Who cares for the carers? People dealing with mental health issues need extra support

Scott Aitken makes a plea for rights and recognition of those who help others

According to the Carers (Scotland) Act 2016, a carer is someone who provides care for another individual where this is not part of any paid employment or formal volunteering. The term ‘mental health carers’ is used for relatives and friends who support or care about people with lived experience of mental health problems.

Support in Mind Scotland provides services and support for people affected by mental illness – including carers – in areas across Scotland. We also campaign at a national level based on what our members tell us. In that vein, we carried out research on the needs and experience of mental health carers in Scotland in 2017.

Weknowthattheestimated759,000 carers in Scotland face a range of issues and needs common to all. Of course, different carer groups face different challenges – and government policy should reflect this.

Our key asks are rights, recognition and advocacy for mental health carers – along with the creation of a National Mental Health Carers Forum, supported by the Scottish Government and led by carers, to influence policy and speak directly to decision-makers.

Both Support in Mind Scotland and the Scottish Government recognise the positive benefits that caring can bring. However, particularly for those with a more intensive role, caring can lead to worsening health and a fragile balance between caring and other things in life. A majority of the mental health carers we spoke to indicated that they do not have a good balance – and less than one in three rated their health as good, compared to 75 per cent of all carers in Scotland.

Furthermore, Scottish Government research shows that 32 per cent of carers in Scotland believe their role has had a negative impact on their own health and wellbeing. Of those we surveyed, 80 per cent said their role has had a negative impact on their physical health and wellbeing – with more than 90 per cent saying caring has worsened their mental health and wellbeing.

Across Scotland, three in five unpaid carers are female. For mental health carers, this rises to four in five. Our survey showed that mental health carers are more than twice as likely to provide care for 35 hours or more each week compared to Scotland’s overall carer population.

When we think of carers, we often think of people supporting elderly relatives. However, onset of conditions such as psychosis and schizophrenia often begins in adolescence – meaning mental health carers provide support for many years. In fact, 84 per cent of mental health carers we surveyed have been caring for more than 10 years, with one in five for more than 20 years.

A staggering 96 per cent of respondents to our survey would appreciate additional support – with a majority requesting a significant amount. This finding, along with many others in our research, replicates findings from a Europe-wide study of menadult

tal health carers by EUFAMI. We are optimistic that the implementation of the Carers Act in April next year will help ensure those who want to continue caring are fully supported to do so – and we hope its effects will work regardless of the condition of the cared-for person.

Carers of all varieties may face their loved one being taken in to hospital due to ill-health. For mental health carers, this can be through detention, or “sectioning”, under the Mental Health Act – thereby adding legal complexities to an already distressing experience.

We therefore believe that mental health carers should have the right to independent advocacy, at least to begin with for those supporting someone subject to the Mental Health Act. Furthermore, having a serious mental illness increases the risk of unemployment. This is also true for mental health carers: 11 per cent of carers we spoke to said they do not work because of their commitments, with 70 per cent stating that their role affects the hours they work or can work. This is a 10-fold increase on the proportion of carers in Scotland who work fewer hours due to their caring role.

Just as those with mental illness face stigma, so too do mental health carers. Our survey show a contrast between mental health carers and Scotland’s overall carer population – and we want the Scottish Government to consider further research on this issue.

The needs of mental health carers aren’t more important than other carer groups – but they are specific. That’s why we must ensure they have access to specialist information, guidance and support and that they are afforded rights, recognition and advocacy. Scott Aitken, policy officer, Support in Mind Scotland.