Research from the Coalition of Carers Scotland shows that rights extended to Scotland’s over 800,000 carers through the Scottish Carers Act are still not being fulfilled five years later.

The report reveals that, despite carers across Scotland now being ‘far more aware’ of their rights than in 2018, many of those rights are not yet being realised in practice.

The charity is urging local authorities, health boards and the Scottish government to take responsibility for the implementation of the Carers (Scotland) Act.

This legislation came into effect in 2018 and enshrined some specific rights for carers, including access to a support plan, access to local support, and inclusion in hospital discharge discussions and in discussions about support and services for them or the person they care for.

In a survey of 1,278 carers across Scotland, 29% said they knew all about the Act and a further 38% said they had heard of it but were unsure of what it means.

Reflecting on the report, Shubhanna Hussain-Ahmed, Partnership Development Officer for Coalition of Carers in Scotland told healthandcare.scot:

“On a positive note, the findings highlight that carers are far more aware of their rights in 2023 than they were five years ago.

“However, carers have told us that knowing about their rights as a carer is meaningless if those rights aren’t been realised in practice.

“For example carers are still not being included in the hospital discharge discussions for the people that they care for, and are not always being offered support with their caring role by local authorities, even if they meet the local eligibility threshold.”

Hospital discharge plans

A total of 69% of respondents said they had some awareness of their right to be involved in the hospital discharge planning of the person they care for.

This is a steady rise from just 43% in 2018 and 57% in 2019.

Carers surveyed explained that they are ‘rarely included’ in discussions for the person they care for and hospitals do not appear fully aware of carers’ rights.

Coalition of Carers explains that exclusion of carers from such discussions can often lead to hospital discharge plans that do not account for the specific needs of the patient or carer.

This comes just a week after Carers Scotland revealed the health and social care challenges faced by carers, as it called for further investment in support to improve carers’ health and wellbeing.

A Scottish government spokesperson told healthandcare.scot that it full recognises the “vital contribution” of unpaid carers and the additional responsibilities they hold on top of other pressures.

The spokesperson added:

“To help manage this, every area in Scotland must have a local carer strategy and all carers have a right to a personalised plan to identify their needs for support.

“We’re also investing £88m a year in local carer support through local authority Carers Act funding. This includes local responsibilities to have a dedicated information and advice service in every area to help people understand their rights and the support available locally.”

Despite this, Coalition of Carers  found that many carers are waiting ‘far too long’ for an adult carer support plan to be completed.

Additionally, high thresholds for local eligibility criteria are preventing carers from accessing statutory support unless they are in crisis and carers are not being fully included in the design and development of local carer services.

In 2023, 60% of carers responding said they had some knowledge of their right to be involved in the planning of local services.

However, one carer reported that “information is not filtered down or shared widely, and we haven’t been well represented in groups” and their local authority often makes decisions about carers’ support that seems to deliberately exclude carers.

Making rights a reality

In its report, Coalition of Carers calls on the ‘duty bearers’ across Scotland to take more responsibility for carers’ rights – including Scottish government, health boards, local authorities and organisations commissioned to support carers.

A government spokesperson said awareness-raising work is ongoing not just for carers to recognise themselves, but also to improve the understanding and response of the health and social care workforce of their unique needs:

“Our national marketing campaign helped more people recognise when they are in a caring role and how to access support and we have also funded NHS Education for Scotland to develop training modules for the health and social care workforce, to help them to identify, include and support unpaid carers. We expect those to be launched by the end of 2023.”

The report highlights that a human rights-based approach to supporting carers will improve the implementation and enacting of carers’ rights.

It says this can be achieved through building participation and accountability, embedding non-discrimination, equality and empowerment into policy and practice and ensuring support is aligned with legislation.

Ms Hussain-Ahmed told healthandcare.scot that a growing understanding among carers of their rights is great progress, work must extend beyond awareness alone:

“We need to do more than just inform carers of their rights, because that in itself is not enough. We need to also work with local authorities and health boards to help them understand the vital role that they play in upholding the rights of carers.” 

“As part of the recommendations in our report we are encouraging local authorities, health boards, and Scottish government to acknowledge their role when it comes to carers’ rights, and to take responsibility for respecting, protecting and fulfilling the rights of carers.”

Read more: Carers facing full force of health and care crisis; Over a million unpaid carers going unsupported; Outstanding questions stall NCS scrutiny; Carers in ‘devastating' financial hardship; Women's Health Champion: progress in primary care

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