This Talking Point is about carers’ experiences of the support the person being cared for received from psychiatrists, counsellors and other mental health practitioners, and the support and respect these practitioners gave to carers. It also covers the support carers themselves received from their own GP, psychologist or psychiatrist. To find out about information carers received from mental health professionals, see Carers’ experiences of searching for information and Carers’ experiences of General Practitioners.
All of the carers we spoke to talked about positive and negative experiences of seeking support for the person being cared for from psychiatrists and mental health practitioners. Some had found psychiatrists who worked well with the person cared for and communicated effectively with them as carers, while others had the opposite experience. Some also talked about seeking support for themselves from counsellors, psychologists and psychiatrists.
Quick Links
Carers’ experiences of support from the person being cared for’s psychiatrist and mental health practitioners
Being involved in consultations with the person being cared for’s psychiatrist
Carers’ experiences of the approach of psychiatrists and mental health practitioners towards them
Support for carers from psychiatrists, mental health practitioners and counsellors
Carers’ experiences of support from the person being cared for’s psychiatrist and mental health practitioners
Many carers talked about good relationships they had with the person being cared for’s psychiatrist. Elizabeth said there was a good ‘flow of information’ between her and her son’s psychiatrist and that she felt ‘calm in his presence’. Dianne’s son had once had a private psychiatrist who she could ‘ring up anytime’. Katherine’s son saw one psychiatrist for 14 years who she said ‘managed him well’ when her son ‘didn’t want to know’ about his ‘illness’.
Kay said her son’s psychiatrist was ‘very good’ and helped him change his medication.
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The psychiatrist we’ve got now is very good, we’ve got a new one, and what I liked about this psychiatrist was [that] my husband thought [son] was overmedicated, and he said, “He can go to a place where it’s monitored to go off the medication – take him off the medication”. You can’t do it at home on your own. You’ve got to go to somebody, to rehabilitation, to have it monitored.
Well, we did that and it’s been very successful because he’s come off the drug called lithium and it’s been very successful. But I think it’s good if you can find a psychiatrist that does change the medication a bit. [The person being cared for] can be on the medication for years and years and just kept on that same medication when maybe they don’t need so much.
Elizabeth described calling her son’s psychiatrist when she thought her son had stopped taking his medication. The psychiatrist encouraged him to take it, which meant Elizabeth felt she had ‘backup’.
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It’s that trick, you know, he doesn’t always tell me when he’s not, when he’s going off the tablets or not. You’ve just got to be aware that every now and then he will go off his tablets for some reason. Sometimes it’s just a start, where he just sort of forgets to take one and he suddenly feels, ‘Oh, this feels all right, because I’m getting a bit high, that’s all right, I don’t need these tablets after all’. So that sort of thing.
And when I was able to ring up the psychiatrist and say, “Look, I’m not sure what’s going on”, and he was able to either – and occasionally he would talk to my son and say, “Hey, come on, what’s going on, you’re going to have to go up these tablets [sic], and you know you don’t want to have too many tablets”. Because his thing was always, “I don’t want to have so many tablets”. And, “Oh, you’ll have to have more if you don’t keep up with it”. So just sometimes a phone call was enough. It was enough, and then he’d make an appointment to go and see him later.
So there was a process, there was a structure in place?
Yes. I felt that I had the back-up, very much so. Not for the everyday things, but for in general, yeah, I felt that I had some structure, when I had this psychiatrist. And again, it’s private health, because, you know, you couldn’t afford it without private health. If I didn’t have private health, it would have been very difficult.
Some carers were concerned, however, that the person being cared for was not getting enough support, or the right support, and said levels of care varied between practitioners. James said, ‘some … try harder than others’. Alexia felt ‘devastated’ by the lack of ‘support or follow up’ when her son left hospital and ‘hit rock bottom’. Alex’s daughter’s psychiatrist dismissed his concerns that she had ‘anorexia bulimia’, and it was her GP who eventually referred her for treatment in hospital. Some carers, particularly those in regional areas, said it was difficult to get access to a psychiatrist when they needed it (see also Carers’ experiences of hospitals and mental health units).
Jeannie, a regional carer, thought her son might have ‘borderline personality disorder’ but could not get a psychiatrist to ‘even assess him’. She said she didn’t know where the ‘help … that he needs’ would come from.
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I don’t know where the help’s going to come from, [interviewer]. I mean, I try not to be cynical. I try to be positive but I’m a realist and I just don’t know where the help for him, that he needs, is going to come from. And my understanding is that if he does have borderline personality disorder and having read a fair bit about it, I wouldn’t be surprised if that’s what it is.
However, I need to stress that we don’t have a diagnosis. But I wouldn’t be at all surprised if he’s got borderline personality disorder. My understanding [is] that the treatment of that requires weekly psychiatric counselling and psychological counselling for a period of at least two years. Well, if you can only get six treatments from a psychologist, from the doctor, under a mental health plan, where is that going to come from?
If you can’t get a psychiatrist to treat – to even assess him, to diagnose him, how are you going to get a psychiatrist to treat him? I mean, you can’t see one once a month. You can’t see one once every six months.
A few carers, like Laura, a new carer, said they did not fully understand ‘how the public system work[ed]’. Sasha similarly observed, ‘psych services … now can ring us and give us information … a while back they couldn’t … It’s all very confusing’. James said he had met lots of psychiatrists in connection with his son’s care and that, as a result, he found it was ‘difficult to know just who was dealing with what’.
Bronwyn found it difficult to get her son’s case manager to talk to a psychiatrist about changing her son’s medication when he went ‘right downhill’.
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He was having monthly injections when he came out of hospital but the last two or three months he’s gone right downhill. He was on top of the world, he said he was excited and happy, excited and looking forward to the future and then he found out that the jobs that he thought he had in place weren’t available and he just took a dive, complete dive. So I got him to take the tablets. I tried to get in touch – I rang the case manager, I said, “Can he take, can he have his injection increased?” He said, “I’ll have to talk to the psych, in the meantime can he take tablets”.
So he took the tablets for a while, got himself back on board, went off them, then went down again. So now he’s – so I’ve rung again, “Can we have the injection increased because that doesn’t put on weight?” “Yes, but I need to see the psych”. So I think for about three months I’ve been trying to get them to talk to the psych so we can have – because this is a dosage that I’ve basically just put him on because I could see he was getting really sick.
So he was having the injections, he had some tablets left over from when he was on them, so I rang up and said, “Can I put him on these tablets?” “Yes”. But that was about – that’s been going on for about three months now, and he really needs to see a psych so he can have his medication properly adjusted. So I don’t know whether he’s taking too much or what, but they’re just not available.
How do you think that carers can be supported to help their loved one achieve what they see as recovery in their own life? What kind of supports do carers need to have in place?
Right, [carers] need access to the doctors, the clinicians. We need access, yeah, we just need to be able to consult and discuss things with the doctors. That’s what I’m frustrated about now. I can’t get any – this medication needs to be dealt with because while he’s taking that medication he’s putting on more weight and that creates other health issues. So you’ve got more things to worry about. So I want to be able to discuss with them. So you just need to be able to get to them.
A few carers, like Alexia, mentioned times when they felt the person being cared for desperately needed help, but the mental health practitioner they turned to did not agree: ‘[my son was] relapsing and [the case manager] used to tell me, “I just talked to him and he sounds all right”‘. Delays could also get in the way of carers getting the help they needed. Laura’s husband’s psychiatrist prescribed a change in medication but the GP said he had not received the letter about this change. Laura thought ‘the medical staff just [could not] see how important it [was]’.
Being involved in consultations with the person being cared for’s psychiatrist
Most carers thought it was important for them to be involved in some way in consultations between the person cared for and his or her psychiatrist. Many carers told us that psychiatrists often met with their loved one for only a short time, and there could be weeks or months in between visits. A few carers mentioned that the person cared for tended to say he or she was, as Elizabeth said of her son, ‘perfectly fine’ during consultations. According to some carers, like Iris, psychiatrists ‘seemed to accept whatever [the person cared for] said’ and did not take time to either seek out or take the carer’s view into account.
Some carers said they had not been involved in consultations with psychiatrists, and that they had not been consulted about the treatment options of the person being cared for. While a few carers attributed this to issues around privacy and confidentiality, the Mental Health Act 2014 (Vic) (section 346(g)) enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, and section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided. (See also How to increase carers’ participation in supporting treatment decisions, Advice for other carers and Advice for mental health practitioners).
Although
Julie and her husband did attend one family meeting with their daughter’s psychiatrist, Julie received very little information about what was discussed between her daughter and the psychiatrist after that.
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What made it hard as well was that the privacy issue* with the psychiatrist – so we did have a couple of sessions with the psychiatrist as a husband and I and my daughter. And where he was, the psychiatrist was trying to get some of our family background and a bit more information so he could try and help her. So we participated in that. But we got very little feedback from the psychiatrist at all. And he couldn’t really – I know, there’s privacy issues in that he couldn’t tell us what she was saying to him.
But we found it very difficult during that period of time that we didn’t know what was going on. We didn’t know whether it was something that we were doing wrong, [or] what we could do to help her. And the psychiatrist was quite unhelpful. And even when and I would try and at least have a couple of minutes’ conversation with him. Because here’s a 16 year old who is in our care, we want to know what we can do.
Note: This website does not endorse this interpretation of the law pertaining to disclosure of health information, which was this carer’s understanding at the time of the interview. The relevant section of the Mental Health Act 2014 (Vic) is section 346(g), which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, and section 346(h) which enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.
Some carers were allowed to attend consultations at the person cared for’s request, and a few carers described how they had communicated informally with the person cared for’s psychiatrist.
Mike said he trusted his wife’s psychiatrist. This meant Mike felt comfortable to occasionally send him an e-mail before his wife’s appointments to offer feedback regarding Mike’s perspective on how his wife had been feeling.
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I have become more involved when you say, in terms of her psychiatrist, I can communicate with him, send him an email. To tell you the story, I mean he actually said to me, “I’m doing this medication change” just after [daughter] was born. “And if it doesn’t work you can call me a dickhead”. So I can actually call him a dickhead [laughs] now because – but it was only joking – yeah, it didn’t work.
And he’s – I trust him. He seems to be a good chap and he’s very honest and he explains to me as best as he can without divulging any, you know, patient-doctor privacy* or whatever because he knows how it affects me. So before [wife] goes to the doctors if I feel that there’s something wrong and I feel sometimes that [wife] may not tell him everything, I just write him an email and say look [wife]’s been doing this, she’s not sleeping well.
And the sleep is the key, if she doesn’t sleep well it just affects her whole psyche and the medication sometimes doesn’t allow her to do that. She’ll have night sweats. Or she won’t be able to sleep properly or she goes to sleep too late, wakes up too cranky in the morning and [wife]’s mood controls the mood of the house.
It doesn’t matter how grumpy I am or anything like that. It’s her ability to, you know, it’s a two way street. Sometimes I’m not going to always be happy Larry and everything but if she’s down, the kids know it. So it’s very important in terms of having some sort of input to say that to the psychiatrist, “This is what’s happening”. Because [wife] might hide it. Or she might be embarrassed, or she might be feeling guilty. So she may not be as honest as what she should be with the psychiatrist.
Note: This website does not endorse this interpretation of the law pertaining to disclosure of health information, which was this carer’s understanding at the time of the interview. The relevant section of the Mental Health Act 2014 (Vic) is section 346(g), which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, and section 346(h) which enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.
A few carers, like Dianne, said the person cared for’s psychiatrist or psychologist had put time aside to speak to them at the start or end of the session. Rosemary’s son’s psychiatrist was ‘so concerned’ about him at one point that he called her and said ‘I want to open the channels between the two of us. And so I’m available if you want to talk to me, and I will tell him that I’ve spoken to you’.
Carers’ experiences of the approach of psychiatrists and mental health practitioners towards them
While some carers like Elizabeth and Rosemary said some psychiatrists could be very caring, quite a few carers talked about mental health practitioners who seemed uncaring.
Laura thought medical practitioners needed to show more ‘compassion’ to carers and ‘take on board’ what carers have to say.
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I feel the medical whatever you want to call them, staff, [need] to actually have a bit of compassion and hear what the carers are saying and learn what they’re living, because sometimes it’s not very nice. And as carers we want to help the person that is ill. However, I’m aware that the medical staff have, you know, umpteen patients and it’s very hard for them to help each and every one to their best ability. Because they are understaffed and underpaid and overworked.
But it would be nice just for them to, I guess, be a bit more compassionate and take on-board and hear what the carer is saying, because the carer lives 24/7 with the patient. And so when the carer says, “I need help, I need this to happen”, it would be awesome if the medical practitioners, nurses, whoever, could actually take that on-board, and, if it is within their power, to do something about it. It’s like changing medication. That would be awesome if that could happen. But it’s hard yards to get it to happen.
Some carers, like Marta, Alexia and Julie, felt practitioners, in Marta’s words, ‘put blame on’ them for the person cared for’s problems. Alexia said her son’s case manager had said she was an ‘overprotective mother’ and that her son ‘should move out’. When Julie told her daughter’s psychiatrist that her daughter was getting worse, she said he was ‘quite rude’, that she was ‘meddling’ and that her ‘anxiety … was causing a problem’.
Support for carers from psychiatrists, mental health practitioners and counsellors
Aside from support groups (see Carers’ experiences of support groups, support workers and respite care), many carers got support from their own GPs, psychiatrists, counsellors, and other mental health practitioners. Lisa was given free sessions with a psychologist through her GP and Jeannie was offered counselling through her local Community Health Organisation. Rosemary’s son’s psychiatrist asked her who she had to ‘talk to’ and told her she could ring him, which she said came as ‘a big relief’.
Mike found ‘family counselling’ helped him: ‘I can actually get out … just things that need to be said’. Julie said a ‘couple of sessions’ with a counsellor ‘put [her] on the right track for how to proceed with caring’ for her daughter. By contrast, Sasha had no ongoing counselling service in her regional area and had to go ‘quite a distance away’ for a good service (see also Carers’ experiences of caring for themselves).
Kate and her mum, who both care for Kate’s brother, both see a psychologist. Kate explained how it’s helped them deal with their ‘reaction’ to her brother’s ‘illness’.
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I think the main thing is to look after yourself as much as possible [sound of pet dog snoring in the background]. My mum and I have both seen psychologists and counsellors and people to sort of help us deal with our reaction to it all, and our way of dealing with it. And I suppose to my mum and to parents, I think, it’s about reminding them that they didn’t cause it and that they can’t control it and fix it either.
You know, I think my mum’s blamed herself a lot for it, you know, ‘If I’d done this would it be different?’ And so I think it, you know, it just is. And it’s a matter of trying to learn to live with it as best we can, for ourselves as well as for those that have the illness. I think the first bit was the hardest when we just didn’t know what was going on.
