Raising expectations for unpaid carers and young carers living with a long term condition or disability

A lived experience perspective is needed to develop services and amplify the voices of unpaid carers of all ages in Highland.

It is likely that you, or someone you know, will be an unpaid carer at some point in your life. The number of unpaid carers in Scotland is going up, the State of Caring in Scotland Report 2023, highlighted that currently there are approximately 800,000 unpaid carers in Scotland.

In Highland, at Connecting Carers, we have seen an increase in the number of people with a disability or long-term health condition who are also unpaid carers. Currently 24% of all the unpaid carers registered with us identify as having a disability or long term health condition.

This means there is a huge number of people who are juggling aspects of their own lives, caring for a loved one, and coping with all this alongside managing their disability or long-term condition. Unpaid carers are reporting to us that they are feeling additional pressures emotionally, physically, financially, and socially. It is generally reported that being an unpaid carer and balancing health needs can be difficult. We are hoping that both adult and young carers with a disability or long term health condition will share their views, expectations, and experiences with us. Because, when connecting other organisations, councils, and the NHS if we have a better understanding of the experiences of unpaid carers who have a disability, it will enable us to better amplify the voices of unpaid carers in Highland and work towards developing services that better meet their expectations.

This has raised some questions for us, which only unpaid carers living with disabilities and long term conditions can answer:   

• How does being a Carer impact on your ability to manage your own disability or health condition?   
• How does your own disability impact on your ability to manage your caring role?
• What are your expectations?

The relationship and combined impact of being an unpaid carer and managing a long-term condition or disability do not always, if ever, get considered in a joined-up way. The Carers (Scotland) Act 2016, and the duty to offer Adult Carer Support Plans have been a step toward hearing Unpaid Carers voices and offering an opportunity to explore the carers specific needs and access to help. There is always room for more improvement, and by sharing your views and experiences it will help services live up to your expectations.

Data about young carers and disability is sparse, our records suggest that at least 14% of the young people we work alongside in Highland have a caring role and manage a disability.  Is it too much to expect that young carers who have a disability or long-term condition are always offered the opportunity to discuss and agree their needs, and have action taken to support them? The duty to offer and complete Young Carer Statements remains with the local authorities, and when they are offered, completed, and well implemented, we might be able to raise our expectations and celebrate the support that young carers with disabilities are entitled to, offered, and choose to access.

This isn’t the picture we see now; we want to expect more for young carers and adult Unpaid Carers and we need your help. By sharing your views with us we hope to be able to amplify your voices and influence the people leading services in the Highland area. 

If you have experience of this and would like to participate in our research project, please sign up using the details below or send us an email.

We can’t do this without you. Sign up to share your views here.

If you want to find out more about the research or have any questions, please contact: research@connectingcarers.org.uk       

End of page.