External Review of the National Carer Organisations (NCOs)

Section 1: Introduction and background

1.1 This report presents the findings of a review of the National Carer Organisations ( NCOs) in Scotland. The work was carried out by Reid Howie Associates for the Scottish Government between November 2013 and June 2014.

1.2 The report is in 5 sections. This section describes the overall context for the review, and summarises the methodology. Section 2 presents the findings relating to the work of the NCO Network. Section 3 describes perceptions of the Network, while Section 4 summarises suggestions for the way forward. Finally, Section 5 summarises the key conclusions and recommendations which can be drawn from the findings. Annexes contain: a description of support available to carers in Scotland; a summary of the work of each individual NCO; issues relating to potential structures for the NCO Network; and an overview of the research methodology.

Background to the research

1.3 The review of the seven NCOs in Scotland followed a commitment by the then Scottish Minister for Public Health, and built upon an initial scoping exercise by the Scottish Government's internal consultancy team. The main purposes were to:

• Examine options for the reform of NCOs and the NCO Network (a national grouping bringing together the seven NCOs ^[1] ) from, at one end of the spectrum, remaining with the current set up to, at the other end, recommending a full merger of two or more NCOs.
• Consider a shared vision and workplan around the outcomes for carers that the NCOs want to achieve.
• Make recommendations about the interface between the NCO Network and other relevant organisations, as well as about potential assessment criteria for inclusion as an NCO.

1.4 Related to these aims, there were a number of objectives, which were that the recommendations made should help to achieve:

• The optimum outcomes for carers.
• The most efficient and effective use of resources.
• The optimum outcomes to ensure that the Scottish Government Carers Policy Branch and the NCOs best serve each other.

1.5 The seven NCOs in Scotland ^[2] are:

• Carers Scotland.
• Carers Trust Scotland (formerly known as the Princess Royal Trust for Carers).
• Coalition of Carers in Scotland (the "Coalition").
• Crossroads Caring Scotland.
• Minority Ethnic Carers of Older People Project ( MECOPP).
• Shared Care Scotland.
• The Scottish Young Carers Services Alliance ("The Alliance").

1.6 The overall role of the NCOs can be summarised as being to aid the delivery of the Carers ^[3] and Young Carers strategy documents ^[4] , and to ensure that the organisations are operating effectively and efficiently to support policy relating to carers, and carers themselves. While the main focus of the review was on the NCO Network, it was impossible to undertake this without considering the work of the individual NCOs. This helped to provide an overall picture of national support to carers, and the detailed findings relating to the individual NCOs are presented in Annex 2. The main sections of the report focus on the Network.

The context for the report

1.7 For around 15 years, there has been a clear and increasing focus on the needs and issues experienced by unpaid carers and young carers in Scotland. The key milestones are outlined briefly below, along with some of the key current developments, in order to set the review in its wider context. Firstly, however, it is important to clarify the terms used in the review. The definition of "carer" (from "Caring Together") is as follows:

"Carers provide care to family members, other relatives, partners, friends and neighbours of any age affected by physical or mental illness (often long-term), disability, frailty or substance misuse. Sometimes the cared-for person will have more than one condition. Some carers care intensively or are life-long carers. Others care for shorter periods. The carer does not need to be living with the cared-for person to be a carer. Anybody can become a carer at any time, sometimes for more than one person. Carers are now, and will remain, fundamental to strong families and partnerships and to resilient and cohesive communities.‟

1.8 The definition of a "young carer" (from Care 21) is as follows:

"A child or young person aged under 18 who has a significant role in looking after someone else who is experiencing illness or disability.‟

Strategy and policy

1.9 The first step in developing a clear focus on carers and young carers was the publication of a Strategy for Carers in Scotland (Scottish Executive, 1999). A subsequent key development was the publication of the Care 21 report in 2006 ^[5] , which set the foundations for a considerable expansion in support for unpaid carers.

1.10 Two strategies, published in 2010 ( "Caring Together" and "Getting it Right for Young Carers") ^[6] set out a vision and actions to achieve better outcomes for adult and young carers. These are central to this review, and are that carers will:

• Have improved emotional and physical wellbeing.
• Have increased confidence in managing the caring role.
• Have the ability to combine caring responsibilities with work, social, leisure and learning opportunities and retain a life outside of caring.
• Not experience disadvantage or discrimination, including financial hardship, as a result of caring.
• Be involved in planning and shaping the services required for the service user and the support for themselves.

1.11 Since 2010, the Scottish Government, through the NCOs, the NHS and local authorities, has invested significant sums in work towards achieving these outcomes. This has included investing in diverse areas such as: support to help organisations of and for carers; emotional and other support for carers; training; and the establishment of funds to support short breaks (and promote innovation in these).

1.12 There have also been developments in other policy areas which impact on carers, including, for example, Self-Directed Support and the integration of health and social care. Evidence from NCOs and carer organisations suggests that many carers have faced challenges as a result of reductions in local authority services and changes in, for example, prioritisation criteria. Carers have also experienced the impact of aspects of UK welfare reform. There have also been developments in policy and support for groups who may require care (e.g. people with dementia, people with learning disabilities and disabled children).

1.13 There is now a complex "system" of support for identified carers, with many organisations providing this, including some NCOs, Carer Centres, GP surgeries, social work services and, increasingly, condition-specific organisations. There is also information and support via helplines, the internet and social media. Annex 1 summarises this support, helping to set the review in its wider context.

Other developments

1.14 At time of writing, there is considerable work taking place. The Statement of Intent, issued by the Scottish Government to coincide with the second Carers Parliament, set out a number of additional measures to support carers, including:

• Giving carers access to an assessment on the same basis as other service users.
• The potential for a duty on public bodies to support carers linked to eligibility criteria.
• Improved access to information and advice.
• A consultation on carers' legislation.
• Improvements to the status of carers as equal partners in the shaping, planning and delivery of support and wider strategic decisions.

1.15 Previously, the Government identified a number of other initiatives, including:

• Advocacy for carers.
• Improving information for carers (e.g. through the implementation of Care Information Scotland and other means).
• Removing the potential for carers to have to pay for support for themselves.
• Changing the ways cared for persons can employ family members.
• The enactment of the Public Bodies (Joint Working) (Scotland) Act 2014, in relation to the functions of local authorities and Health Boards.

1.16 There have also been significant developments through the Children and Young People (Scotland) Act 2014, and in support to young carers (e.g. improved awareness among health, education and social care services of issues for this group, and the ability to recognise and support them). Some of the support has been made available directly to young carers (e.g. short breaks, social and emotional support, and events such as the Scottish Young Carers Festival). Some initiatives mentioned earlier are also either ring-fenced for, or available to young carers.

1.17 There have also been changes to local services. There is evidence of increasing pressure on unpaid carers through the rationalisation of support to cared-for persons (e.g. through tightening of eligibility criteria for some services). More widely, welfare reform is having a significant impact on carers, directly and indirectly.

1.18 The Scottish Government has recognised the need to continue to promote change, to improve outcomes for carers and to ensure a more consistent approach across Scotland. The First Minister indicated an intention to strengthen and extend the rights of carers and young carers at the Carers Parliament in October 2013. At the time of this review, the Scottish Government was undertaking a consultation on legislation to further support carers and young carers in Scotland (which closed on 16 ^th April 2014). Responses were being analysed when this review report was being prepared, with a view to publication in early 2015.

The overall importance of issues for carers and the need for the review

1.19 These developments illustrate the importance of carers' contributions to the delivery of health and social care and the need to ensure that the support provided to them is as efficient and effective as possible. The Scottish Government estimates that there are over 650,000 unpaid carers in Scotland, and 100,000 young carers (and is currently analysing all of the main Scotland-wide sources of data with a view to publishing revised information). There are also many "hidden carers".

1.20 Against this background, the work of the NCOs and the NCO Network was examined. The review gathered a range of information which, in summary, included: documentary information; interviews and group discussions with a range of stakeholders; and a written "consultation" with two strands (one involving carers and those working with them; the other involving relevant organisations). The full methodology is described in Annex 4. The remainder of the report provides the findings and implications of the review.