The work carers do is part of the UK government’s plans for caring for people with mental health problems in the community. Most carers agreed that relatives are in a good position to look after people with mental health problems. Some even said that ‘if all carers said ‘I’m not going to care anymore,’ the NHS would go bust overnight’. People thought it was in everybody’s interests (services, service users and carers) for carers to get the right support to do their work properly. As discussed below, carers offered advice to those writing carer policies to ensure their conclusions were good ones.
The government knows it needs to work in partnership with carers. The carers we spoke to said that for this to work well, those planning services need to talk to people in the community in a meaningful way and recognise carers’ experience and their wealth of expertise. Some felt that people from minority ethnic communities are less likely than others to be listened to properly.
If carers are going to be partners in care they need information and support.
However, the carers we spoke to felt that they are ‘not always valued’ by the government and ‘often forgotten about’ by local services. Some said that carers don’t have much of a voice in policy decisions. One carer thought a national register of carers could help to get ‘the work we do recognised’ and included in strategic thinking.
There need to be well funded carer organisations working for carers and 24-hour support services…
Carers need culturally appropriate services (see ‘Services and minority ethnic communities’). Some carers thought the government and local services were not sensitive enough to cultural differences. And some people said that the government’s strategies for carers should devote a section to looking at the needs of different communities.
Some said that having more people from different ethnic communities working in services could help. Others said jobs or services aimed at supporting ethnic minority carers should be ‘mainstreamed’ (be made permanent and paid for by public services).
Listen and learn from carers experiences
People recognised that it can be difficult to understand how it is to be a carer ‘unless you’ve been in the situation’. To help those in charge of policies and services to understand, the advice from carers was simple: Listen to us!
Really careful listening is needed to understand the work carers do (played by an actor).
Some carers said they felt those working in services don’t always recognise that while for a worker someone’s ‘case’ is part of their day job, for carers ‘a case’ ‘is our lives” ‘we’re people, you know, not papers’. Sometimes carers said they felt ‘run over’ by people in authority. And people said some professionals need to learn how to communicate better with carers from different cultures.
People said that those in charge of policies and services need to understand how caring responsibilities affect carers ’24/7′ and that services need to be flexible enough to address ‘real life issues’ as they arise. The timing of ward rounds suiting staff needs rather than carers, and the need for 24 hour support and for that support to be culturally appropriate were some of the examples mentioned.
Raye describes how caring for someone with a mental health problem requires time and expertise,…
People also said that if carers and workers have regular communication (not just meeting during a crisis), they could build up trust and be much better at dealing with things as they come up. Some suggested regular meetings, or regular reports from hospitals or mental health teams to carers.
Miriam wants carers and health professionals to have regular contact from day one.
One carer said that how services engage with carers’ views should be recorded and checked as part of staff appraisals.
She thinks the way staff listen to carers should be part of routine monitoring of their work.
The need for education and raising awareness
The government expects carers to do a lot of care in the community. Some described this as a ‘half-baked idea’ because carers are ‘catapulted’ into caring without being trained how to look after people with mental health problems.
Just as doctors need education to treat a broken leg, carers need education and support to look…
Some people said it is ‘common sense’ that new carers need to be educated about mental health issues, how to cope and how to access services. Simple things such as information about which symptoms to expect and how to address them, people said, could ‘go a long way’ (see ‘Carers’ advice for support and information services‘).
Some emphasised that carers should help educate each other (and professionals) because they can give advice based on real life experiences. Others recommended more outreach work to let people in different communities know more about mental health and ‘how the system works’.
Many carers said that to tackle mental health problems, learning about it should be part of the school curriculum. Some said public awareness campaigns are needed to educate the public and to put the needs of carers on the agenda.
She thinks mental health issues should be part of the school curriculum.
Many carers believed that not enough money is being spent on mental health services and on supporting carers. The lack of hospital beds, long waiting lists and the short time professionals had to meet patients and carers were mentioned as examples. Some thought resources don’t reach carers because they are not ‘ring fenced’ and so they end up being spent on other things.
People also talked about how the carers’ allowance is not enough to cover the costs of caring. Although the money clearly did not motivate carers, many struggled to make ends meet and said increases in benefits would be a very effective way of supporting carers better.
Anton thinks the current carer’s allowance is inadequate considering what they do.
Benefits affect carer allowance which makes it hard for carers (recording in Gujarati).
Some people also noted that the government has a responsibility to look after the needs of all of the community. When people have contributed to their National Insurance all their life, the excuse of limited money simply isn’t good enough.