Carers’ voice and confidentiality issues
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...
For many carers the GP (general practitioner) is the first port of call when seeking help for the person they care for. A GP can prescribe medicines, be someone to talk to and discuss different options with. GPs can also sign a patient off work, and refer them to other parts of the health service such as psychiatrists (but waiting lists can be long). GPs can also refer directly to talking therapy services.
Psychiatrists are doctors specialising in mental and emotional problems. They can diagnose mental health conditions and prescribe medicines and other treatment such as psychotherapy and CBT (Cognitive Behavioural Therapy). Some psychiatrists are part of ‘community mental health teams‘. People also meet psychiatrists as inpatients or outpatients in a psychiatric hospital.
The carers we spoke to were usually involved in the medical care of their relative and thought it was important to work well with GPs and psychiatrists. While some doctors were skilled at working with carers and patients, carers did have some reservations about the roles of doctors as explained below. See also ‘Carers’ voice and confidentiality issues‘.
Many of the carers came along to doctors’ appointments with the person they cared for. Most said that ideally there would be a good working partnership between doctors and carers and that the expertise of carers, as well as of doctors should be recognised.
Some had put a lot of work into building up good relationships with doctors over the years. They emphasised the importance of managing their relationship with doctors. For instance, they said it can help to let clinicians know you are not ‘against them’ or ‘bashing the system.’ Others said you have to be careful when telling a doctor they are not doing things well.
Several carers said their doctors were supportive, reassuring, took time to listen to them and helped them ‘get the appropriate help at appropriate times’. Several said that at six-monthly psychiatric consultations, the psychiatrist was careful to listen to both the carer and the person who was unwell.
Several carers said their doctor had helped find flexible solutions for medication. For instance, one GP had made it possible for the carer to collect her brother’s medicine from a local pharmacist every week. Another GP offered to organise injections for a carer’s son when he was visiting.
However, others had found doctors less helpful. For instance, many said that doctors did not listen or involve carers enough in decisions about treatment and care. Doctors were also criticised for talking in ways that were too negative or even like ‘a hopeless kind of condemnation,’ such as telling carers ‘point blank’ that their loved one would never recover, or not to ‘expect miracles’. These people said doctors need to talk in more respectful ways, and use language people could understand.
Many carers felt that doctors did not give them enough information when they first became carers and others said that some doctors ‘hide’ behind patient confidentiality and didn’t want to engage with carers .
People said it could be difficult to get to talk to doctors, particularly psychiatrists. One carer even said that his son’s psychiatrist had pretended not to be in when he had an appointment to see him!
Many found it frustrating that doctors made decisions based on very little time with the carer or the person with mental health problems. One man said that ‘the bus driver knows him better’ than his psychiatrist.
People were especially concerned about the lack of doctors available during crises and emergencies. One man said the psychiatrist saw his son only nine days after a suicide attempt, and others talked about how sometimes, during a crisis, the police are their only option to get help (see ‘Services in the community‘).
Many carers said that their relative was seen by a different GP or psychiatrist almost every time they had a consultation, which made it difficult to build good working relationships. One carer thought that a lack of continuity and communication between doctors resulted in her sister taking twelve different prescribed medications at the same time. She felt both she and her sister had been ‘let down’ and that doctors ‘protect their own’ when something goes wrong.
While some doctors were clearly engaged in patient care, some carers felt many doctors could be more involved. Suggestions here included that doctors should be more willing to do home visits, especially when the person who is unwell doesn’t want to cooperate. A few mentioned that GPs could be more involved in early interventions and some suggested that having mental health workers based in doctors’ surgeries could increase the involvement of doctors.
One woman had been told by her son’s psychiatrist that ‘now that he is stable he can be seen by his GP’. She was unhappy because she thought psychiatrists and not GPs would keep up with the latest treatments for mental health problems.
One carer was concerned that no one talked to her about whether her son might get better or worse. She felt doctors thought ‘as long as he’s quiet in a corner he’s not causing any trouble.’ To her the doctors seemed to aim at ‘being stable’ rather than recovery (see ‘Carers’ views on treatment and cure‘).
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...
Carers of people with mental health problems come into contact with different hospitals departments. If people with mental health problems are very unwell and considered...