External Review of the National Carer Organisations (NCOs)

Annex 1: The system of support for carers and means of accessing support

This annex ^[15] summarises the wider context into which the NCOs fit, both individually and as a Network. A large amount of information was gathered in the review relating to this, which helps inform the overall picture.

The "system of support" for carers

It is clear that there is a complex system of support available to carers ^[16] . Some of this support is "direct", while some of it is "indirect".

At a direct level, forms of support include:

• Information and advice.
• Training.
• Emotional support, and a focus on health and wellbeing.
• Advocacy, or direct assistance with e.g. carer's assessments.
• Assistance in ensuring financial inclusion.
• Short breaks/respite.
• Peer support.
• Help to access to training, work or education.

Many forms of support to the cared for person are also likely to have a significant impact on carers. Examples of these supports include:

• Aspects of the promotion of independent living, including appropriate housing, aids and adaptations.
• Practical support, including appropriate housing, adaptations, equipment and assistive technologies, including telecare etc.
• Support from a Personal Assistant, or support service provider.
• Support to access training or employment.
• Access to day care and other forms of periodic support.
• Access to respite care and short breaks.

Although less common, there are also forms of support which are accessible to family units, and which may improve outcomes for carers, including:

• Support for access to social and other settings.
• Some forms of short breaks with a focus on "family" holidays.

"Indirect" support for improving outcomes for carers can include:

• Legislation, including the granting of rights etc.
• National and local strategies.
• Ensuring that carer issues are included in other strategies and through the widespread adoption of carer "proofing".
• Improving awareness of carer issues, including issues for young carers, BME carers and other groups facing additional barriers.
• Identifying a minimum standard of service provision to carers throughout Scotland, and ensuring that this is met.
• Improving the identification of both adult and young carers.
• Improving the support provided by carer and other organisations.
• Developing standards and quality assurance.
• Promoting quality assured training for carers, and for those working with carers.
• Improving joint working.
• Helping improve the sustainability of support services.
• Researching carer issues, or developing on new forms of support, training etc.

Organisations involved in providing support to carers

A primary source of "support" for carers is their own resilience and research, for example through the internet, as well as support from the cared for person, other family members and friends. More widely, a significant number of organisations are involved in providing support to carers. As will be clear from the descriptions below, some of these organisations provide support only (or largely) to carers, while others have a primary focus on, for example, the cared for person. Some organisations provide support to carers as part of a much broader remit.

Organisations specifically or largely for carers

• Carer Centres and other similar organisations.
• Other carer organisations.
• Specific projects, specialist services and specialist advice givers for carers, or particular groups of carers.

"General" organisations

• Health services and social care services.
• Education services, particularly for young carers.
• Housing providers.
• Short break and respite providers.
• Money advice and benefits advice agencies, such as the CAB.
• Advocacy services, some of which may be specifically for carers.
• "Unconnected" organisations, for example churches or colleges.

Condition-specific organisations

In addition, there is a significant number of organisations across Scotland which provide support to individuals with specific conditions, many of which also provide support directly and indirectly to carers, or provide respite and short break services.

Indirect influences on the system of support

There are also a range of organisations involved indirectly in influencing or shaping the system of support, including:

• Carers themselves.
• Lobbying organisations, including NCOs.
• Policy and research organisations, including NCOs.
• Local authorities, health organisations, partnerships and public bodies, for example, the Care Inspectorate.
• The Scottish Government.
• The UK Government.

The role of the NCOs individually and as a Network is largely, although not wholly concentrated among the indirect means of improving outcomes for carers. However, the Carers Trust; Coalition; Crossroads Caring Scotland; and the Alliance operate in two ways. Each is, either directly or through its members, responsible for local service delivery (or "direct functions"), as well as performing a national role (or "indirect functions"). Even this distinction is slightly blurred with the provision of, for example, the Carers Scotland helpline, and the information provision on most NCO websites.

Carers' interaction with sources of support

It is clear that there is a considerable amount of both direct and indirect support available to carers. A clear finding from the meetings held with carers and workers as part of this review was that, while carers may view Carer Centres as their primary source of support, they are by no means their only source. Many identified that they used Carer Centres in conjunction with other sources, primarily organisations dealing with specific conditions, as well as a variety of health services.

A total of 135 carers who responded to the survey addressed the question about whether or not they were associated with carer-specific organisations. Interestingly, 51 of these (38%) identified that they were associated with more than one carer organisation. Generally, this was either a Carer Centre and an NCO, or a Carer Centre and a smaller, local organisation.

Around 54% of those who responded to the survey identified that either they, or the person they cared for, were associated with one or more condition-specific, or generic non-carer organisation. As might be expected, there was no particular pattern to these responses, with the most common being national organisations. Among those identified (at a Scottish and UK level) were:

• Age Scotland.
• Alzheimer Scotland.
• Arthritis UK.
• Barnardo's.
• Bipolar Scotland.
• Enable.
• Health and Social Care Alliance.
• MS Society.
• Muscular Dystrophy Campaign.
• National Autistic Society.
• PAMIS.
• Parkinson's Society.
• SAMH.
• Scottish Autism.
• Scottish Huntington's Association.
• Sense Scotland.
• Spinal Injuries Association.

Carers also identified a wide range of local organisations, including, for example, local branches of national organisations or freestanding organisations (too numerous to list here).

Many also identified that they would use the internet regularly, and, increasingly Facebook as a means of sourcing both information and peer support. However, it is worth noting that the use of Facebook appeared, at least from those who attended the carer and worker meetings as part of this review, to be focused on a number of specific conditions, rather than on carer issues per se.

A number of Carer Centre workers who participated in the discussions (reaffirmed by carers) identified that their approach to supporting carers embraced multiple sources of support. A number indicated that they routinely referred clients to condition-specific organisations, as well as other forms of support (including, for example, personal development or counselling). It was also noted that Carer Centres routinely received referrals from non-carer organisations on behalf of carers.

In a number of locations, it was noted that local Carer Centres were actively working with non-carer organisations (largely branches of condition-specific organisations) and health services, as well as youth, age and faith organisations, to create, in effect, a seamless service to carers. An example was provided of this approach being supported by extensive multi-agency training on carer issues, funded by the local authority and NHS in partnership. A number of examples were also noted of Carer Centres providing training on specific conditions, in some cases supported by non-carer organisations.

It was also noted that a good deal of joint working at a local level has been undertaken as part of initiatives to identify hidden carers. Again, these have not only involved health, social work and education services, but also condition-specific, and age-specific organisations.

It was suggested by some carers that they used different sources of support at different times, and for different purposes. This was allied to the "carer's journey" ^[17] concept where, for example, early needs related primarily to knowledge about the condition, with specific "caring" needs, as well as "family" needs (such as short breaks), coming later in the journey. (The idea of a "journey" also acknowledges the fact that carers seek support [including information, advice, social and peer support] from a wide range of sources, even where a Carer Centre is the hub).

Carers and workers identified a significant number of barriers and difficulties in gaining access to support. Although many of these were specific to local circumstances or individuals, or related, for example, to the policies of individual services (and they were not analysed quantitatively), they are worth noting here in relation to the potential actions of NCOs. These included:

• Difficulties in carers recognising themselves as carers.
• Difficulties in being recognised as a carer.
• Lack of awareness of carers among professionals and other services.
• Reluctance of some professionals to focus on carer issues (particularly in the NHS).
• Lack of joined-up working at a local and a national level, with apparent failures to signpost carers to the best forms of support from carer and non-carer sources.
• "Territorialism" between carer and non-carer organisations, and a lack of a shared approach.
• Lack of "single point of contact".
• Difficulties in assessing the accuracy of information on the internet, or in sifting through the volume on information.
• The presence of much information on some NCO websites which is not relevant to Scotland, leading to confusion, raised hopes and frustration.
• Differences in interpretation of apparently national policies.
• The "postcode lottery" in service availability.
• The sharp divide in support available between rural and urban areas, with a clear perception of an "urban" bias among NCOs and other types of national organisations.
• Failure to recognise the costs of being a carer in a variety of ways, including funding replacement care costs or acknowledging rural transport costs.
• Difficulties in securing advice and information about carer issues for specific communities, particularly BME communities.
• Lack of services for some groups, including, for example, young adult carers (now being addressed).

Consultation with carers

More than half of the carers who responded to the survey in the review recalled being asked for their views about carer issues (with one suggesting "too many times to mention"). Clearly, those responding to this survey could not be assumed to be representative of all carers on this issue. However, what it relevant is the range of forms of consultation identified by these carers. Among the carer organisations and public bodies cited as having asked carers for their views were:

• Care Inspectorate.
• Carer Centres.
• Carers Scotland / Carers UK.
• Carers Trust.
• Coalition of Carers in Scotland.
• Local authorities.
• NHS.
• Scottish Government.
• Scottish Social Services Council.
• Shared Care Scotland.
• The Scottish Young Carers Services Alliance.

A wide range of non-carer organisations were also identified who had asked for views about issues relevant to caring, including:

• Alzheimer Scotland.
• Capability Scotland.
• CHAS.
• For Scotland's Disabled Children.
• National Autistic Society.
• Scope.
• Support in Mind Scotland

A number of other local non-carer organisations were also identified as having asked carers for views relevant to caring. Again, these are too numerous and diverse to list here.

The issues about which carers identified being consulted were many and varied. The most common response, both in the survey and in the meetings with carers, was "general" carer issues, along with requests for feedback on services received (of which the most commonly mentioned was a short break).

Among the service-related issues were:

• The choice of courses available to carers.
• The issues which should be covered at carers' meetings.
• Means of reaching carers or communicating with them.
• Carer assessments.
• The contents of carer leaflets and other publications.
• How carers identify professional service providers.
• Emergency cards.

A number of examples were provided of carers being asked about wider, policy related issues, such as:

• The financial costs of caring.
• Time spent caring.
• The Carers' Charter.
• The impact of caring on health and well-being.
• The effectiveness of mental health support to carers.
• How to improve the recognition of the caring role.
• Consultations at a local and national level on specific policy developments, e.g. the Carers Card, proposals for hospitals and health services.

Some were related to specific conditions, or specific circumstances, for example:

• Experiences of caring for someone with dementia.
• Autism-linked resources.
• Disability issues.
• Mental health issues.
• Transitions for young people.
• Caring for a disabled child.

Carers also identified a range of legislation, and both local and national policy issues, such as:

• The Carers Legislation.
• SDS.
• ILF.
• Welfare reform.
• GIRFEC.
• Children and Young People's Act.
• Local care plans.
• Local carers' strategies.

From material gathered from the survey, from the meetings with carers, meetings with NCOs and from documentary analysis, it was clear that there were a wide variety of means by which carers were invited to make their views known. Among those identified were:

• Questionnaires circulated by post and by e-mail.
• Via carers assessments (with some noting that social work departments were assumed to analyse and assess these for trends and issues).
• Questionnaires for completion online.
• Carer Forums, focus groups, reference groups etc., some regular and constituted, some ad hoc (with some noting specifically a distinction between adult and young carers)
• Participation in planning groups relating to services, or through, for example, local planning structures such as CHCPs or specific carer planning groups.
• Events, both locally and nationally.
• Requests through social media.
• Individual contact by workers or managers.
• Feedback forms after service delivery.
• Participation in research, by carer organisations, the Scottish Government or independent organisations, such as universities.
• Service evaluations, or, in a small number of cases, participation in inspections.
• General requests via emails or newsletters.

Some carer organisations identified having local structures in place to seek carers' views, including forums or panels which met regularly.

However, a range of constraints were also identified to carers' voices being heard. These included:

• Lack of time.
• Lack of funding to support carer engagement, including the costs of replacement care and transport.
• A reluctance on the part of carers to express their true views because they fear they might lose services, or otherwise be discriminated against.
• A perception that "equal partner in care" is only a true reflection of the situation when carers are not raising issues.
• A concern that only junior level staff, or local staff, ask for views, with senior managers not being exposed to them.

A number of carers and workers (and some NCOs) expressed a concern that carers were "being consulted to death", with a fear that they would say "no more." Paradoxically, other workers and carers suggested that there was too little consultation, and that carers were not seen as important.

There were mixed views of the means of passing views from a local to a national level. Interestingly, among the formal methods, the one mentioned most commonly was via the NCO to which a local organisation was affiliated, particularly the Coalition, but also the Carers Trust and the Alliance, and to an extent Shared Care and Crossroads. Also identified were more ad hoc means, such as conferences and requests for information. In a small number of cases, local organisations also identified making views known through local CHCP and other structures, or directly to MSPs or Scottish Ministers.

However, some of the carers and workers who took part in discussions as part of this research expressed concern that, in their view, issues did not appear to be passed from a local to a national level, or there was a lack of transparency in which issues were chosen to take forward, and a lack of feedback on the results. It was also suggested that some local carer organisations appeared to find it easier to have issues raised nationally than others. This was linked to some carer organisations, for example, having Board level representation on individual NCOs.