Advice for mental health practitioners

This Talking Point is about carers’ advice for mental health practitioners. It includes advice about how practitioners can better understand carers, and support them and their loved ones by building relationships with them. (See also Carers’ experiences of relationships with psychiatrists, counsellors and other practitioners and Advice for other carers.)

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Understanding Carers
Building Relationships

Understanding carers

Many of the carers we spoke to talked about the importance of mental health practitioners having an understanding of carers. They particularly wanted practitioners to recognise the knowledge they had about their loved ones’ wellbeing and condition, and their role in supporting (or limiting) their loved ones’ independence.

While many carers recalled particular practitioners who had shown an understanding of carers, these tended to be described as exceptional cases. A few carers talked about practitioners’ attitudes towards carers changing over time. Marta said that 20 years ago, many practitioners seemed to ‘blame’ carers for their loved ones’ condition. Similarly, Elena said ‘in the early days’, many psychiatrists lacked ‘understanding’ of ‘what it’s like for carers’, and Disability Support Service workers had regarded carers as ‘overbearing’ and ‘stopping’ the people they supported from becoming more ‘independent’. While she felt there had been a shift towards a more positive understanding of the value of ‘having carers on board’, others reported more negative attitudes. Alexia described how her son’s case manager called her ‘an overprotective mother’, while Julie recalled how her daughter’s psychiatrist told her that her own ‘anxiety’ was part of the ‘problem’ of her daughter’s depression.

Alexia admitted initially she had wanted to ‘protect’ her son and ‘not to let go’. However, she said this was no longer the case because she had gained ‘understanding’ of mental health issues through education.

Marta recalled how one of her daughter’s psychiatrists ‘would allow’ carers to ‘have their say’ in treatment contexts. But in her experience it had been more usual for clinicians not to want to ‘hear’ what carers had to say.

Many carers talked about practitioners’ understanding (or lack of understanding) of the situation of carers. While most carers said they understood practitioners were ‘busy’ and ‘overworked’, as Rosemary put it, Kay said many psychiatrists often seemed to lack an understanding of the impact of caring on the caregiver: ‘I think they don’t really know how upsetting and how hard it can be, and that [the person cared for is] not the same as what they used to be and it’s a big change, and you’ve got to try and accept it and do your best. I don’t think they understand how hard that is’. (See Impact of caring on relationship with person cared for.)

Compassion, empathy and a willingness to listen on the part of the practitioner were highly valued, and some carers gave examples of when they and their loved one had experienced these qualities. However, many described the majority of practitioners as behaving as though carers did not ‘exist’, as Rosemary put it. Christene said most practitioners in her experience didn’t talk to carers unless they needed to: ‘we’re the forgotten ones. We’re pretty handy to pick up prescriptions, take people from A to B in the car, but they just forget [about us]’. Rosemary said she would appreciate it if practitioners would make more effort to ‘understand what it’s like for me as well as for [son] … but if they can’t do anything, just being able to listen and make us feel as though we’re not someone with two heads’.

Laura advised practitioners to acknowledge ‘new carers’ and ‘show understanding’ and ‘compassion’.

Elizabeth called on practitioners to ‘understand’ that most new carers probably do not know anything about ‘mental illness’ to begin with. In particular she asked for them to explain the effects of medication and to discuss ‘recovery’.

Building Relationships

Many carers advised mental health practitioners to be more proactive about, in Mike’s words, ‘relationship building’. Some carers advised practitioners of the need for them to put carers ‘in the loop’, as Elizabeth put it, ‘right from the start’. Elizabeth suggested practitioners should take the initiative to find out from new carers what their first-hand knowledge of their loved one’s situation was: ‘They’re the ones that have been dealing with the situation probably for years … there must be something they can use for treatment’. Sasha advised practitioners to let carers know when their loved one went home from hospital what the ‘action plan’ for treatment was: ‘I wanted to have communicated to us … whether there was one … we need to know that the services are doing something’.

Mike thought the public mental health sector should recruit ‘positive’ people with ’empathy’. He said these qualities were necessary for ‘relationship building’ between practitioners, carers and their loved ones.

Kate thought she and her mother should have been more involved in her brother’s care and treatment after he went home from hospital.

Some carers advised practitioners and carer outreach workers to take the initiative to contact carers and their loved ones to offer them help rather than wait for carers to ask for it. Iris said she thought her son needed support workers ‘to come to him’ to ‘help him to get out’. Rowan advised about the need for early ‘intervention’ to ensure the wellbeing of carers: ‘the outreach workers can possibly pick up on if they know – if I’m feeling [depressed], how about you offer to take me for a coffee or something like that, because I’ll just need to get out of the house. Don’t take no for an answer’.

Tracey described how the expectation that carers should ask for help could ‘add’ to the ‘isolation’ of carers and their loved ones.

Rosemary’s son psychiatrist ‘opened the channels’ of communication between them. He told her he was ‘available’ if she needed to talk to him.

A few carers said practitioners taking the initiative to build relationships would better support carers and their loved ones to meet challenges related to continuity of care in the mental health system and social isolation in the community. Lisa linked her brother’s ‘recovery’ with his being able to build relationships with practitioners by ‘seeing the same health professionals’: ‘If you’ve got other people on board that know him, perhaps they’re able to predict and make better therapeutic decisions when it’s needed’. (See also Caring and the community and How to increase carers’ participation in supporting treatment decisions.)

Saskia called for practitioners to ‘build real relationships’ over a long period of time with people diagnosed with severe mental health problems like her sister.