External Review of the National Carer Organisations (NCOs)

Section 3: Perceptions of the NCO network

3.1 This section highlights perceptions of the Network (from all strands of the review). It is important to state that there was found to be a near consensus that there was a need for an NCO Network, with a prevalent view of the benefits of the NCOs coming together nationally (particularly collaboration on themes of common interest). A number of other benefits were highlighted and are discussed below, along with some concerns and challenges under some broad common themes.

Provision of a voice for carers

3.2 One of the most common perceived benefits of the NCO Network was the provision of a "voice" for carers. The "collective voice" of the NCOs was seen to strengthen the message and ensure it was heeded, and some NCOs highlighted the value of their specific focus on carers. It was also argued that the NCO group was seen to be "in touch" with carers and able to provide a coherent view, which helped ensure that strategies would be carried forward. The lobbying potential was also highlighted, and a number of participants added that "campaigning" work required a joint approach, as did tackling issues such as inequalities and poor practice.

3.3 In the context of these positive views, however, some concerns were raised about the lack of a clear national structure for identifying and representing the carer "voice". One discussion group argued, for example, that there was a "fragmented" national voice. There was also a perception that national links to carers tended to take place via individual NCOs, rather than being co-ordinated by the Network. Participants in one group suggested a lack of coherent links in Scotland between local mechanisms for identifying carers' views and regional and national structures. This was seen to be compounded by considerable local variation in the effectiveness of local consultation and the level of contact with carer organisations. One NCO discussion group expressed the related view that this constrained the Network's ability to encourage carers to engage locally, and to be able to speak on their behalf.

3.4 Some stakeholders expressed concern that the NCOs themselves were not representative, and one carer and workers' group argued that, unless a local organisation had a link to a specific NCO, there was no way to raise local issues. A perceived general lack of a "proactive" approach to representation was also raised. Some of the NCOs themselves were also concerned that, if an organisation such as the Scottish Government or local authority perceived the Network as unrepresentative, they may assume a lack of an evidence base, and take the issues raised less seriously. A further challenge highlighted by some NCOs was a lack of clarity about work that could be undertaken without impacting on funding, particularly in terms of the distinction between "campaigning" work and "representation".

Contribution to policy and developments

3.5 Closely related to providing a voice for carers, a further benefit of the Network identified frequently by stakeholders of all types was its role in raising awareness of carer issues in policy development. One organisational survey respondent, for example, suggested that the Network helped keep carer issues current at a national level. It was also argued that the NCOs were well-placed to inform future policy direction and lead on long term planning. Many different participants indicated that the profile of carers and carer issues had been raised significantly in recent years.

3.6 A number of participants identified the benefits to other organisations of a "consultative" or "expert" function for the Network. This included responding to specific consultations and providing a "carer perspective" in policy development. As well as agreeing a joint response to consultations, the NCOs argued that the Network could carry out background work to enable other participants (e.g. carers, local organisations and individual NCOs) to formulate their own responses.

3.7 A number of respondents highlighted the valuable role of the Network as a strategic partner. Some NCOs, for example, identified its role in providing expert representatives to national policy groups, while one organisation argued that a key strength was the recognition by local authorities, health boards and government of its role in developing policy and practice. Some organisations gave examples of partnership working between the Network and both statutory and third sector organisations. One added that such contact made organisations more aware of issues for carers. A number of NCO Board members highlighted the impact on joint working between their NCO and local partners. Specific examples cited of the Network's effective policy influence included: the development of the carers strategy; input to carers' legislation and guidance on SDS, and the Carers Charter.

3.8 There were, however, also some concerns about the Network's contribution to policy, particularly in terms of perceived lost opportunities for partnership working. It was suggested, for example, that links tended to be ad hoc and opportunistic, with a lack of strategic contact. It was noted in the NCO discussions that the selection of representatives to policy groups also tended to be ad hoc, with requests for input often made directly to individual organisations rather than through the Network.

3.9 One NCO discussion highlighted a variation in awareness of the Network among national and local organisations. It was also clear from conversations with NCO Board members that they were not all aware of the nature of other NCOs. One worker suggested that, if some of those in the field lacked awareness, many other organisations and individuals would also have limited knowledge, which could lead to variation in the Network's involvement in relevant discussions.

Research and oversight

3.10 A further strength of the NCO Network was seen to be its role in research, particularly in gathering and collating evidence to support other work. As with other aspects of the role, it was suggested that smaller organisations working individually would not have sufficient resources to carry out this type of work alone. The role of the Network in joint research was seen to enable the NCOs to take an oversight role (e.g. of service provision to carers, the work of the NCOs and local organisations, and Scotland-wide issues). It was argued that this could help highlight gaps in provision, or potential developments. Some respondents gave examples of using national level research to support local change.

3.11 The research function was also seen to give the NCOs an overall picture of their own work. The NCOs and other participants argued that this could help avoid conflicting agendas and duplication, and make more effective use of funding. There were no specific concerns raised with this work (although clearly some of those relating to mechanisms for providing a coherent carer "voice" are relevant here).

Developing capacity

3.12 The NCO Network was also seen to add value in developing capacity, both for the NCOs and others. Some organisations suggested that the NCOs' diversity increased the Network's capacity and range of skills, and a number of NCOs identified merit in pooling resources. Specific expertise was also seen to assist in raising issues for particular groups of carers (e.g. young carers and BME carers).

3.13 Many participants highlighted the importance of links between some NCOs (particularly the Carers Trust and the Coalition) and local organisations in helping build capacity. Board members in a number of NCOs were clear that local capacity building was a key element of their work (although these views related to individual NCOs rather than the Network). It was also suggested that the Network could enable access for local organisations to training and support which would help them to provide inclusive and varied services. It was further argued that the Network could provide coherent direction, and promote more consistent standards among organisations addressing relevant issues. A few survey respondents suggested that it could help attract resources for carer issues by supporting the national agenda which could, in turn, generate funding for local carer support.

3.14 Some specific concerns were raised, however, about the currently limited ability of the NCO Network to develop capacity further. A specific point was made in relation to supporting people with specific needs (e.g. substance misuse; mental health issues; learning disabilities; age-related issues; and autistic spectrum disorders). It was also suggested that there may be a lack of attention to carers in other particular circumstances (e.g. male carers). The role of specialist organisations (national and local) in providing such support was highlighted, and it was suggested that, given the largely ad hoc links between them and the NCOs, there may be limited attention to the needs of some groups of carers. It was also suggested that those providing support to them may feel isolated from other carer organisations. There were also some concerns about the ability of the Network to develop its own capacity, and limitations on availability of staff and time (discussed later).

Communication

3.15 A further commonly identified benefit of the Network was its role in sharing information, experience, developments and good practice in carer issues. The knowledge base, diversity and expertise within the Network was identified, and one individual survey respondent suggested that this gave it additional credibility.

3.16 The role of the Network in information sharing was seen to have benefits for the NCOs themselves, with members able to draw on each other's expertise. It was argued that this enabled mutual learning, and one NCO discussion group suggested that individual NCOs trusted each other to take an appropriate common approach. It was also argued that the Network could identify the NCO with the most appropriate expertise to take particular pieces of work forward on their behalf.

3.17 In terms of wider information sharing, some NCOs highlighted the value of providing material (such as policy briefings) to members. Some worker and carer discussions also highlighted the opportunity to share good practice as potentially contributing to consistency and improved standards in support to carers.

3.18 One NCO stakeholder described the Network as a "strong brand", while another stated that it had become an established entity in its own right. This view was not, however, shared by all participants, some of whom suggested that the brand was weak, and not well-recognised. In this respect, it was acknowledged by NCOs that the "group" did not have a consistent title, and was referred to by different participants in different ways.

3.19 While a number of stakeholders argued that the NCO group was likely, as a "national entity" to have limited visibility to individual carers, there was a concern that this may also be the case with some organisations. For example, some of those in the survey, and many discussion group participants stated that they could not comment in detail on the NCO Network, as they were unaware of its remit or aims. At a general level, some NCOs recognised a lack of profile and national "branding" (or logo), which it was suggested could contribute to an overall lack of understanding of the Network.

3.20 Some participants expressed concerns about a perceived lack of dissemination of information to other organisations (about the work of the Network or carer issues more generally). One stated that this was particularly an issue for smaller organisations, and one discussion group suggested that the mechanisms through which the NCOs provided information to local areas tended to be ad hoc. It was also suggested that there was no obvious national point for access to carer information, and no obvious single resource to signpost carers to support. Some concerns were also expressed about the information available on NCO websites. (These issues are discussed further in relation to the nature of the Network overall.)

3.21 It was also argued that the NCOs did not always seek up to date and relevant information from local providers to enable them to maintain the "big picture" and carry out appropriate signposting. A few survey respondents identified a lack of collective reporting by the Network on its achievements, and one discussion group suggested "sporadic" reporting to and from the Network, with a lack of knowledge of how reporting should work. One organisation argued that there was a specific lack of information about whether the Network had, or intended to develop a strategy.

Service provision

3.22 Some NCOs (staff and Board members), and other participants, identified strengths in some direct service provision by individual NCOs on behalf of the Network. Examples included: short breaks; the Carers' Parliament; and the Young Carers' Festival (with a number of local organisations stating that the Festival was a chance to explore their own policy and practice with young people in a relaxed setting, with access to specialist support if required). It was also suggested that national provision of training and dissemination of policy information could enable access to support, information and advice across Scotland and for particular groups of carers. One discussion group argued that some information would be difficult for small, local organisations to produce, but could be done efficiently at a national level.

3.23 A small number of concerns were raised with the Network's role in service provision. One NCO discussion, for example, identified a potential lack of clarity about this. It was also argued that the Network's role in developing opportunities (and resources) was constrained by a lack of a formal structure, and inability to bid directly to carry out pilot work to address gaps in provision. It was argued that, as result, the Network's role in service delivery tended to be responsive rather than proactive, and located largely with individual NCOs rather than the whole Network.

The nature of the Network overall

3.24 There was a shared view that the NCO Network added value to the work of individual NCOs, and none of the NCOs (staff or Boards) identified problems with the nature of the Network overall. A number of concerns about this were raised, however, in the surveys and discussions with carers, workers and others.

The basis of participation and the informal structure

3.25 There was a strong consensus amongst the NCOs that the Network operated as a democratic organisation of equal partners. They argued that the informal structure had functioned well to date, with positive working relationships forming a good basis for their work. A number of other stakeholders, however, expressed concerns about the lack of formal partnership arrangements and perceived constraints. Some NCOs themselves suggested that this could make it difficult to describe the Network, and for others to recognise it as an entity, which may lead to missed opportunities for joint working. It was also suggested in one NCO discussion that the current "goodwill" model may not be sustainable in the longer term, nor allow the Network to develop to meet new challenges. It was suggested that it could be a "fragile basis" for long term involvement, and vulnerable to changes in organisations.

3.26 A further challenge identified (linked to the structure) related to the limited resources and capacity of the Network. Some NCOs highlighted the demands of participation in, organisation and co-ordination of meetings (although the chairing and administrative processes were seen to work effectively). It was also suggested that other organisations may not realise the lack of resources, which may affect their expectations of the Network. Linked to this, a lack of core resources (and the inability to apply for funding as a result of the structural arrangements) was seen to constrain the work that the Network could realistically undertake. One NCO discussion group argued that the Network was operating at capacity, at a time when a lot of relevant work was developing.

3.27 The NCOs stated that the agenda and work streams for the Network were largely defined by mutual consent, with no issues with individual organisations pursuing their own agendas. There were seen to be challenges in responding to an agenda and timescales determined by others, often requiring "reactive" work quickly. A few individual survey respondents also expressed concerns that resource issues for individual NCOs could undermine the Network's collaborative work. Some participants also expressed concern that the source of funding may lead to conflict of interest, or constrain organisations' ability to "speak out" on some issues (although some NCOs argued that this related to the methods used rather than subject matter).

Composition and membership

3.28 There was a shared view among NCOs that the Network membership and the work of the members was appropriate, with no perceived gaps or overlaps. Although the risk of this was acknowledged, it was argued that the existence of the NCO Network, the frequency of meetings, and the commitment to an agreed approach to taking work forward meant that this was not an issue in practice. In terms of external perceptions, however, it was argued in discussion groups and in the survey that there may be duplication in what the NCOs appeared to do, with not always clear differentiation between their functions. Related to this, it was noted that there were a number of similar posts (e.g. senior managers and policy staff) in different NCOs.

3.29 Additionally, although the NCOs argued that the number of Network members was appropriate, (with diversity seen as a strength), it was suggested frequently in the carer and worker discussions and survey that there were simply too many NCOs in the Network. A further concern expressed was that the number involved could lead to different approaches, and may not promote effective joint working. One group argued that the number of NCOs could dilute their impact on cross-cutting issues, particularly if several were working individually on these.

3.30 It was also stated in some discussion groups that the number of NCOs meant there was not a single source of national cross-cutting information (noted earlier). It was argued that separate NCO websites made finding relevant information difficult. A number of participants also noted that they had, at times, been misled by England-specific information on websites (including the Carers Trust, Carers Scotland and youngcarers.net, which is referenced by the Alliance). It was also noted in one discussion that, while they had assumed that the Carers Trust "find your local Carer Centre" search facility would identify all such centres, they found that only those paying affiliation fees to the Trust were listed (which, it was suggested, might lead to a carer assuming wrongly that there was no Carer Centre in their area).

3.31 In terms of links to other organisations, it was suggested that the number of NCOs made it difficult for local carer organisations to have contact with all of the NCOs (however beneficial this may be). It was further argued in one group discussion that it was sometimes difficult for those outside the NCO Network to know which organisation led on which issue (although the NCOs themselves believed there was clear delineation of responsibility). It was also suggested that small local organisations could find it difficult to know how to link to the Network.

3.32 Some organisations suggested gaps in representation and a lack of clear criteria. Variations were noted in current members' remits, functions and service user groups, and it was argued that the Network may not be representative of all organisations working with carers (e.g. condition-specific organisations). A number of non-carer organisations suggested that carers, cared for people, and organisations working with them, shared a common purpose, and a small number criticised the distinction implicit in having separate carer and non-carer organisations. Questions were also raised about how representative the Network was of other subsets of carers (e.g. older carers, LGBT carers and carers in rural areas).

3.33 A small number of issues were raised about individual members of the NCO Network. In each case, these were not directed at the work of the organisation per se, but their participation in the Network. For example, a number of stakeholders questioned whether MECOPP, as presently resourced, could capture and channel the voices of BME carers at a national level (with its primary service in Edinburgh and a small number of associated projects elsewhere in Scotland). Secondly, a small number of stakeholders raised issues with the inclusion of Crossroads (as a service provider to individual carers, and similar to others providing such a service). Thirdly, it was noted that Shared Care Scotland was primarily a provider of intermediary services to cared for persons, rather than directly to carers (although it was also suggested that this could be described better as a focus on the "family").

3.34 The value of having members with specific expertise on issues for BME carers, however, was acknowledged. Additionally, it was noted that Shared Care Scotland provided a variety of national level services to carer organisations (e.g. in relation to sharing best practice and policy development) and, in this regard, operated in a similar manner to, for example, Carers Scotland.

3.35 It was recognised in one NCO group discussion that there had been some historical difficulties in determining the nature of membership and identifying clear criteria. One NCO stated that there may be frustration among other organisations about current members' perceived "gatekeeping" role. Some participants argued that current representation was not necessarily the most effective use of resources.

Funding

3.36 The review identified that funding for the NCOs and the Network's work was complex. The NCOs were found to vary in their status, structures and work, making it difficult to identify funding relating specifically to Scotland, and to national level or strategic work. (Funding is described more fully in Annex 2, although specific details are not given because of commercial confidentiality.) The detailed examination of the funding situation raised some issues about how national work was being funded within the overall pattern of NCO funding. "National" support for carers has consisted of a mixture of core funding for individual NCOs and a large number of projects. The bulk of funding for the work of the Network has been provided to NCOs by the Scottish Government through Section 10, which has generally been given for individual projects. Individual NCOs have been given funding largely for purposes other than "Network" functions. The Network has received no direct funding.

3.37 This has meant that most pieces of national work have been the subject of individual bids to the Scottish Government (with a small number of exceptions). The practical effect of this has been that "national" activities have been funded in a piecemeal way (exacerbated by the fact that each national activity has been the responsibility of an individual NCO, rather than the Network). This could clearly constrain the opportunity for an overall strategy, underpinned by a budget matched to an action plan and outcomes.

3.38 It was also clear from information provided by the NCOs and the Scottish Government (which was again examined thoroughly, but not included for reasons of commercial confidentiality), that most individual NCOs have been highly reliant on Scottish Government funding. In the longer term, this seems unlikely to be sustainable, and may leave the NCOs (and their work individually and collectively) vulnerable to changes in policy or priority.