What is a 'carer'?
A carer is someone who provides unpaid help and support to a family member or relative, partner, friend or neighbour who needs help because of their age, physical or mental illness, addiction or disability. Families and friends have always helped each other in this way, but in the last couple of decades, services have started to use the word 'carer' to refer to the person who gives such help.
The contribution carers make is now part of the government's policies. Carers save the government an enormous amount of money by doing what they do. In return, many carers can claim a Carer's Allowance, and most carers have the right to a needs assessment to see if they need any other support, such as proper respite or holiday (see 'Carer's assessment'). There are several laws about carers' rights and how they should be supported. But many carer organisations think carers need more help, and the people we interviewed agreed.
Caring for someone with a mental health problem can be particularly challenging for many reasons such as:
- Difficult behaviour or changes in the unwell person
- Finding support that suits carers and the person cared for
- The attitude others have to mental health
- Information sharing with professionals because of patient confidentiality
- Being a carer and from a minority ethnic community can mean people face discrimination or have difficulty in getting their cultural needs met.
This summary explains what it was like when people first began caring for someone.
'I didn't know I was a carer'
Many languages have no word for 'carer' the way it is used in the UK. Many of the carers said that at first they didn't know what being a carer meant, or they didn't think of themselves as carers. Some had only come across the word 'carer' once they got in touch with services, and for some that had taken many years - even up to 20 years.
It had helped some to be told that they were a carer and could access support and services.
Knowing how to care for people with mental health problems
People said there was a lack of information and preparation for becoming a mental health carer. Before becoming a carer, many had known little about mental illness. Some had had 'wrong perceptions' about mental health problems, for instance thinking people could just 'pull themselves together' if they wanted.
People complained that doctors, nurses or other people working in services had not given them much information. Some said what they got was 'too little too late', others said they had to 'go out and get it' themselves. In the end, people found helpful information in books, on the internet, via carers' groups or community centres.
Some carers pointed out the dangers of leaving the care of people with serious mental health problems to carers unless they were given the information and training they needed. One woman had told health professionals that 'you are trained in this and I am not', but still she did not get the information she needed to care. People commented that 'if you have a broken leg, no one would expect an untrained person to treat you.' Yet carers we spoke to felt they were given lots of responsibility with no other option than to 'pick it up as you go along'.
Several people had not known what to look out for, what to expect or how to address difficult situations when they arose. Others said they initially had not known how important it is for people with a mental health problem to stick to their medication. Others said they had not been informed about their powers as next of kin to stop some involuntary treatments. Still others felt information about benefits would have helped because they struggled financially.
Support services for new carers
Some carers said they had felt distressed and confused and had 'the confidence knocked out of me' when they first began caring. Many emphasised that having someone to talk to may be especially important for new carers, but said that at first they had not known where they could go for support.
If people don't see themselves as carers they probably will not look for carers' support services either. In many cases it had taken years before carers realised such services existed for carers and families affected by mental illness. Eventually, many got great support from a range of services (see 'Support from care services').
Some hadn't known where to turn for help. Others had felt dismissed by the health service and so had not looked for any further support.
Some had been helped by voluntary organisations; one woman said a health professional had told her about a voluntary organisation, 'otherwise I never would have known about it'.
For some, their greatest need had initially been getting support in their own language. One woman who didn't speak English and who did not read or write said it had been almost impossible for her to understand the system because 'being illiterate is like being blind', and 'you don't know anything if no one is there to help'. Many people said that when you are new to both caring and to mental health issues, 'you don't know where to begin' to find help.
For more information on becoming a carer see NHS choices.
Last reviewed February 2013.
Last updated February 2013.