External Review of the National Carer Organisations (NCOs)

Section 4: Suggestions for the way forward

4.1 As noted previously, although the review identified a number of concerns and challenges for the NCOs, there was a common view of the value of a national approach to carer issues, and the need for some form of national body. Many suggestions were made about how the NCO Network could become more effective, and enhance its national influence ^[13] . These focused on two areas: the overall purpose and work of the Network; and structural considerations.

Overall purpose and work

4.2 The review identified common suggestions for the overall purpose and work of the NCO body. Common themes for the aims of the body were to:

• Improve outcomes for carers.
• Promote carers' rights.
• Provide a voice for carers.
• Improve support for carers.

4.3 Within this, many suggestions were made about specific areas of future work. These were broadly of 5 main types, all closely linked, as follows:

• Policy development.
• Research and oversight.
• Developing capacity and practice.
• Communication.
• National level services.

4.4 Suggestions made in each of these broad areas are described below.

Policy development

4.5 Some key elements of the future role of the NCO body in policy development were identified, with many detailed suggestions. Firstly, there was seen to be a role in strategic development. Suggestions included developing a strategy for the NCO body itself, specifying its aims, key areas of work and how progress would be measured. Related to this, it was argued that an action plan should translate the strategy into practice, specifying clear tasks and responsibilities. A continuing role was also identified for the NCO body in the production of other strategic documents. A number of participants noted that the NCO body could make significant contributions to the new carer and young carer strategies (expected to be developed at some time from 2015 onwards).

4.6 The second broad aspect of policy development identified was input to national policy. It was suggested that the NCO body should be involved in stimulating interest in carer issues, promoting these interests in policy, and supporting the development of positive local initiatives into national practice. The role was seen to involve scrutiny of policy proposals, and negotiation and representation of carer issues at a national level (e.g. with Government) to influence policy and legislation (e.g. through participating in policy groups and forums and responding to consultations / legislation on behalf of carers).

4.7 Linked to the input to policy, suggestions were made about the role of the NCO body in consultation and representation. These included that it should work to develop a coherent national "voice" for carers, identifying and taking forward their views through a clear structure for regular contact, as well as through research and lobbying and campaigning. Suggestions were made about the need for the NCO body to act as an "intermediary" or "bridge" between carers, support organisations and policy makers. It was suggested that the body should also promote a clear understanding among carers about representation processes. A number of specific issues were suggested for promotion (e.g. carer involvement in service design; carers' income level; welfare reform; the health impact of caring; succession planning; and issues for marginalised groups).

Research and oversight

4.8 Some key elements of the future role of the NCO body in relation to research and oversight were also identified. Among these was evidence gathering, both through carrying out research and collating existing evidence on carer issues (e.g. "big picture" statistical information; other relevant national and local research; and disaggregated local information, where available). This would include, for example: gathering baseline information and mapping provision to carers. It could also include an annual survey of carers, and identifying ongoing means of gathering their views.

4.9 There was also seen to be a role for the body in identifying new areas for research, or influencing the Scottish Government's research priorities (although it was noted that UK level carer organisations already carried out research, and that the NCO body or individual NCOs could apply for research funding from other sources). There were mixed views of the extent to which the NCO body should actually carry out research, although some potential research issues were highlighted (e.g. mental health and carers; the economic case for caring; issues for marginalised groups; and identifying "hidden" carers).

4.10 Closely linked to evidence-gathering, another key element of the research role identified was to use this information to support other functions of the NCO body (e.g. linking findings to policy making; representing carer views etc.). This could also include developing a research resource for other organisations to support their work and to learn from national research. It was suggested that this could provide one point of access for common information about carers, simplifying the research process, and minimising the demands on the time of individual carer organisations. It was seen to be important to publish transparent research information. The organisational survey also identified a role for the body in providing advice to researchers about carer issues, and facilitating their access to carers.

4.11 It was also suggested that there should be an oversight and scrutiny role for the research function of the NCO body, in terms of identifying good practice and innovation and identifying gaps in current national and local provision. There was also seen to be a role in collating information and reporting on the work of the NCO body itself (e.g. through Annual Reports, briefings for local carer organisations etc.).

Developing capacity and practice

4.12 The development of capacity and practice in services to carers was a further area of future work identified for the NCO body. Within this, the development and provision of training was seen as an important function, including developing appropriate training and providing training for trainers which could be rolled out locally. A potential role was also identified in providing training and / or guidance to other professionals (e.g. health), and promoting the notion of embedding carer training in core training for other disciplines. The development of partnership training on specific issues (e.g. deaf awareness for carer organisations) was also suggested.

4.13 Many review participants (including a number of carers and carer organisations) saw a key role for the NCO body in the development of standards and good practice in support to carers, to encourage greater consistency in the quality of provision. There were more mixed views of whether the body should have a role in monitoring the standards. It was also suggested that the NCO body could consider promoting specific developments (such as accreditation for carers).

4.14 A further aspect of the NCO body's suggested role in developing capacity and practice related to equalities work and access to support and services for specific groups of carers (building on current work with BME carers and young carers). This would involve developing further understanding of issues for carers in these groups and in other specific circumstances (e.g. in other equalities groups; in rural areas; those experiencing poverty; those caring for people with specific conditions or in marginalised groups; and other hard to reach carers). It would include ensuring consideration of specific issues for them in work on carer issues, as well as ensuring that other work with these groups took account of issues for carers. A number of participants argued, for example, that the Alliance should have strong links with children's' services and organisations working with children at a national level. ^[14]

4.15 The NCO body was also seen to have a future role in supporting other stakeholders to develop their work relating to carers. This was seen to include developing ways of promoting local carer involvement further, with a more strategic approach to contact with them. A range of general suggestions were made about how contact and engagement with carers could be improved, to include, for example: surveys, events and meetings (accessible to working carers and those outside the central belt); a more proactive approach and wider means of contact with carers (with less reliance on the internet, email and social media); development of co-production; and development of a national register of carers.

4.16 Providing support to local carer organisations and workers was also identified as part of the NCO body's role with other stakeholders (including, for example with: funding applications; local strategies; business development; events etc.). Linked to this, the NCO body was seen to have a more general role in working to secure funding for carer issues. Organisations, however, did not generally consider that the NCO body should have a role in providing services such as management, payroll and insurance to local organisations.

4.17 There was also seen to be a role for the NCO body in developing further work with other relevant organisations (including, for example: other carer support organisations; condition-specific and disability organisations; local authorities; health boards; and others such as employers) on areas of common interest. It was suggested that there could be a more strategic approach to securing input from such organisations, providing information to them, and enabling them to engage with carers to increase their accessibility to them. It was suggested that there may also be opportunities to work with different organisations by theme (e.g. disability issues, GIRFEC etc.), through, for example, a topic-based annual engagement event.

Communication

4.18 The fourth broad area of work identified for the NCO body was communication, with two key strands of this. One strand related to the dissemination of knowledge and good practice information, including relevant research findings, publications and other aspects of the work of the NCO body to all relevant organisations. It was argued that this should be provided according to the principles of inclusive communication. The other main strand of communication was greater awareness raising, both with relevant organisations, and the wider public. Suggestions about how to undertake this included developing a national "brand" and identity (including a name) for the NCO body, and communicating this widely.

4.19 Suggestions for awareness raising with relevant organisations related to developing a more strategic approach to links and communication (discussed earlier). Within this, there was seen to be a need for feedback to such organisations of information about the NCO body and its work. It was also suggested that the NCO body should be proactive in asking other organisations to share information. In terms of public awareness raising, it was specifically suggested that the NCO body should undertake national campaigns and make greater use of the media to develop understanding of carer issues. It was also suggested that the NCO body could identify some key issues for awareness raising.

National level services

4.20 Lastly, the NCO body was seen to have a future role in providing a small number of national level services and events (although there were mixed views of this, and the main appropriate focus of direct provision to carers was seen to be at a local level). One aspect of services to carers and workers which it was suggested, however, should be done at a national level was the development and provision of national, cross-cutting information (linked to all of the above areas of work). For example, some organisations in the survey argued that the NCO body could co-ordinate information and advice about cross-cutting carer issues (e.g. with a website with separate pages for carers and organisations / workers to get up to date information quickly, and signposting to local information and organisations).

4.21 A further potential development was the production of some national leaflets / booklets and information on common issues (with specific suggestions including, for example, carers' rights; current national policy issues; differences between paid and unpaid carers; mental health; coping with caring; a "process map" for carers etc. The potential to encourage other positive developments to information (e.g. provision of leaflets by GPs; promotion of accessible material) was also highlighted, as was the potential for a national information line for carers.

4.22 The few existing services provided through the NCO Network (currently by individual NCOs) were seen to be appropriate to continue at a national level. These were: short breaks; the Young Carers' Festival; and the Carers' Parliament. It was also suggested that the NCO body could expand this type of work to include, for example: an Adult Carers' Festival and a Young Carers' Parliament; and particular events (e.g. workshops; conferences; carer and family days). Some, although not all respondents expressed a desire for more of a focus on the family unit.

4.23 The third potential strand of national service provision for the NCO body was the development of new pilot work (e.g. testing innovative ideas). While there was not seen to be a role in "gap-filling" per se, this was identified as a way of exploring new developments which could subsequently be delivered locally.

Overall development and structure of the group

4.24 As well as these particular areas of work, a number of structural changes and developments for the NCO body were suggested, although it should be stressed that there was no clear consensus about the best way forward. Some suggestions focused on particular aspects of the structure, others on specific models. The NCOs stated that they would await the outcome of the review before making a decision.

Composition of the NCO body

4.25 A number of stakeholders suggested changes to the composition of the NCO body. It was argued, for example, that reducing the number of organisations could make more effective use of resources and provide clarity of role. Some argued that there should be only one NCO, for ease of identification and contact and greater perceived efficiency. A small number suggested re-considering the basis of involvement of specific individual NCOs ( MECOPP; Crossroads Caring Scotland; and Shared Care Scotland) to ensure clear reasons for this.

4.26 A number of stakeholders suggested considering the best way of involving some additional organisations which are not, themselves, carer organisations but have a direct interest in carer issues. Among those mentioned were: the Health and Social Care Alliance; independent living organisations (e.g. Inclusion Scotland), age-specific organisations (e.g. Age Scotland); and condition-specific organisations (with Alzheimer Scotland mentioned most commonly, and a number of others identified).

4.27 One stakeholder suggested that one way to extend the reach of the NCO body would be to retain current membership and establish a wider forum alongside it (involving, for example: the NCOs; the Scottish Government; the NHS; local authorities; and a range of third sector organisations). It was acknowledged that membership would be similar to the Scottish Government's Implementation and Monitoring Group, but it was argued that, with a wider remit, it could provide a better mechanism for oversight of the National Strategy outcomes.

4.28 Alongside these suggestions, a common theme was the identification of clear membership criteria. A key issue for the NCOs has been the importance of members having carers as part of their "core" business, as well as being national organisations. However, it was recognised that it was difficult to determine when carer issues became "core business". In reality, there was a view among the NCOs that this should be an NCO's "primary" or "sole" function, to ensure that members linked well with the focus of the NCO body, and to avoid becoming a "talking shop".

4.29 As noted previously, the NCOs had produced a "holding" list of criteria, but recognised that there were anomalies in these. It was agreed that they should reflect and enable the most effective composition for the NCO body, but it was clear that there would be a reluctance to extend membership to other organisations working with carers, where this was not their sole focus. The NCOs suggested that the best option may be to co-opt expertise from other organisations as required.

Formalisation of the structure

4.30 A very common suggestion was the adoption of a more formal structure, to allow the NCO body to make funding applications and potentially increase its capacity to carry out additional specific work, and develop some of the areas suggested. It was stated in one NCO discussion that there would be a need for clear management and governance arrangements with such formalisation.

4.31 A further common suggestion was to have clear aims, objectives and purposes and high level priorities for the NCO body and for the responsibilities of members (and those carrying out functions on behalf of the body) to be clarified. It was also argued that the criteria for membership, the current members and the means of becoming involved should be specified. It was stated that there would be a need for clear oversight arrangements for each area of work (and, depending on the structure, potentially of the NCO body). Linked to this, it was suggested that there should be a clearer and more coherent approach to funding national work, identifying this clearly as being provided to the Network, and distinct from the work of the individual NCOs.

The overall approach to work

4.32 It was argued frequently (including by some NCOs) that there should be a more strategic approach overall by an NCO body. For a number of participants, this was seen to require the development of a strategy and action plan for the body, and a clear coherent approach to seeking funding.

4.33 It was also argued that there should be a more strategic approach to links with carers and relevant organisations. It was suggested that there should be an identifiable first point of contact for the NCO body, particularly for the co-ordination of links to others. It was stated that this would provide a better way of enabling organisations such as the Scottish Government and others to seek participants for policy groups and initiatives.

4.34 It was also noted that, at a local level, and particularly a national level, there would be benefits in greater joint working (e.g. on areas of current Scottish Government policy such as the integration of health and social care). It was also suggested that there could be campaigns on common issues such as poverty or welfare reform, and increased joint working on issues such the examination of the local impact of policies, and the provision of consistent support across Scotland. There was a strong view from many participants that it would be essential for a high level of contact between the NCO body and other organisations with an interest in carer issues.

Changes to individual NCOs

4.35 A few suggestions were made about the work of individual NCOs (although these tended to be general). It was suggested, for example, that they should provide clear information about their individual aims and work and that their names should reflect their areas of expertise, to ensure clarity. There was a prevalent view that NCOs should not have a role in providing local information, services and support, as they were not in the best position to know what was available, nor the nature of key local issues. As noted previously, however, there was seen to be a role for the NCO body in the provision of high level national information and signposting. It was also suggested in the carer survey that they should be held to account for their work.

4.36 A few suggestions were made about the work of named NCOs, or about how to amalgamate to a smaller number of organisations. Given, however, that this was not an evaluation of individual organisations, these will not be presented here.

Specific options

4.37 In addition to these general structural issues, a range of suggestions were made about specific structural options that could address some issues raised and develop the NCO body. While, as might be expected, there was no consensus view of the most appropriate structural option, three broad themes emerged:

• Retention of the current model of informal partnership.
• Development of a formal partnership.
• Development of one (or a small number) of national organisation(s).

4.38 Broadly, the NCOs favoured retention of a partnership in some form, while other stakeholders tended to focus on greater formalisation of the partnership, or the development of one NCO (or a reduction in number). A range of detailed suggestions were made about the models (e.g. in terms of: general structure; staffing; potential for development; efficiency; effectiveness; and achievability). These helped develop a summary of some of the key considerations implied by each and to shape the recommendations, and are presented in full in Annex 3.

Changes and developments in other organisations

4.39 A few suggestions were also made for consideration by other organisations, to assist in creating the conditions for the most effective functioning of the NCO body. For example, it was suggested that organisations such as the Scottish Government should seek the collective expertise of the NCO body as the first point of contact when inviting input. One organisation in the survey argued that carers should be part of all relevant Government groups.

4.40 It was also suggested that it would be helpful to have clear direction from funding organisations about types of work that would affect receipt of resources (particularly the distinction between campaigning work and the representational role.

4.41 A further area for development identified was the spread of understanding of carer issues (and the role of NCOs) across different organisations and parts of organisations (e.g. other policy areas in the Scottish Government). There was seen to be a need for recognition of carer issues, and clear priority for these. It was suggested that there should be mandatory training for staff in other relevant organisations about carer issues. One carer and worker discussion group suggested a HEAT (Health Improvement, Efficiency, Access to Services and Treatment) target to enable the identification and involvement of carers. Linked to this, there was seen to be a role for the NCOs and other organisations in enabling stronger links between different relevant national and local organisations.

4.42 Suggestions were also made about resources, including a general need for resources to support the work undertaken, and more specific suggestions about issues for which participants considered resources should be provided. Some comments were made about improvements to local services and support for carers, and the need for high quality, consistent provision, with appropriate resources. Specific developments to local support were also suggested, but it would be outwith the remit of this report to detail these here.

4.43 In the light of all of the issues raised, the final section draws together the implications of the findings and provides a series of conclusions and recommendations.