Health and social care workers are meant to involve carers when they give services to people with mental health problems. However, carers’ experiences of being involved varied. Some said that carer involvement in services is a fairly new thing, and not all workers include carers’ views. Others were unsure about the extent of their right to be involved. Some also said that coming from a minority ethnic community can make it harder to be heard (see ‘Services and minority ethnic communities‘).
Many said that often neither carers nor workers get the ‘full picture’ because workers don’t listen to carers, or they can’t talk to them about things covered by patient confidentiality. When workers don’t listen to carers, the health of people with mental health problems was thought to be at risk. Having experiences on both sides of the table, some carers working in the mental health field thought that the issue of patient confidentiality should be looked at again.
Miriam says patient confidentiality is tricky when it puts people at risk.
Why listen to carers?
Some carers said that people with mental health problems don’t always admit being unwell, they can find it hard to express themselves or to keep a balanced view of their situation. Some carers said the person they cared for heard voices telling them not to talk to doctors, and some hide that they are unwell and present well to doctors.
Carers with everyday contact with the person who is unwell can explain ‘how it has really been, the last few weeks’ and are ‘an important part of the conversation’. This can be particularly important when the professionals don’t know the patient’s cultural background very well. Carers said that without their input, doctors and service providers may not get the information they need to make the right decisions about treatment.
Sarah says carers recognise signs missed by professionals who don’t really know the person…
There can also be practical reasons for having more open communication with carers, particularly when the carers are the ones setting up appointments or looking after medication.
Ramila got frustrated when she rang the surgery and they refused to tell her if her brother’s…
Several carers thought that involving the whole family is the best way to help people with mental health problems and that professionals should find ways to involve them.
Miriam thinks regular communication between families and professionals can help prevent crises.
Experiences of being listened to
Some carers felt listened to by service personnel. Some said that people in voluntary organisations and CPNs were sometimes better than doctors at taking their views on board (see ‘Support from carers’ services‘). Others said the doctors also listened, treated them with respect and involved them fully.
Ramanbhai comes along to his wife’s consultations and they meet the psychiatrist together after…
Some, who had cared for their loved ones for a long time, said carers are listened to more nowadays. Some said they were ‘seen as an expert now’ and professionals asked for their advice.
Jane thinks carers today are speaking up and being listened to more than before (played by an…
Some carers described themselves as having to be ‘the voice’ of the person with mental health problems because they could not express themselves or because they did not speak English. Some also pointed out that there could be a danger in the carer becoming too powerful in the relationship.
Experiences of not being listened to
Many carers felt, however, that professionals didn’t listen to them. Most of these carers said they felt like ‘a voice in the wilderness’ and that professionals just ‘don’t want to hear’, that they ‘hide behind patient confidentiality’ or only pay lip service to carers. Sometimes they didn’t invite them to important meetings, for example about care plans.
Agnes was told she had to leave the hospital for her daughter’s test, but was not told why.
One carer who came to Britain in 2000 said she initially didn’t understand how patient confidentiality worked in the UK system. She had found it hurtful to be ‘shut out’ of her husband’s care. She had also been denied involvement in consultations even after her husband had asked his psychiatrist if she could come along.
Patient confidentiality needs to be explained to people who are new to the UK and patients should…
One carer said she felt ‘I am only being heard when it comes to sectioning [when] they need you on their side to make things go smoothly’.
She says the hospital wanted her to sign sectioning papers while ‘bluffing’ about what was…
One or two said they had stopped coming along to appointments because it is so hard to cope with being ignored or feeling that you are not trusted.
Some carers had ‘fallen out with’ workers when trying to get their voice heard, and some were careful what they said to (or about) workers to make sure they did not compromise the treatment of their loved one. One carer who had disagreed strongly with her father’s treatment reported that legal action had been taken against her. Others also felt doctors and ‘the system’ were very powerful compared with carers.
Elaine felt the psychiatrist questioned her mental health because she was a ‘difficult relative…
Sophie says doctors sometimes don’t talk to you to protect ‘their own.
One woman said that professionals could afford not to listen to carers because when all is said and done, ‘they know we’ll get on with it’.
How to get heard
Some said the best way of being heard was to build good relationships with professionals over time.
Over the years he has developed a good relationship with his GP.
Others said that being active in carer groups and organisations can give ‘the backing of others’ and ‘teach you how the system works’, which helped people to be more assertive. Some of the carers who worked in services themselves thought they were more likely to be listened to, and they often felt quite able to speak up.
She thinks her father would have died in hospital had she not intervened using her skills as a…
People talked about having to be firm and to ‘know what you want’. Some made notes which they brought with them to meetings with professionals. People also talked about ‘not taking no for an answer’ and that ‘sometimes you need to annoy people’, or ‘learn to stamp your feet and shout’.
Some had written to their MP or threatened to involve the police if they felt there was neglect or abuse. When relationships had broken down, one carer said she only wanted to speak to professionals with a third party present, and one or two carers had involved solicitors when they felt things were getting really out of hand.
How to listen to carers
Some carers gave examples of how professionals had found ways to really listen to them without breaking patient confidentiality.
A friendly doctor took time to talk properly to Miriam and her son.
Others said it can be difficult and ‘really uncomfortable’ to talk to professionals about their loved one with them present. One woman said it made her feel guilty. Talking to professionals without the knowledge of the person they cared for was seen as bad for their relationship, and most said they didn’t involve themselves without the agreement of the person they cared for.
Despite the attitudes of professionals, Nick involves himself but always asks his son’s permission.
Some said there should be something in place which allows ‘everybody’s view and perspective to be heard.’ And this shouldn’t necessarily mean the carer and the person being cared for had to be present at the same time. Instead, professionals could help build trusting relationships between both the carer and the person who is unwell.