The role of family, friends & carers

Support from family, friends and carers

Not everyone had supportive family or friends they could rely on. Many people, however, described the importance of receiving support from family, friends and carers and said that they would struggle without it: ‘because I’ve got a good family it helps a great deal’. They talked about the need for people with mental health problems and professionals to be open with families and to involve them in care (see ‘Messages for professionals about mental health‘). As one man said, it’s important to recognise that they are trying to help (see ‘Messages for others about mental health‘).

He says his wife helps with practical things and that trying to manage without her would be a…

Age at interview 37

Gender Male

Age at diagnosis 37

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One young man was pleased to have been able to stay at home with his family, rather than be admitted to hospital, because he felt that his family cared about him, whereas hospital staff might not.

He says that being cared for at home by your family is best for young people, although he says…

Age at interview 21

Gender Male

Age at diagnosis 18

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Some people had a particular family member who was their carer, either a brother/sister or husband/wife or in a few cases, a son or daughter. Others talked about people who gave them support but did not call them carers, including parents, siblings, spouses, in-laws, friends and children.

Some described family, friends and carers providing support and care when they were unwell. This often included practical help with day-to-day living – anything from shopping, cooking and opening the post to personal care. Some also helped with childcare. Even children took on some of these daily tasks when their parent was unwell, including one 12-year-old who ‘would cook and feed the siblings, feed her father, and give me a shower in the evening’.

She describes how her brother looked after her when she was unwell and asks other families to…

Age at interview 60

Gender Female

Age at diagnosis 40

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Describes how her daughter’s role as her carer began when she was 11 and has changed over the years.

Age at interview 42

Gender Female

Age at diagnosis 34

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One woman had experienced some difficulties with her family in the past so her friends were her main source of support, helping her to get through periods of psychosis.

Dolly’s friends with experience of mental health problems help her to challenge feelings of…

Age at interview 36

Gender Female

Age at diagnosis 21

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Carers and others were also there to listen and give advice, and sometimes acted as a distraction from feelings of depression, worry and anger. One woman said her husband ‘cheers me up when I’m down in the mouth’.

Many people described how family members and spouses got involved in some way with their mental health care, including attending meetings. In some cases, this involvement enabled them to access care. One man said he gained access to support from mental health organisations through his wife. Others relied on someone to translate for them so that they could access mental health services. One woman felt that ‘the fact that [my husband] was White English made a difference to the treatment that I received’.

The presence of her white English husband meant staff treated her better.

Age at interview 56

Gender Female

Age at diagnosis 48

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She says it’s difficult to communicate with her GP without her children to interpret for her….

Age at interview 48

Gender Female

Age at diagnosis 46

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Family members often got involved in care by, for example:

  • Spotting early symptoms when someone was becoming ill again
  • Helping to follow instructions from doctors by ensuring medication was taken and monitoring behaviour
  • Restraining relatives when they became unwell
  • Making contact with doctors
  • Being involved in sectioning a relative

One woman who’d had difficulties with her family said, ‘My dad wanted me put in a residential care home because I couldn’t look after myself’. Another man had to get his wife’s permission before he was allowed to view his medical records (see ‘Getting information‘).

She says her brother helps with shopping and cleaning, and makes sure she goes to see her…

Age at interview 38

Gender Female

Age at diagnosis 31

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Several people talked about protecting each other from getting upset or worried. One man was the eldest son in his family and was the head of the family so it was his responsibility to advise them when they had problems but he found this stressful. He said his family and friends tried to protect him from bad news or anything that might worry him and trigger his depression. Other people said they tried to protect their carers when they felt they were becoming unwell, sometimes not telling them how they felt. One woman said she didn’t tell her sister-in-law about her severe depression because she didn’t want her in-laws to find out, ‘maybe she will tell around, which I don’t want’.

Marlene feels the only person she can talk to is her sister [see Interview 22]; she says she…

Age at interview 38

Gender Female

Age at diagnosis 24

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One man involved his wife in his appointments with his psychiatrist from the very start of their relationship so that she would always feel comfortable.

He says he was open with his wife from the start of their relationship; he told his psychiatrist…

Age at interview 50

Gender Male

Age at diagnosis 20

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The effects on carers and relationships

The caring relationship affects the carer, the person being cared for and their relationship (see the Mental health: ethnic minorities carers’ experiences). People used words like ‘horrendous’, ‘frustration’, ‘suffer’, ‘blame themselves’, and ‘depressed’ to describe what they thought their carers and family experienced. One woman said her 13-year-old daughter wanted to ‘help other people’ with mental health problems. Another felt her children’s education suffered.

A few people felt it would be difficult to have a partner when you have mental health problems, or felt that their relationships had suffered. Others, however, described having a good relationship with their spouse, including one man who said, ‘Amazingly, my wife stayed with me’ through his periods of psychosis. Some people described their fear of being left alone and becoming reliant on their carer, comparing themselves to a child following a parent. One man, a former mechanical engineer who used to supervise others, found this very difficult, ‘you start feeling like a baby’. Another man talked about his fear of hurting the family (See Lorenz’s story).

He describes the effects on himself, his wife, and their relationship. (Audio in Punjabi, text in…

Age at interview 55

Gender Male

Age at diagnosis 54

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The mothers who described their children caring for them expressed guilt about their helplessness and reliance on their children for care.

Having no support

A few people we talked to said that they got no support at all from anyone. Some didn’t want to ask their friends or family for help, including one woman who said she didn’t ‘cling on to’ her family. Many of the people we interviewed had experienced difficulties with their families and this often meant that they received no support from them, though some got support from other sources. Migration often led to separation from immediate and extended families, and this could lead to additional isolation. One woman felt her family were ‘fed up’ with her and another felt she had less support living in the UK than she would have had near her own family in Pakistan. Others described feeling that they had not been able to regain their relationship with their parents after being separated from them in childhood (see ‘Views about causesm of mental health problems: social & environmental factors‘). Showing understanding was important to many, and those who didn’t get support from family and friends often put this down to their lack of understanding and sympathy. Some people described the lack of support they received from relatives and ‘fair-weather’ friends. This absence of support led one man to attempt suicide.

He says people don’t understand depression and he didn’t get the support he needed from family,…

Age at interview 64

Gender Male

Age at diagnosis 45

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She received no help from her relatives when she needed them and there was no-one to look after…

Age at interview 42

Gender Female

Age at diagnosis 32

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Being a carer

Many of the people we interviewed also had caring responsibilities – some had children living with them, while others had a family member or spouse with mental health problems. Find out more about Ethnic minority carers’ experiences of mental health. Anton was also interviewed about his experiences as a carer. For some, these caring responsibilities gave them a reason to live, ‘the way I dealt with that fear of harming myself was I put all, my younger daughter, she was only eight, her photos up in front of my bed and I kept saying to myself I am responsible for this child, I can’t do that’.

Discrimination due to mental health

Research suggests that people who are seen to be 'different' or 'threatening' are more likely to experience discrimination and be treated negatively. This is true...