Carers Legislation - Analysis of Consultation Responses

7 Carer Involvement

In summary,

Areas outwith the scope of integration

• All respondents answering this question agreed that there should be carer involvement in the planning, shaping and delivery of services for the people they care for and support for carers in areas outwith the scope of integration, with a number of respondents commenting that carers are in the best position to know what services are required.
• Some respondents commented on the need to ensure that carers are treated as equal partners throughout the process, and involved in a meaningful way.
• There were some comments that different approaches will be needed in involving the views of carers. For example, age-appropriate approaches will need to be utilised for young carers.
• Some respondents also commented on the need to consider the views of the cared-for person and that coproduction will be an important element.
• The inclusion of non-integrated bodies in this provision was welcomed by some respondents.
• A significant number of respondents commented that this proposal has links to other legislation or strategies.
• Some respondents noted that they already involve carers in the planning, shaping and delivery of services.

Involvement of carers' organisations

• Many respondents noted the importance of involving carer organisations in the planning, shaping and delivery of services and support falling outwith the scope of integration.
• A significant number of respondents noted the need to include a wide range of third sector organisations, not simply those who represent carers.
• There were some concerns that non-engaged carers might slip through the net.
• Some respondents noted that they already involve carers in the planning, shaping and delivery of services.
• A small number of respondents felt there is no need to have specific legislation as there is already sufficient provision for this.

Carer and young carer involvement in care planning

• Almost all respondents supported the establishment of a principle about carer and young carer involvement in care planning for service users (subject to consent) and support for themselves in areas not covered in existing legislation.
• Many respondents commented that carers have valuable knowledge and experience or that they should be treated as an equal partner in the planning, shaping and delivery of care. Again, there were comments of the need for age- appropriate involvement for young carers.
• While a small number of respondents commented that this principle is consistent with other policies and legislation, there were a small number of concerns that this principle might conflict with some other legislation for example, the Mental Health (Scotland) Bill.
• There were some requests for the provision of support; including good practice guidance, independent advocacy and training.
• There were some requests for partnership working in order to provide the best quality of support.

7.1 This chapter of the consultation looked at carer involvement in planning, shaping and delivery of services and support, and use of carer expertise and knowledge by professionals.

7.2 The Scottish Government is proposing to make provision for carer involvement in the planning, shaping and delivery of services for the people they care for and support for carers in areas outwith the scope of integration. They are also proposing to make provision for involvement by carers' organisations in the planning, shaping and delivery of services and support falling outwith the scope of integration.

AREAS OUTWITH THE SCOPE OF INTEGRATION

7.3 The first question in relation to these issues asked:

Question 16: Should there be carer involvement in the planning, shaping and delivery of services for the people they care for and support for carers in areas outwith the scope of integration?

Table 7.1: Question 16

Respondent group	Yes	No	Other	Nil response
Individuals (32)	27	-	-	5
Carer/ User support (81)	72	-	-	9
Local authority (24)	23	-	-	1
Health (13)	12	-	-	1
CHCP (6)	5	-	-	1
Public body (3)	2	-	-	1
Professional body (3)	1	-	-	2
Representative body (3)	2	-	-	1
TOTAL (165)	144	-	-	21

7.4 All of those who replied said yes (144 respondents). This was across all respondent sub-groups. One hundred and twenty-four respondents provided further commentary to support their answer to this question.

7.5 Around half of these respondents commented that it is important to involve the views of carers or that they welcomed any moves to involve carers in the planning, shaping and delivery of services. A small number of these respondents (mostly local authorities and carer/ user support organisations) referred specifically to the need for carers to be involved as equal partners in the process.

7.6 A small number of respondents, mostly carer/ user support organisations, also noted the need to ensure that inclusion of carers is not just tokenistic but that they are involved in a meaningful way. A small number of respondents suggested inclusion of representatives from carer organisations to allow for representative and collective input, rather than involving carers with no representative body to provide them with support.

7.7 There were also a number of comments that carers should be involved in every stage of the planning, shaping and delivery of services. Some respondents noted specifically that a carer is in the best position to know what services are required because they know the cared-for person better than the professionals; as such, their knowledge and expertise is seen to be an invaluable element of service delivery. A small number of references were made to carers within specific communities such as BME, and the need to include these in planning, shaping and delivery of services. As noted by one professional body:

"We agree with carer involvement in planning, designing and delivering services. The proposal aligns with both our own view on the importance of involvement in improving services and the broad direction of travel across other policy areas and national strategies. For example, the Scottish Government's Mental Health Strategy: 2012 - 2015 includes a commitment to "increase the involvement of families and carers in policy development and service delivery". Our view is that meaningful involvement appropriately recognises and values the unique perspective and expertise of carers and supports effective partnership working."

7.8 The same organisation also went onto comment on the cared-for person and the proposal to include non-integrated bodies in this provision.

"This needs to be balanced to reflect the voice, choice, rights and needs of both the person using the service and the carer. We especially welcome the proposal to include non-integrated bodies in this provision. This should provide greater assurance around the provision of support for young people whose services will not necessarily be included in integrated bodies in all areas of the country."

7.9 A small number of respondents referred to the need for the provision of training for health and social care professionals in order that they know how to involve carers or in order that they can deliver the services needed by carers to fulfil their caring role.

7.10 The integration agenda was referred to by a number of respondents - again, mostly carer/ user support organisations - who welcomed the proposal to include non-integrated bodies in this provision.

7.11 While most respondents simply referred to 'carers' in their responses at this question, a relatively small number referred specifically to young carers and noted that they should have the opportunity to become involved in shaping services in their community. That said, one carer/ user support organisation commented that age-appropriate approaches will need to be utilised; another noted that involvement needs to be guided by the young carers age, their stage of development and their understanding of their caring role.

7.12 A significant number of respondents referred to links this proposal has to other legislation or strategies and those mentioned included:

• National Person Centred Health & Care Programme.
• Equal Partners in Care - Core Principles for Working with Carers and Young Carers (NHS).
• Carers Strategy.
• EPiC core principles.
• Standards for best practice for engaging carers (Coalition of Carers).
• Recognised best practice by Christie Commission.
• Equal and Expert: 3 best practice standards for carer engagement.
• Patient Rights (Scotland) Act 2011.
• Government guidance.
• Government's Mental Health Strategy 2012-2015.
• Public Bodies (Joint Working) Act.
• Models of Community Planning.
• UNCRC.
• SDS and the principles of person-centred care.
• Participation Scotland.

7.13 One representative body queried the need for additional legislation in this area as local authorities already have duties in relation to involving individuals and communities in the planning, shaping and delivery of services. They also noted that when the Public Bodies (Joint Working) (Scotland) Act comes into force in 2015, it will place more duties on local authorities in the planning and design of services.

7.14 One individual also felt that there was a conflict of interest between the proposed carers legislation and the Mental Health (Care and Treatment) (Scotland) Act 2003.

7.15 Finally, in response to this question, a number of respondents - primarily within local authorities and health boards - commented that they already involve carers in the planning, shaping and delivery of adult services; for example, having representation on working groups. One of these respondents - a local authority - was concerned that these proposals might duplicate arrangements already in place.

INVOLVEMENT OF CARERS' ORGANISATIONS

7.16 The next question focused on the possible involvement of carers' organisations and asked:

Question 17: Should we make provision for the involvement of carers' organisations in the planning, shaping and delivery of services and support falling outwith the scope of integration?

Table 7.2: Question 17

Respondent group	Yes	No	Other	Nil response
Individuals (32)	27	-	-	5
Carer/ User support (81)	57	-	-	24
Local authority (24)	19	4	-	1
Health (13)	10	1	-	2
CHCP (6)	4	1	-	1
Public body (3)	1	-	-	2
Professional body (3)	1	-	-	2
Representative body (3)	2	-	-	1
TOTAL (165)	121	6	-	38

7.17 As shown in the table above, 121 respondents said yes while six, mostly local authority respondents, said no. Ninety-five respondents commented on this question; many of whom reiterated points made to Question 16. Many of these responses noted the important role for carers' organisations to play in the planning, shaping and delivery of services and support falling outwith the scope of integration. For example, that they bring a good understanding of the needs of carers or that they have invaluable knowledge and experience in supporting carers and understand issues of relevance.

7.18 However, a significant number of respondents, mainly from carer/ user support organisations noted the need to include a wide range of third sector organisations, and not just those who represent carers. A typical response to this question was illustrated by a carer/ user support organisation who commented,

"Carers' organisations, and indeed those organisations who work with people who are cared-for (such as disability organisations) have a wealth of knowledge and a 'closeness to the customer' that provides an invaluable resource to service planning as well as the experience and skill to support individual carers in effectively participating."

7.19 A small number of respondents commented on the need to include carers in the planning, shaping and delivery of services; with one carer/ user organisation noting the need for co-production to apply. In connection with the involvement of carers themselves, there was a cautionary note from a very small number of respondents that not all carer organisations will be engaged with all carers and that these non-engaged carers should not be allowed to slip through the net.

7.20 A small number of respondents noted the need for involvement to be meaningful and sustained and not simply tokenistic.

7.21 As at the previous question, a number of respondents noted that they are already involving carer organisations in planning, shaping and service delivery.

7.22 A small number of respondents felt there is no need to have specific legislation to ensure the involvement of carer organisations as there is already sufficient provision for this. For example, under the Public Bodies (Joint Working) (Scotland) Act or under the Children and Young People Act.

7.23 A number of respondents commented on the links between the proposals here and EPiC principles, SDS or person-centred planning.

7.24 One local authority was concerned that there could be a conflict of interest if a carer organisation is also a campaigning organisation.

CARER AND YOUNG CARER INVOLVEMENT IN CARE PLANNING

7.25 The consultation paper noted that carers are 'equal partners in care'. Under the Social Care (Self-directed Support) (Scotland) Act 2013, carers should be fully involved in the assessment of needs for support and the provision of support for themselves. So, for example, local authorities must collaborate with people in relation to assessment and the provision of support. Existing legislation also provides for local authorities to take account of the views of carers in the assessment of service users, both adults and children before reaching decisions on the services to be provided.

7.26 The Scottish Government is proposing that carers' legislation includes a principle about carer involvement in care planning for service users (subject to consent) and support for themselves in areas not covered in existing legislation. Question 18 asked,

Question 18: Should we establish a principle about carer and young carer involvement in care planning for service users (subject to consent) and support for themselves in areas not covered in existing legislation?

Table 7.3: Question 18

Respondent group	Yes	No	Other	Nil response
Individuals (32)	25	-	-	7
Carer/ User support (81)	56	-	-	25
Local authority (24)	20	1	1	2
Health (13)	9	-	-	4
CHCP (6)	5	1	-	-
Public body (3)	2	-	-	1
Professional body (3)	1	-	-	2
Representative body (3)	2	-	-	1
TOTAL (165)	120	2	1	42

7.27 The table above shows that almost all respondents providing an answer to this question said yes (120). Only two respondents (one local authority and one CHCP) disagreed with the proposal and one local authority respondent said perhaps. Ninety-four respondents went on to provide additional commentary in support of their response.

7.28 Many of the views provided in response to this question echoed those seen at the two previous questions. Many respondents noted that carers have valuable knowledge and experience or reiterated that carers should be treated as an equal partner in the planning, shaping and delivery of care. A public body and a local authority noted that provision needs to be balanced to reflect the needs of both the carer and the cared-for person. A small number of respondents noted that carers are already involved in care planning for service users in their area.

7.29 A concern noted by a small number of respondents was the potential for conflicting views over what is considered to be good care by the carer and the cared-for person and that the issue of consent has the potential to be problematic in some instances.

7.30 A small number of respondents, across all sub-groups, made specific reference to young carers. The key comment being that young carers need to be involved in a way that is appropriate to their age and development. Two of these respondents referred to the Young Carer's Authorisation Card as an example of what works well. Other comments in relation to young carers included the need to provide support and information to them.

7.31 There was reference from a small number of respondents that this principle is consistent with other policies and legislation. Those mentioned included:

• Getting it Right for Every Child (GIRFEC).
• Self-directed Support (SDS), encompassing person-centred care and coproduction.
• EPiC core principles.
• Equal Partners in Care.
• Public Bodies (Joint Working) Act.
• Human rights.

7.32 That said, a very small number of respondents, all carer/ user support organisations, had concerns that there could be conflicting legislation surrounding this principle. For example, one noted that there could be conflict between Carers' legislation and the Mental Health (Scotland) Bill and the Adults with Incapacity (Scotland) Bill. Another respondent noted that this principle needs to take account of all relevant legislation, citing Millan Principles as an example.

7.33 A number of respondents referred to the provision of support. The range of support mentioned included:

• Good practice guidance to support this and/ or guidance on informed consent.

• Independent advocacy.
• Training for carers and/ or health and social care professionals.

7.34 There were a small number of comments, mostly from local authorities, that existing legislation and guidance is sufficient. One local authority referred to the Social Work (Scotland) Act 1968.

YOUNG CARER INVOLVEMENT

7.35 The consultation paper noted concerns from young carers about their involvement in the planning and delivery of services for cared-for people and for themselves. For example, that they are not always provided with the information they need or that health and social care professionals do not always ask for their views on the care of a parent. In order to ensure that young carers are fully involved, the Scottish Government is proposing that carers' legislation includes a principle about young carer involvement in care planning for service users (subject to consent) and support for themselves. Question 19 asked,

Question 19: What are your views on making provision for young carer involvement in the planning, shaping and delivery of services for cared-for people and support for young carers?

7.36 One hundred and twenty respondents, across all sub-groups, commented on this question. Many of those commenting simply noted their support for making provision for young carer involvement in the planning, shaping and delivery of services for cared-for people and support for young carers. A typical comment was,

"Their involvement and contribution is extremely important and should be included in action plans/ strategy development process etc in relation to services for cared-for people and support for young carers." (local authority)

7.37 Other phrases in support of this included 'this should be integral', 'this is essential', 'young carers should be listened to' or 'the views of young people should be valued'.

7.38 A significant number of respondents, primarily carer/ user support organisations, referred to the need for support, some of whom felt that this would be best achieved in partnership with carer organisations. Some of these respondents noted that young carers need support so they can be fully involved in the planning, shaping and delivery of services.

7.39 There was a recognition from respondents across all sub-groups of the need to recognise that the needs of young carers will differ significantly from those of adult carers. So, for example, a number of respondents noted the need for support to be age-appropriate, with some of these citing the Scottish Young Carers Festival as a good example of age-appropriate support. Other respondents commented that any involvement needs to reflect young carers' rights to a childhood or that it needs to take into account their educational needs or their mental health. There were also some comments on the value of collective and one-to-one advocacy services for young carers.

7.40 A small number of respondents also noted that there is a need to recognise that the needs of young carers may change over time, with one giving the example of the transition from young carer to adult carer.

7.41 There were also comments from a small number of respondents for greater awareness and training for professionals coming into contact with young carers. These included health and social work staff, school staff and other support workers. For example, a carer/ user support organisation noted the need for staff to learn how to involve young carers in a meaningful manner.

7.42 A small number of respondents also cautioned about the need for a balance between the rights of the carer and the rights of the cared-for person.

7.43 A number of respondents noted that they already actively support young carers in the planning, shaping and delivery of services; some of whom provided examples of how they currently engage with young carers. These included references to young carers working groups and young carers fora.

7.44 There were also comments that this provision is consistent with the EPiC (Equal Partners in Care) core principles and SDS. A few other respondents noted the need for this provision to reflect UNCRC principles or the Gold Rules for Engaging Young Carers (produced by Scotland's Commissioner for Children and Young People).

7.45 Finally in response to this question, a small number of respondents raised concerns over the resourcing of this provision.