress on key national initiatives relating to dementia They played an important role in campaigning for and determining the priorities outlined

Levels of Involvement

Activity 321

Can you name any local service user organisationspublic partnership forums which work with people who experience health or social problems in your particular area of practice

Give examples from your own experience of the work these organisations do

Examples of Strategic Involvement

in Scotlandrsquos National Dementia Strategy [httpwwwscotlandgovukPublications201009101517510] launched in June 2010

The National Childbirth Trust (NCT) [httpwwwnctorguk ] has a long tradition of user involvement and believe that services and information for parents should be responsive to parentsrsquo needs and preferences should work towards promoting public health and well-being and should help to provide a positive start in life for children

The NCTrsquos parent-centred approach is particularly helpful in engaging hard-to-reach groups It has developed a wide range of skills through its partnerships with local organisations and courses tailored to parentsrsquo needs including black and minority ethnic families refugees and asylum seekers and young parents

The Scottish Consortium for Learning Disabilityrsquos (SCLD) [httpwwwscldorgukhome] mission is to work in partnership with people with learning disabilities of all ages and family carers to challenge discrimination and to develop and share good practice SCLD facilitates a user and carer forum and is also leading a project on citizen leadership Citizen leadership is about a change of relationship between people who use services and people who provide them In this new relationship people as citizens take on shared responsibility for making sure services meet their needs To find out more go to httpwwwscldorgukscld-projectscitizen-leadership

With funding from the Scottish Government the Long Term Conditions Alliance Scotland (LTCAS) set up

the Self-management Fund for Scotland This was made available to voluntary and community groups ldquoto stimulate change across Scotland so that people with long-term conditions have access to support they need to successfully manage their livesrdquo As a result of the fund people living with LTCs have been involved in the design delivery and evaluation of a wide range of projects Many of these included partnerships across sectors to support self-management For more information go to httpwwwltcasorgukwhat-we-doself-managementself-management-fund

Levels of InvolvementChoose one group you are not already in touch with who may be useful to the people with whom you work Make a list of what yoursquod like to find out from them (this might include their aims and objectives) and get in touch as soon as possible to make a link and ask for information that you can pass on

What is the name of your local carer organisation or collective advocacy organisation(s) which work with carers who support someone with health problems

Activity 322

This is a chance to think about the skills and opportunities you and your service already have and those yoursquod like to acquire to facilitate involving service users and their carers at the different levels we have discussed in this module (individual organisational and strategic)

Describe the skills and opportunities that help you and your service to promote service user and carer involvement

What areas could be developed further

Set a small achievable goal that will support developments

Levels of Influence and Evaluating InvolvementPeoplersquos involvement will have varying levels of influence

Activity 323

What factors influence involvement at individual team and organisational level

One way of analysing existing involvement in your area with a view to increasing service usersrsquo and carersrsquo influence is to consider where current examples of involvement sit on a continuum of involvement and participation Goss and Millar4 developed a continuum to promote the development of service user and carer-centred community care It works towards the goal of equal partnership Figure 31 uses this continuum as a basis to show variations in involvement in two aspects of developing services and service-providing organisations ndash gathering information and defining need and analysingconsidering information and making decisions

Figure 31 Continuums to promote equal partnership

Increasing participation

1 Gathering information and defining need

1 No involvement

2 Information collected

3 Start of communication

4 Listening and responding

5 Partnership

Staff define issuesStaff lsquospeak forrsquo users and carers No information gathered from users and carers

Information on peoplersquos needs collected remotely eg by survey but staff define issues

Limited information collected from talking with users and carers Staff define issues

Wider ranging open consultation on issues and problems

All parties pool and share information

Together staff and users and carers define issues

Levels of Influence and Evaluating Involvement2 Analysingconsidering information and making decisions

Increasing participation

1 No involvement

2 Information collected

3 Start of communication

4 Listening and responding

5 Partnership

Staff develop solutions

Staff use information collected to develop solutions

Staff develop options and consult with users collate feedback and decide on solutions

Users and carers involved in analysing problems and discussing options

Users and carers and staff work together to analyse problems discuss options and decide and implement appropriate solutions

Activity 324

Look at the continuums in Figure 1 and discuss with colleagues andor fellow learners which level (1minus5) the example(s) you gave in Activity 33 correspond to and why

Discuss and make notes on what needs to be done to improve service user and carer involvement in the examples you have given

Levels of Influence and Evaluating InvolvementTo investigate service user involvement at organisational level talk to your local service user and carer groups Patient Focus and Public Involvement (PFPI) representatives and service managers

What methods of evaluation at individual team and organisational levels do you think would be useful for the areas in which you work

Consider how you might be able to use these methods in partnership with colleagues and service users

Hopefully this module has given you time to reflect on how your own and your organisationrsquos current practices promote service user and carer involvement and how they can be improved to strengthen involvement

It will take time to put into effect the learning you have gained You should regularly review progress towards the goals of increasing partnership working and improving experiences for service users and their carers

We have to keep in mind that while service user and carer organisations and individuals in many cases want to move towards a position of partnership some people may not want this They might prefer to be consulted but not included in decision-making (Level 3 of influence) The implication is that people must be given choice about the extent of their involvement

Activity 325

The impact of service user and carer involvement on the experience of service users and carers can be evaluated in a number of different ways

How do you and your team identify that service users are involved

How do you and your team know what difference service user involvement makes

Levels of Influence and Evaluating InvolvementActivity 326

Partnership is a theme across the 10 ESCs minus there are strong links between developing the capabilities and strengthening service user and carer involvement

Concentrating on the level of involvement your work most closely relates to (individual organisational or strategic) which capabilities when applied to your work would do most to promote service user and carer involvement

ConclusionThis module has considered the link between the 10 ESCs and involvement Involving people in care requires the development of partnerships on individual organisational and strategic levels Involving people requires that we focus not only on individuals using services but also on carers families social networks and communities It also requires us to reflect on power and on how our actions systems and professional and organisational cultures may discourage or support empowerment

We explored a number of issues in involvement including person-centred support and planning capacity and informed consent confidentiality and peer networks

We hope that you will continue to think about partnership and service user and carer involvement as you work through the rest of the ESC learning resource Here are some questions that will help you within your own role

bull What are the barriers and opportunities to involving service users in their own treatment

bull What are the barriers and opportunities to involving carers as partners in the treatment and care of the person they support

bull What practical ways could be employed to involve service users and carers in local planning and consultation

bull How can you take this forward in your work What support do you require to take it forward

Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

1. Button 33
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Levels of Influence and Evaluating InvolvementPeoplersquos involvement will have varying levels of influence

Activity 323

What factors influence involvement at individual team and organisational level

One way of analysing existing involvement in your area with a view to increasing service usersrsquo and carersrsquo influence is to consider where current examples of involvement sit on a continuum of involvement and participation Goss and Millar4 developed a continuum to promote the development of service user and carer-centred community care It works towards the goal of equal partnership Figure 31 uses this continuum as a basis to show variations in involvement in two aspects of developing services and service-providing organisations ndash gathering information and defining need and analysingconsidering information and making decisions

Figure 31 Continuums to promote equal partnership

Increasing participation

1 Gathering information and defining need

1 No involvement

2 Information collected

3 Start of communication

4 Listening and responding

5 Partnership

Staff define issuesStaff lsquospeak forrsquo users and carers No information gathered from users and carers

Information on peoplersquos needs collected remotely eg by survey but staff define issues

Limited information collected from talking with users and carers Staff define issues

Wider ranging open consultation on issues and problems

All parties pool and share information

Together staff and users and carers define issues

Levels of Influence and Evaluating Involvement2 Analysingconsidering information and making decisions

Increasing participation

1 No involvement

2 Information collected

3 Start of communication

4 Listening and responding

5 Partnership

Staff develop solutions

Staff use information collected to develop solutions

Staff develop options and consult with users collate feedback and decide on solutions

Users and carers involved in analysing problems and discussing options

Users and carers and staff work together to analyse problems discuss options and decide and implement appropriate solutions

Activity 324

Look at the continuums in Figure 1 and discuss with colleagues andor fellow learners which level (1minus5) the example(s) you gave in Activity 33 correspond to and why

Discuss and make notes on what needs to be done to improve service user and carer involvement in the examples you have given

Levels of Influence and Evaluating InvolvementTo investigate service user involvement at organisational level talk to your local service user and carer groups Patient Focus and Public Involvement (PFPI) representatives and service managers

What methods of evaluation at individual team and organisational levels do you think would be useful for the areas in which you work

Consider how you might be able to use these methods in partnership with colleagues and service users

Hopefully this module has given you time to reflect on how your own and your organisationrsquos current practices promote service user and carer involvement and how they can be improved to strengthen involvement

It will take time to put into effect the learning you have gained You should regularly review progress towards the goals of increasing partnership working and improving experiences for service users and their carers

We have to keep in mind that while service user and carer organisations and individuals in many cases want to move towards a position of partnership some people may not want this They might prefer to be consulted but not included in decision-making (Level 3 of influence) The implication is that people must be given choice about the extent of their involvement

Activity 325

The impact of service user and carer involvement on the experience of service users and carers can be evaluated in a number of different ways

How do you and your team identify that service users are involved

How do you and your team know what difference service user involvement makes

Levels of Influence and Evaluating InvolvementActivity 326

Partnership is a theme across the 10 ESCs minus there are strong links between developing the capabilities and strengthening service user and carer involvement

Concentrating on the level of involvement your work most closely relates to (individual organisational or strategic) which capabilities when applied to your work would do most to promote service user and carer involvement

ConclusionThis module has considered the link between the 10 ESCs and involvement Involving people in care requires the development of partnerships on individual organisational and strategic levels Involving people requires that we focus not only on individuals using services but also on carers families social networks and communities It also requires us to reflect on power and on how our actions systems and professional and organisational cultures may discourage or support empowerment

We explored a number of issues in involvement including person-centred support and planning capacity and informed consent confidentiality and peer networks

We hope that you will continue to think about partnership and service user and carer involvement as you work through the rest of the ESC learning resource Here are some questions that will help you within your own role

bull What are the barriers and opportunities to involving service users in their own treatment

bull What are the barriers and opportunities to involving carers as partners in the treatment and care of the person they support

bull What practical ways could be employed to involve service users and carers in local planning and consultation

bull How can you take this forward in your work What support do you require to take it forward

Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

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Levels of Influence and Evaluating Involvement2 Analysingconsidering information and making decisions

Increasing participation

1 No involvement

2 Information collected

3 Start of communication

4 Listening and responding

5 Partnership

Staff develop solutions

Staff use information collected to develop solutions

Staff develop options and consult with users collate feedback and decide on solutions

Users and carers involved in analysing problems and discussing options

Users and carers and staff work together to analyse problems discuss options and decide and implement appropriate solutions

Activity 324

Look at the continuums in Figure 1 and discuss with colleagues andor fellow learners which level (1minus5) the example(s) you gave in Activity 33 correspond to and why

Discuss and make notes on what needs to be done to improve service user and carer involvement in the examples you have given

Levels of Influence and Evaluating InvolvementTo investigate service user involvement at organisational level talk to your local service user and carer groups Patient Focus and Public Involvement (PFPI) representatives and service managers

What methods of evaluation at individual team and organisational levels do you think would be useful for the areas in which you work

Consider how you might be able to use these methods in partnership with colleagues and service users

Hopefully this module has given you time to reflect on how your own and your organisationrsquos current practices promote service user and carer involvement and how they can be improved to strengthen involvement

It will take time to put into effect the learning you have gained You should regularly review progress towards the goals of increasing partnership working and improving experiences for service users and their carers

We have to keep in mind that while service user and carer organisations and individuals in many cases want to move towards a position of partnership some people may not want this They might prefer to be consulted but not included in decision-making (Level 3 of influence) The implication is that people must be given choice about the extent of their involvement

Activity 325

The impact of service user and carer involvement on the experience of service users and carers can be evaluated in a number of different ways

How do you and your team identify that service users are involved

How do you and your team know what difference service user involvement makes

Levels of Influence and Evaluating InvolvementActivity 326

Partnership is a theme across the 10 ESCs minus there are strong links between developing the capabilities and strengthening service user and carer involvement

Concentrating on the level of involvement your work most closely relates to (individual organisational or strategic) which capabilities when applied to your work would do most to promote service user and carer involvement

ConclusionThis module has considered the link between the 10 ESCs and involvement Involving people in care requires the development of partnerships on individual organisational and strategic levels Involving people requires that we focus not only on individuals using services but also on carers families social networks and communities It also requires us to reflect on power and on how our actions systems and professional and organisational cultures may discourage or support empowerment

We explored a number of issues in involvement including person-centred support and planning capacity and informed consent confidentiality and peer networks

We hope that you will continue to think about partnership and service user and carer involvement as you work through the rest of the ESC learning resource Here are some questions that will help you within your own role

bull What are the barriers and opportunities to involving service users in their own treatment

bull What are the barriers and opportunities to involving carers as partners in the treatment and care of the person they support

bull What practical ways could be employed to involve service users and carers in local planning and consultation

bull How can you take this forward in your work What support do you require to take it forward

Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

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159. Text268
160. Text269

Levels of Influence and Evaluating InvolvementTo investigate service user involvement at organisational level talk to your local service user and carer groups Patient Focus and Public Involvement (PFPI) representatives and service managers

What methods of evaluation at individual team and organisational levels do you think would be useful for the areas in which you work

Consider how you might be able to use these methods in partnership with colleagues and service users

Hopefully this module has given you time to reflect on how your own and your organisationrsquos current practices promote service user and carer involvement and how they can be improved to strengthen involvement

It will take time to put into effect the learning you have gained You should regularly review progress towards the goals of increasing partnership working and improving experiences for service users and their carers

We have to keep in mind that while service user and carer organisations and individuals in many cases want to move towards a position of partnership some people may not want this They might prefer to be consulted but not included in decision-making (Level 3 of influence) The implication is that people must be given choice about the extent of their involvement

Activity 325

The impact of service user and carer involvement on the experience of service users and carers can be evaluated in a number of different ways

How do you and your team identify that service users are involved

How do you and your team know what difference service user involvement makes

Levels of Influence and Evaluating InvolvementActivity 326

Partnership is a theme across the 10 ESCs minus there are strong links between developing the capabilities and strengthening service user and carer involvement

Concentrating on the level of involvement your work most closely relates to (individual organisational or strategic) which capabilities when applied to your work would do most to promote service user and carer involvement

ConclusionThis module has considered the link between the 10 ESCs and involvement Involving people in care requires the development of partnerships on individual organisational and strategic levels Involving people requires that we focus not only on individuals using services but also on carers families social networks and communities It also requires us to reflect on power and on how our actions systems and professional and organisational cultures may discourage or support empowerment

We explored a number of issues in involvement including person-centred support and planning capacity and informed consent confidentiality and peer networks

We hope that you will continue to think about partnership and service user and carer involvement as you work through the rest of the ESC learning resource Here are some questions that will help you within your own role

bull What are the barriers and opportunities to involving service users in their own treatment

bull What are the barriers and opportunities to involving carers as partners in the treatment and care of the person they support

bull What practical ways could be employed to involve service users and carers in local planning and consultation

bull How can you take this forward in your work What support do you require to take it forward

Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

1. Button 33
2. Button 174
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4. Button 1047
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7. Button 1050
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158. Text267
159. Text268
160. Text269

Levels of Influence and Evaluating InvolvementActivity 326

Partnership is a theme across the 10 ESCs minus there are strong links between developing the capabilities and strengthening service user and carer involvement

Concentrating on the level of involvement your work most closely relates to (individual organisational or strategic) which capabilities when applied to your work would do most to promote service user and carer involvement

ConclusionThis module has considered the link between the 10 ESCs and involvement Involving people in care requires the development of partnerships on individual organisational and strategic levels Involving people requires that we focus not only on individuals using services but also on carers families social networks and communities It also requires us to reflect on power and on how our actions systems and professional and organisational cultures may discourage or support empowerment

We explored a number of issues in involvement including person-centred support and planning capacity and informed consent confidentiality and peer networks

We hope that you will continue to think about partnership and service user and carer involvement as you work through the rest of the ESC learning resource Here are some questions that will help you within your own role

bull What are the barriers and opportunities to involving service users in their own treatment

bull What are the barriers and opportunities to involving carers as partners in the treatment and care of the person they support

bull What practical ways could be employed to involve service users and carers in local planning and consultation

bull How can you take this forward in your work What support do you require to take it forward

Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

1. Button 33
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153. Text262
154. Text263
155. Text264
156. Text265
157. Text266
158. Text267
159. Text268
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ConclusionThis module has considered the link between the 10 ESCs and involvement Involving people in care requires the development of partnerships on individual organisational and strategic levels Involving people requires that we focus not only on individuals using services but also on carers families social networks and communities It also requires us to reflect on power and on how our actions systems and professional and organisational cultures may discourage or support empowerment

We explored a number of issues in involvement including person-centred support and planning capacity and informed consent confidentiality and peer networks

We hope that you will continue to think about partnership and service user and carer involvement as you work through the rest of the ESC learning resource Here are some questions that will help you within your own role

bull What are the barriers and opportunities to involving service users in their own treatment

bull What are the barriers and opportunities to involving carers as partners in the treatment and care of the person they support

bull What practical ways could be employed to involve service users and carers in local planning and consultation

bull How can you take this forward in your work What support do you require to take it forward

Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

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Action into PracticeWhat could you do to make your work more person centred

From your list and some of the points made below choose two things that you will take forward to make your work more person-centred

Some ideas for making your work more person-centred

bull Explore with your team what it would mean to become more person-centred

bull Compare what you know about person-centred approaches with the existing practices of assessment and planning in your service Could they be changed to be more person centred How could you implement these changes

bull Learn more about the local community and what opportunities there are to develop relationships

bull Find a service or person experienced in person-centred planning and find out more from them on how you could become more person centred

bull Identify all the ways decisions are made within your service and look at how people who you provide a service for could be more involved in these processes

bull Which existing process(es) could you use to practice developing your skills in service user and carer involvement

How can you (or your team or organisation) support and develop opportunities for shared training and learning with service users and carers and with service users and carer organistions

Make a plan to identify two things to improve service user involvement in the area in which you work

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