Carers’ experiences of support groups, support workers and respite care

This Talking Point is about the support carers said they received from carer support groups and charities, and through attending courses and workshops run by support groups and charities. This included getting information and advice, but also, importantly, making friends with other carers and getting peer support. Carers also mentioned receiving support for themselves in many different ways including from the person being cared for’s case manager, mental health unit, General Practitioner or mental health practitioner, seeing a psychologist themselves and through self-care (see also, Carers’ experiences of psychiatrists, counsellors and other mental health practitioners, Carers’ experiences of General Practitioners, Carers’ experiences of caring for themselves).

Most of the carers we spoke to had considered attending, or had attended, a support group. Carers often found out about support groups by searching for information on the internet, and a few found out about groups through articles in the press or word of mouth.

This section includes people describing their experiences of caring for loved ones who attempted to self-harm, which some people might find upsetting or distressing to read. All the material on this website is intended to support carers to develop a better understanding of these behaviours, and how to get help for the person cared for. If you need help, please visit our Resources and Information page which includes confidential helpline numbers.

Quick Links

What support groups offered carers
Support workers and carer consultants
Getting more involved with support groups
Temporary Alternative Care (respite care)

Katherine talked about how she first came across support groups in her area.

What support groups offered carers

Carer support groups could be a good place to find out information (see also Carers’ experiences of searching for information). Some carers gained valuable assistance with how to cope with some difficult aspects of being a carer, including instances when the person being cared for exhibited what they perceived as challenging behaviours.

Julie attended a few workshops run locally by a carer’s support organisation. They made her feel ‘more comfortable in what was happening’.

George described very useful advice he and his wife were given by a mental health unit on how to manage times when their son was threatening to self-harm.

What many of the carers we spoke to seemed to value most about support groups, however, was the opportunity to meet with and talk to other carers. This could be just about knowing there were others going through the same experiences. Bev observed, ‘It’s good to know that I’m not the only one’. Meeting others often meant, in Jeannie’s words, ‘sharing experiences’ and finding out how other carers, with ‘exactly the same … situation’ were finding ways to maintain ‘their own sanity and their own lives’. At a support group, carers could, Elena said, ‘talk, get things off their chest and not be judged for it’, and even ‘laugh about what [they were] going through’, Dianne said.

Rosemary talked about the benefits for her of being part of a support group.

Many carers talked about how just having someone to speak to who knew what they were going through, and who was prepared to listen could be invaluable. Until he found a support group, Rich had felt ‘very isolated and on [his] own’. Marta thought people at support groups were the ‘only people that [understood] what [she was] going through’, and that most carers ‘[coped] better … once they join[ed] a support group’. Alexia said meeting other carers through a support group was what had ‘kept [her] going until now’.

Kate talked about how useful it was to hear about the experiences of other carers, and compare them to her own.

Not everyone chose to attend support groups, which Lisa described as ‘not really [her] cup of tea’. Although Katherine found going to a support group and getting information was helpful, she said she went more to hear the ‘guest speakers’ rather than to take part in meetings where people talked about ‘the person that they care for’, which she ‘didn’t really like’. Kay, who regularly attended a carer support group, said she knew that support groups were not for everyone: ‘some people don’t like talking about it. It upsets them … and to listen to other people just depresses them’. Looking back, Tracey said she had probably been too ‘shy’ to attend a support group when she first became a carer: ‘it takes a lot of energy just to ask someone for help’. She thought ‘it’d be helpful for someone just to say, “I’m coming around”‘.

When Elena first went to a support group meeting she didn’t want to go back. It was some time before she returned and realised she had been ‘retaliating against what the future looked like’.

Tracey said, in hindsight, she could have benefited from attending a support group: ‘I probably needed more of a – just a group that understood or were going through similar feelings or anything like that than, than a single psychologist myself’. A few other carers, like Rowan, could not get access to support groups they thought would be useful, because they were too far away or the times they met were not suitable.

Support workers and carer consultants

As well as support groups, carers also mentioned individuals (support workers, carer consultants, outreach workers) who had given them support. Sasha had a carer support worker who she had trusted ‘immensely’ and who had been ‘supportive … but very honest’.

Christene, who cared for her daughter, husband and grandson, was introduced through her support worker to a mental health outreach worker who she described as a ‘wonderful’ lady who always found ‘time to talk’.

Alexia explained how, when she was very anxious, she had been helped by a ‘carer consultant’ and ‘support worker’ who had encouraged her to attend a support group.

Getting more involved with support groups

A few carers told us how they had got more involved with the support groups and become support group leaders, carer consultants (advocates) or volunteers. Alexia volunteered once a week helping people from diverse ethno-cultural and linguistic background communities. She worked with refugee-background people and asylum seekers who were often, in Alexia’s view, ‘scared to approach the system because of the stigma’ within their community, and who she said as a result preferred to seek support from a community centre, GP or counsellor.

Alex explained how he became Board Chairman for a mental health charity.

Temporary Alternative Care (respite care)

Only a few carers talked about trying to get some alternative care for the person being cared for when they needed to be away from home. Dianne said that a not-for-profit carer support organisation had helped her with respite care, including making it possible for her to have weekends away.

Rowan couldn’t get anyone to stay with his wife full time when he went into hospital for an operation. He worried for his wife’s safety while he was away.