Carers Legislation - Consultation on Proposals

Chapter 6 - Carer involvement

a) Service Design and Delivery

b) Care Planning and Support

Summary

This chapter discusses:

• carer involvement in planning, shaping and delivery of services and support; and
• use of carer expertise and knowledge by professionals.

Arrangements will be made under the Public Bodies (Joint Working) (Scotland) Bill for the involvement by integration authorities of both service users and carers and carers' organisations in the planning and design of services through the strategic planning and locality planning processes. We do not need therefore to duplicate these arrangements in carers' legislation.

However, since not all services of Health Boards and local authorities will be within the scope of integration, we propose to make provision for involvement by carers and carers' organisations in planning, shaping and delivery of services and support in relation to services outwith the scope of integration where carers have an interest.

We also propose to establish a principle about carer and young carer involvement in care planning for the people they care for and support for themselves.

Introduction

1) On a locality basis, it is clear that carers should be fully involved in the planning, shaping and delivery of services for the people they care for and support for themselves. The full involvement of carers in this way helps to deliver better quality services and support which are much more personalised and outcome-focussed.

2) The Third Sector too - carers' organisations - should be involved in an appropriate way.

3) Furthermore, at an individual level, the expertise and knowledge of the carer should be used effectively by health and social care professionals and by other professionals such as teachers, for example, in relation to disabled children.

Planning, shaping and delivery of services

4) As stated in Caring Together, the Scottish Government is committed to ensuring that carers are fully involved in the planning, shaping and delivery of services and support.

Information Point

One of the key principles of the voluntary sector short breaks fund is that there should be carer and service user involvement in the planning and delivery of the short breaks.

With regard to Better Breaks, funding should support the personalisation agenda, providing opportunities for carers and the children and young people they care for, to be at the centre of planning and decision-making about their short breaks. It takes a lot of work to ensure that this happens effectively and projects need to do more to ensure that this key principle is being met.

The evaluation of the first round of Better Breaks summarised the position well and has read-across to all carer and service user involvement:

'This principle could be viewed as 'work-in-progress' and in particular around the involvement of children and young people. Often it was limited to 'what the child wanted to do' at a session, usually from a menu of options rather than an inclusive model of working which put them at the heart of the project. However, some good examples did emerge. Conversely, some projects which were very focussed on involving children and young people in planning and delivery involved carers less.

The gold standard for personalisation would be for organisations to consider all the stakeholders and include them all in the planning, delivery and evaluation. In doing so, projects will be better able to anticipate and meet need alongside delivering lasting outcomes for carers and young people.^[45]

5) There has been progress in involving carers in strategic planning. The plans submitted for the Reshaping Care for Older People's Programme Change Fund demonstrated progress in many local areas but with more to do in some areas.

6) The integration of health and social care will result in meaningful carer and service user involvement in the planning and delivery of services and support.

Information Point

The Scottish Government is to require, through regulations, that integration joint boards and joint integration monitoring committees have representation from carers. Guidance on strategic commissioning will make clear that the commitment extends to involvement in the design and delivery of future integrated services.

7) The integration of health and social care will mean that all adult health and social care services must be integrated. There is also flexibility for Health Boards and local authorities to integrate other health and social care services (for example, in relation to disabled children) where they agree to do so. Services for disabled children covering education are not within the scope of the Public Bodies (Joint Working) (Scotland) Bill although, where health and social care services for children are being integrated by local agreement, there will be local protocols for an interface between health and social care and education.

8) Carers should be involved in the design and delivery of support for themselves as well as in relation to services for the people they care for. We therefore propose to make provision for carer involvement in the planning, shaping and delivery of services for the people they care for and support for carers in areas outwith the scope of integration.

9) We also propose to make provision for involvement by carers' organisations in the planning, shaping and delivery of services and support falling outwith the scope of integration.

Carer involvement in care planning and support

10) Caring Together makes clear that carers are equal partners in care. Some of the work commissioned by the Scottish Government also uses this terminology. The "core principles for working with carers and young carers" developed by NHS Education for Scotland (NES) and the Scottish Social Services Council (SSSC), EPiC (Equal Partners in Care)^[46] states:

'Carers have a unique role in the life of the person they care for. When we are planning and delivering care for that person, it's important that we involve their carer. They have valuable knowledge to contribute and any decision will have an impact on their caring role. Carers, the person they care for and workers from health and social services should work together as partners to achieve better outcomes for all involved.

Carers have the right to play an equal and active role in care planning and decisions. This does not mean that all carers are the same or that the caring is shared equally. Every carer has a different role, but the same right to have the support and information they need and to be involved as they choose to be.'

11) The general principles set out in the Social Care (Self-directed Support) (Scotland) Act 2013^[47] give expression to the full involvement of carers in the assessment of needs for support and the provision of support for themselves. Local authorities must collaborate with people in relation to assessment and the provision of support. A person must be provided with reasonable assistance in order that they can express their own views about the choices available to them and make an informed decision about their preferred choice. The principles apply to local authorities' social welfare responsibilities (the provision of care and support) for both adults and children.

12) The general principles in the SDS Act fully embrace what we would like to achieve in relation to carer involvement in their own assessment and decisions about support to themselves under the SDS Act. Moreover, existing legislation^[48] also provides for local authorities to take account of the views of carers in the assessment of service users, both adults and children before reaching decisions on the services to be provided. The aim is to ensure that the care package meets the wishes and needs of both the cared-for person, and their carer as far as possible.

13) We propose that carers' legislation includes a principle about carer involvement in care planning for service users (subject to consent) and support for themselves in areas not covered in existing legislation.

Young carers

14) Young carers tell us that they sometimes like to be involved in the planning and delivery of services for cared-for people and support for themselves. However, their overriding concern is that their views are taken into account by professionals when decisions are made about the person they care for. This mostly, but not exclusively, applies to young carers aged from 14 to 17. Young carers have advised Ministers and local authority and Health Board representatives at the Young Carers Festival that they sometimes feel that health and social care professionals do not understand them. They also say that they are not always provided with information which they feel would not breach any confidentiality requirements. Nor have they been asked for their views on the care of their parent when they have been the sole family carer. We have sought to address this in part by introducing a pilot for a Young Carers Card which is now operational in five Health Boards areas with further expressions of interest from another three Health Boards.

15) The principles set out in the SDS Act apply to young carers in their role as providers of services. The existing provisions about taking account of the views of carers in the assessment of the cared-for person also apply to young carers.

16) We propose that carers' legislation includes a principle about young carer involvement in care planning for service users (subject to consent) and support for themselves.

17) We want to take views with regard to young carer involvement in the planning, shaping and delivery of services for cared-for people and support for young carers. We also see every reason for young carers to be involved in projects, institutions and services which make the most of their experiences. One such organisation is the Scottish Youth Parliament where there is young carer representation.

What Do We Want To Know From You?

Consultation Questions:

Question 14: Should there be carer involvement in the planning, shaping and delivery of services for the people they care for and support for carers in areas outwith the scope of integration?

Question 15: Should we make provision for the involvement of carers' organisations in the planning, shaping and delivery of services and support falling outwith the scope of integration?

Question 16: Should we establish a principle about carer and young carer involvement in care planning for service users (subject to consent) and support for themselves in areas not covered in existing legislation?

Question 17: What are your views on making provision for young carer involvement in the planning, shaping and delivery of services for cared-for people and support for young carers?