National carers strategy: executive summary

2. Valuing, Recognising and Supporting Carers

Strategic outcomes

• Carers are recognised and their contribution is understood and valued by society.
• Carers' voices are heard and their views and experiences are taken into account in decisions which affect them.

Why this is important

Our health and social care system could not survive without the commitment of unpaid carers. People have provided unpaid care for family and friends since before there was a health and social care system. But the way our public systems work and interact has a profound effect on the lives of those who provide unpaid care and whether caring is sustainable.

Many carers have told us that fighting their way through multiple systems is an exhausting feature of their lives, which contributes to stress. Carers can spend a lot of time trying to navigate through the system to find the right service for the person they care for or the right support for themselves. Carers have also told us that social attitudes, particularly to roles often perceived to be for women, contribute to keeping caring invisible and undervalued.

The pandemic made all of these issues worse, and for many unpaid carers, it is likely that the effects of the pandemic will continue for some time.

The Scottish Government and others responsible for developing policy and planning and delivering support or services must learn from carers' experiences and knowledge to ensure that systems are fit for purpose at a national and local level.

At an individual level, genuine communication is the key to enabling choice. Professionals need to understand and value carers' skills and insights to ensure that support for both them and the cared-for person is as good as it can be. Effective collaboration with carers includes empowering them with information about the types of support available and choices over how it is delivered. However, it is important to recognise that some carers may find it difficult to properly participate due to their own heavy caring commitments and may be excluded, especially from more intensive carer participation. Encouraging the provision of practical support to facilitate carer participation should also feature in the range of measures to support involvement.

There are already many effective processes in place to support carers, but we know that particular aspects of caring remain challenging. We will build on the existing structures that work while addressing things that need to be improved.

"I've been caring for my husband who has a diagnosis of dementia for 3 years, no-one told me there was support for me – not the doctor or the nurse who comes in. I could have done with help from the Carers Centre sooner. It's good to have it now but I've hit crisis and it's hard to pick myself up."

How we will achieve this

1. We will make it easier for people to recognise themselves as carers and to access support and advice.

2. We will foster a culture shift towards greater recognition and valuing carers and a connected approach to carer support across government by: connected leadership in the delivery of this strategy, ensuring carers issues are represented in the review of the National Outcomes.

3. We will update the Carers' Charter to reflect carers' rights to information and advice; new rights for carers of people with terminal illness; and, subject to Scottish Parliament approval, the right to breaks from caring.

4. We will support local carer centres to build capacity and ensure all carers can access consistent and up-to-date information.

5. We will keep the need for further national communications campaigns under review.

6. We will ensure that policy is informed by lived and living expertise, by working with carers and carer organisations to ensure carer voices are represented and heard in national policy making, including in shaping the National Care Service.

7. We will continue to support the Carers Parliament to engage carers in policy making and ensure their voices are heard by decision-makers. We will engage with carers to shape future Parliaments.

8. We will continue to support national work to engage, raise awareness and support carers' voices to be heard across all relevant issues.

9. We will involve carers through the Social Security Experience Panels and Social Security Scotland research, including the Client Survey and the Client Panels.

10. We will continue to support the Carers Collaborative and draw on reports and use this knowledge to inform future activity.

11. We will continue to prioritise the enhancement of carer involvement in local strategic decision making under the current system. Providing carers with support and access to national training events remains a primary focus of this work.

12. We will also continue to collaborate with third and independent sector bodies that enable carers in their role within integration authorities.

13. We will ensure that unpaid carers are involved in planning support and services under a future National Care Service through their involvement in co-design activity.

14. We will continue to work with partners and people with lived and living experience to make sure that our social care services work for everyone, including ensuring support for carers becomes more accessible and consistent.

15. We will continue to support improvement work to ensure health and social care professionals are aware of their duties to involve carers and have the skills and resources they need to work together as equal partners in care.

16. We will ensure that the Independent Review of Adult Social Care recommendations on effective carer involvement are delivered as a key element in a NCS.

17. We will continue to fund Healthcare Improvement Scotland (HIS) and NHS Education for Scotland (NES) to work in partnership and explore what 'involvement' in hospital discharge means to unpaid carers and what 'good practice' looks like.

18. We will improve the involvement of carers in decisions where the cared-for person has mental ill health.

19. We will respond to any recommendations of the Mental Health Law Review for improvements to the experience of unpaid carers, including young carers, within mental health.

20. We will update the Code of Practice for continuing and welfare attorneys to reflect changes in the legislative environment, taking into account UNCRPD as well as recent case law.

"I do feel listened to on the whole but sometimes I still feel that people just don't get it – how hard it is – it's exhausting."