External Review of the National Carer Organisations (NCOs)

Section 2: The work of the NCO network

2.1 This section deals with the operation of the NCOs as a group (the main focus of the review). The current group is referred to here as the " NCO Network" ^[7] .

The development of the National Carer Organisation "Network"

2.2 It was clear from staff discussions during the review that carer organisations (at a national level, and larger local organisations), had met and worked informally together for many years. In the early period, this was ad hoc, with no regular pattern of meetings. By the mid-2000s, however, a de facto grouping had coalesced around the national carer organisations ^[8] and a decision was taken to develop Terms of Reference. These were agreed in August 2006, and remain current.

2.3 These set out the basis of what was then described as the "Network of National Carer Organisations", stating that it would comprise "representatives from National Carer Organisations or Forums that have a direct focus on carers". Rather than listing membership, examples of such organisations were given, with others able to attend by invitation only, subject to the agreement of all members. The Terms of Reference also set out the basis on which the Network would meet, how chairing would be shared, and how voting (if required) would be managed.

2.4 The purposes of the Network were identified as follows:

• Through joint working, [to] exercise collective leadership for planning, development, monitoring and evaluation of policy and legislation affecting carers.
• To promote effective inter-agency working with the Scottish Executive ^[9] and across all sectors.
• To agree where possible, collective responses to consultation and policy developments, while safeguarding the right of individual organisations to represent the interests of carers and their organisation.

2.5 The Terms of Reference also set out the basis upon which work would be undertaken on behalf of the Network, as being to:

• Ensure that the NCOs are aware they are working in such a capacity and that any involved third party (e.g. Scottish Executive, Ministers, and MSPs) is also aware of the member's role at that time to promote the group's collective view.
• Keep the NCOs informed of the progress and outcome of such activities.
• Wherever possible, ensure that each of the member organisations receive 'equal billing'.

2.6 Although the Terms of Reference document was not "live" (in the sense of being regularly reviewed or updated) there was strong agreement among the NCOs and other stakeholders that it accurately described the current Network. Since 2006, however, the NCOs have sought to clarify the Network's structure and work further.

Visions and outcome paper

2.7 In 2012, the NCO Network agreed a vision and outcomes in the light of the implementation of the National Strategy from 2010. The vision stated:

"It is our shared vision that all Scotland's unpaid carers will feel valued, included and supported as equal partners in the provision of care."

2.8 Consistent with the partnership approach in the National Strategy, the Network agreed to adopt all of the outcomes set out both for adult and young carers. Two additional outcomes for adult carers were offered "to consider". These were to:

• Be better informed about issues linked to their caring role.
• Be more confident in their ability to contribute to and shape local and national policy developments.

2.9 Of most direct relevance to the current review, however, was the articulation of how the NCO Network would work to achieve the vision and outcomes. For adult carers, the Network committed itself to:

• Raise the profile of carers as providers of care and equal partners in care.
• Identify key issues affecting carers and young carers in Scotland, bringing these to the attention of relevant decision makers in local and national government.
• Strengthen carer engagement in the development of local and national policy.
• Strengthen carer engagement in improving service provision at all levels.
• Promote good practice through research, practice exchange and development projects.
• Make and maintain connections between carers, carer-led organisations and national and local decision makers.
• Measure the impact of local and national policy relating to carers; holding those responsible to account where it fails to deliver on implementation.
• Campaign to make life better for carers and young carers.

2.10 For young carers, the Network agreed that carer-led organisations would commit themselves to ^[10] :

• Be more confident in their ability to explore issues, analyse developments and identify key issues confronting carers and young carers in Scotland.
• Be more confident in their ability to contribute to and shape local and national policy developments.
• Benefit from stronger links with key decision makers at a local and national level.
• Be better informed of examples of best practice, which can be replicated in their localities.
• Feel supported in highlighting gaps in the provision of local services, including gaps in the provision of short break services.
• Be more confident in their ability to monitor local and national policy developments and implementation.

2.11 Again, drawing on the National Strategy, the NCO Vision and Outcomes paper indicated that other key partners would:

• Recognise carers as equal partners in care, reflecting this in policy and practice at all levels.
• Have a better understanding of the key issues affecting carers and young carers.
• Have stronger links with carers and carer-led organisations
• Be better informed of examples of best practice in relation to the provision of carer support services.
• Be better informed of gaps in the provision of local services, including gaps in the provision of short break services.
• Be better informed of the impact of local and national health and social care policy for carers and young carers.

NCO development event

2.12 In January 2013, the NCOs held a planning session, led by an external facilitator, to review the operation of the NCO Network and consider its structure. The notes from the meeting ^[11] were agreed subsequently and adopted as the basis of a forward plan. Those who attended suggested that the session was pivotal in the Network's development. Although the output document was left unfinished, and did not appear to have been revisited since 2013, it was referred to regularly in the review as being the basis of recent work.

2.13 The 2012 priorities were reiterated, with an overall priority of "making a difference to carers' lives". It was agreed that the work of the NCO Network should focus on "four pillars": research; policy; engagement; and services. This was viewed as a clearer framework for the work of the Network and its individual members (rather than a significant shift), and was seen to be consistent with the Terms of Reference agreed in 2006, as well as the aims and objectives of individual members. The document set out examples of the work being undertaken by the Network in three of the four "pillars" (with the exception of "services").

2.14 A further outcome of the planning session was an agreement to create two "standing" sub-groups: research; and policy. Terms of Reference for each were agreed subsequently. It was agreed (and remains the case) that those with a specific interest or expertise in an area would be nominated (rather than each organisation having a sub-group member by right). This was seen as consistent with the operating principles, whereby any individual member could act on behalf of the Network (and, by extension, organisations could delegate their interests to a sub-group). In practice, the sub-groups appear to have considerable delegated authority (e.g. being able to issue materials without the explicit agreement of all of the NCOs).

2.15 The planning event also developed a set of criteria for members. These were:

• [A] ^[12] national organisation (with at least a base in Scotland) or a national forum.
• [Having a] primary focus on carers.
• Voluntary sector.
• [Having a] commitment to work with other carer organisations to further the vision of the NCO.

2.16 A decision was taken that no new invitations should be issued to join, but that members should review NCO partnerships and alliances in the light of the event. The relationship between the Network and the Scottish Government was also reviewed, and a key action point agreed that the Network should "maintain the mutually beneficial open door relationship" existing with the Government.

The status and current work of the NCO Network

2.17 The NCO Network has no current formal status, being an aggregation of organisations coming together for a common purpose. As such, it is unable to apply for funding in its own right, and could not enter into a legal agreement. There are no office bearers, and chairing of individual meetings is undertaken either by the host organisation (i.e. the provider of the venue), or by rotation. Neither sub-group has a nominated chairperson, nor convener. Administrative support is provided on a voluntary basis (largely by Carers Scotland, but also by others). The Network has adopted a visual identity (a graphic with the seven organisations' logos) for the purposes of, for example, replying to Scottish Government consultation documents.

2.18 In a number of cases, individual NCOs have acted as a host employer for the Network. For example, the Carers Trust performs this function in relation to the Alliance, and a similar arrangement exists for channelling Scottish Government monies for the NCO Carer Training Consortium. This can also be the case for projects undertaken on behalf of the Network, with Carers Scotland, for example, organising the Carers Parliament on behalf of the Scottish Government. In this respect, Carers Scotland, as a legal entity, has been able to enter into contracts (an option which would not be available to the Network).

2.19 The specific work of the Network (in the four "pillars") is described below.

Policy

2.20 The development of policy (directly and indirectly) was identified in the review as being a key function of the Network, encompassing a number of strands.

Policy development relating directly to carers

2.21 The NCOs have played a significant role in the development of the national carer and young carer strategies, participating in, for example: preparatory research, developing carer outcomes, and identifying proposals. Although the NCO Network was not itself a formal signatory to the strategies, it (as well as individual NCOs) has also been closely involved in taking them forward and has, through individual NCOs, received a range of funding to deliver some of the proposals (e.g. relating to carer training and developing short breaks). It should be noted that the NCOs also undertook strategic policy work prior to these strategies and, for example, individual NCOs were involved in the first national strategy in 1999, and the NCOs and some larger Carer Centres were involved in the Care 21 report.

2.22 The NCOs (although not the Network), are members of the Carer Implementation Group, set up to provide oversight of progress towards the achievement of the outcomes in the national strategies. Many local areas also now have carer and young carer strategies (building on the national approach) and it was noted that the NCO Network sometimes contributed to the development of these.

2.23 The NCO Network has also been directly involved in policy development in a number of other areas specific to carers. In some cases, this has been undertaken by individual NCOs supported, and / or taken forward by the Network. Examples include work on the Employers' Kitemark (by Carers Scotland) and the development of Best Practice Standards for Carer Engagement (by the Coalition). The NCO Carer Training Consortium has developed quality standards for carer training, currently being promoted across local organisations. Shared Care Scotland has led on the development of a wide variety of policies relating to short breaks, generally supported by other NCOs. Such policy work by individual NCOs is considered relevant to the Network as a whole, and is discussed at NCO Network meetings.

2.24 The roles of the Young Carers Festival (organised by the Alliance on behalf of the Network) and the Carers Parliament (run for the past two years and organised by Carers Scotland on behalf of the Network) in national and local policy development were also identified by a range of stakeholders.

Policy development in other relevant areas

2.25 Individual NCOs, acting on behalf of the Network, have also contributed to a wide range of other working groups, work streams and forums in other relevant policy areas. This has involved both written submissions, and individual staff members from NCOs attending meetings. A number of these policy areas have related to proposed Scottish Government legislation. The NCO Network, for example, contributed to the development of Self-Directed Support ( SDS) policy (in early discussions on the potential shape of the legislation, at the drafting stage, and in detailed consideration of specific issues such as charging). It also facilitated wide-ranging consultation on the draft Bill. Following enactment, the Carers Trust (on behalf of the Network) developed a guide for carers.

2.26 A range of other policy areas were identified where individual NCOs, acting on behalf of the Network, were seen to have made significant contributions. These included particularly the integration of health and social care and joint commissioning, but also other areas such as housing. The Network (as well as individual NCOs and local carer organisations) has been closely involved in the development, implementation and monitoring of Carer Information Strategies, led by the NHS. It has also contributed to policy relating to specific conditions (e.g. by highlighting carers' issues relating to dementia and autism). More generally, the Network has contributed to proposals for reshaping services for older people.

Briefings

2.27 The Network, through its policy sub-group, has prepared a number of briefings on a range of policy issues including, for example: benefits issues; housing issues; welfare reform; SDS; and the potential impact of the independence referendum on carers and carer organisations. It has also developed briefings on both Scottish and UK budgetary matters as these relate to carers and carer organisations. Most of the briefings have been targeted at carer organisations and others working with carers (and individual carers), but a number have been prepared specifically for MSPs or Scottish Ministers. In this context, the Network has also made a range of contributions to the cross-party group on carer issues within the Scottish Parliament.

Lobbying

2.28 In some cases, the NCO Network and its members have directly undertaken lobbying. In other cases, the Network has facilitated lobbying by carers (e.g. in meetings with Ministers, or through events such as carers' hustings). The Network has also supported UK level campaigning and lobbying via the Carers Trust and Carers UK (e.g. on welfare reform and other issues). A small number of participants in the review also mentioned the development of the Carers Manifesto, published at the time of the 2007 and 2011 Scottish Parliament elections, and updated for the local authority elections in 2012.

Scottish and UK Government consultations

2.29 Where Scottish and UK Government consultations have a direct bearing on carers, the Network has generally chosen to respond through the policy sub-group. In general terms, the responses have represented a composite view of the NCOs (with, in some cases, direct involvement of carers via focus groups or through e-mailed requests for views). In the case of the recent carers legislation consultation, the Coalition (on behalf of the Network) organised a large number of carers to respond to the proposals on an individual basis. Members of the policy sub-group also met with a variety of other third sector organisations to provide briefings on the issues in the proposed legislation, to help inform their own submissions.

Research

2.30 With a few exceptions, the NCO Network has not carried out primary research. It has, however, had a clear role in research in the following ways:

• Identifying the need for research on particular topics.
• Commissioning research (although this has been relatively unusual).
• Facilitating and providing a Scottish dimension to UK research.
• Facilitating access to carers for researchers.
• Interpreting and disseminating research carried out by others.

2.31 The NCO Network has also supported research by individual NCOs, including, for example, research on family members employed using SDS ( MECOPP), and research on short breaks (Shared Care Scotland on behalf of the Scottish Government). The Carers Manifesto also drew on a range of primary and secondary research sources, and some of the supporting materials were adapted from research carried out by others at a Scottish and UK level.

2.32 In a small number of cases, members have carried out primary research on behalf of the Network. The most obvious example is the development of a Carers Charter (commissioned by the Scottish Government from Carers Scotland and MECOPP). The NCO Network has also made a direct contribution to research undertaken by others (e.g. research on developing carer outcomes, on the implementation of SDS, and the current review).

Engagement

2.33 The NCOs have been involved in facilitating access to carers' views at a national and local level (although the latter has generally been through, for example, Carer Centres rather than directly). There has been a high level of co-operation and joint working in this area between national and local organisations (e.g. in hosting events, or supporting carers to take part in national forums).

2.34 Perhaps the most visible form of engagement for adult and young carers has been the Carers Parliament. The key role of the Young Carers Festival in engaging a "hard to reach" group of carers was also noted. This has run for four years (with a further event due in August 2015) and brings together young carers from all over Scotland for time out from caring and to contribute to policy development. As noted earlier, it is organised on behalf of the NCO Network by the Alliance, and is funded by the Scottish Government. There are also a range of other means of securing carer engagement.

2.35 As noted, the Coalition (with national and local carer organisations), developed and published standards for carer engagement. The NCOs, individually and as a Network, have also participated in Carers Week, which is organised at a UK level, but has a number of Scottish-specific activities.

Services

2.36 Although identified as one of the key pillars of work of the NCO Network, the work encompassed by "services" has not been clearly defined. With limited exceptions, the NCO Network itself is not a provider of services either to carers or local carer organisations (although most individual NCOs do this in some form).

2.37 The work of the NCO Carer Training Consortium (e.g. trainer training and its grants programme) and the management of Short Breaks funding, however, could be considered national level "services" provided on behalf of, but not directly by the Network. Some initiatives mentioned earlier (e.g. the Young Carers Festival or Carers Parliament) could also be viewed in this way, as could the guide to SDS. In reality, however, most service delivery to carers is carried out at a local level by, for example, Carer Centres, Crossroads branches and other organisations.

Relationships with other types of organisation

2.38 Carers are also a key client group for a wide range of organisations other than NCOs and local carer organisations, including, for example, local authorities, the NHS, and third sector bodies. Examples were identified in the review of a range of ways in which non-carer organisations interact with carers. While not comprehensive, this included:

• Producing strategies, or in reference / advisory groups.
• Research.
• Awareness-raising campaigns or events.
• Development of specific services to carers and young carers directly funded by the non-carer organisation.
• Provision of short breaks to the carer by providing a specialist service to the cared for person.
• Joint national or local partnership projects with carer organisations.

2.39 There was evidence of distinctions in how different types of organisation viewed carers in the context of their work. Public bodies, for example, located carers as key partners, and clients in their own right. In some other organisations, there was a focus on carers and cared for persons as a "family unit". In others, organisations stated that, where there was potential conflict of view (e.g. between a carer and cared for person) their role would be to support the cared for person, while some carer organisations stated that their focus would be on the carer.

2.40 Although most non-carer organisations involved in this review were familiar with all of the NCOs, most had only had contact with a subset. For some non-carer national organisations, their most sustained level of contact had been local.

2.41 Examples of co-operation between carer and non-carer organisations were:

• Carer organisations being members of other types of organisation (and vice versa) both at a national and local level.
• Shared Board membership, in a small number of cases at a national level, but more commonly at a local level.
• Supporting carers individually to be members of Boards, reference groups or other strategic groups (again at a national and local level).