Other people’s reaction to mental health and ECT
People we spoke to had often experienced quite severe mental distress and found that other people didn't have a lot of knowledge about mental ill...
Relationship with health and social care
People who we spoke to had a varied experience in their dealings with mental health services. Some people we spoke to valued the overall support of services, like helpful professionals, other patients to share stories with, the treatment they had received (particularly when very distressed), and the information they were given. However other people were critical of the services they received, for example staff didn’t communicate properly and didn’t listen to patient needs. Some felt services weren’t well coordinated and they were not able to see the same professional throughout their treatment, or found that hospital and community care was not joined up.
This section is about what people generally valued about health services and what they felt needed improving. When talking about services, people often focused on how much time they were given to talk about their problems, and whether their views about their treatment and condition were taken seriously.
When their mother’s depression got worse Lorraine and Annie said the health service did everything they possibly could for her. Other health problems were screened for and she was able to get care at home.
The main complaints people voiced about their health and social care were: feeling powerless, not feeling cared for; not being listened to or taken seriously; not being able to access healthcare staff when needed; not having enough help and support (particularly outside of a ‘crisis’); and that there was too much variation in the quality of services.
Mandie wishes she had stopped listening to the NHS sooner and she doesn’t think they listen to the individual. She decided not to have ECT and made a recovery without it.
Standard and consistency of service
People spoke to us about how much services had improved over the years. Some people gave very positive reviews about the service they received. Jane compared having ECT to the care she received during a planned caesarean. She described having ‘highly trained amazing consultants all focusing on me’. She felt they were ‘committing their time to my care’. Tania described the ECT staff as ‘passionate advocates” of ECT because they could see how it worked.
However, others felt that there were ongoing problems that needed to be addressed. Alka asked the Home Treatment team not to visit her husband anymore because they just seemed to sit and listen to her husband talk about how he was, which she thought just prolonged his illness. When Tristan’s wife suffered postnatal depression after the birth of their first child, they had a lot of visits from the Home Treatment Team. Tristan said although they were well intentioned, they varied in their expertise, and he felt they were not able to do much. Tristan and his wife moved to be nearer his family before having their second child so they could get family support instead.
Suzanne and John Y felt let down by her GP and by A&E in the period of time before she became psychotic. Her panic attacks, and a bladder infection that affected her sleep, weren’t properly dealt with.
Most people had mixed, rather than just good or bad experiences of health services. Beattie said that there were fantastic individuals within the health service, although she thought some aspects of the system needed to change e.g. she felt people are given too many drugs.
Although Tracy said the medical professionals in the general hospital didn’t treat her very well after she attempted suicide, the people in the psychiatric unit were very kind.
Despite ongoing challenges, some people gave examples of the health service trying to accommodate their individual needs. When Steve’s wife was given ECT as an outpatient, the transport was a ‘bit awkward’ because he was working. A freelance nurse was arranged to accompany her in a taxi back to the house (although she then had to get a taxi back to the hospital). But he was glad his wife was not being kept in hospital, and the hospital later organised for her to be transported without an escort in a shared minibus.
After a bad experience the first time around, when Tristan’s wife had her second baby, mental health services were ready to provide support for her after the birth and it made a huge difference.
Most people we spoke to had seen a number of different health professionals and been in hospital many times over their lifetime. People spoke about how much they valued coordinated care that adapted to their complex needs. David Z liked the fact that he had a social worker and a mental health support worker to help him through his discharge from hospital. Kathleen was impressed by the way in which her care was transferred from North America to the UK. Her care team handed over to a GP and psychiatrists in the UK and talked to each other on the phone so that preparations were made for her return.
When people were experiencing mental health problems things could change very rapidly and sometimes it was hard to find a professional who was available when people really needed them. Catherine Y’s consultant went on holiday for two weeks whilst she was an inpatient; she felt there was no one else she could ask about her care whilst he was away.
Some people talked about the problems that arose when their doctor was changed at short notice, or when they were handed over to a new psychiatrist who didn’t agree with their treatment regime. Sometimes this caused a setback in the person’s recovery, although for others a new person coming in with a new approach could be positive (see for more ‘Changing medication and moving to ECT‘, ‘How effective did people find ECT‘).
Communication and building a relationship
Many people talked about the importance of having a good relationship with medical professionals who were treating them and making decisions about their treatment (see for more ‘Messages to others‘). People often remembered caring professionals who had tried to help them, who spent time with them and took their concerns seriously. Jane remembers her occupational therapist: ‘I can remember what he looked like and I felt warmly towards him’. Tania had been threatened with ECT by a private consultant who she described as ‘angry’ with her for attempting suicide. But when a family friend later recommended ECT and explained she had a choice, she had a very positive experience and felt more comfortable about ECT. When the ECT ended, Tania ‘felt almost disappointed that [she wouldn’t] see [the staff] anymore’.
However, most people remember occasions when staff did not communicate well with them. David Y said hospital staff didn’t interact with him or his partner. Catherine Y found the hospital staff ‘difficult’. Matt felt that there was poor communication from the ward as to when he could see his wife after she’d had ECT.
Over the years Yvonne has had many hospital admissions and has seen many psychiatrists. She says she gets on better with female psychiatrists because of her history and prefers when they don’t clock watch.
Although John Z has had a good experience with his psychiatrist, he said some mental health professionals treat patients as over there, and see themselves as the expert.
Sometimes when people felt very distressed and concerned about their future they could be unsure what was happening and some describe feeling powerless. This lack of control was worsened by professionals who discounted what they were saying or ignored them when they needed help. Yvonne felt that a nurse wrote things in her notes that weren’t true and she had to check facts with her husband. When Jane was mentally ill, her doctor didn’t want to refer her and she feels she was only able to access specialist help because her friend (a community psychiatric nurse) became her advocate (for more see ‘Support networks‘).
Cathy felt that health professionals should take seriously what a patient tells them. She felt the opinions of people who were depressed could sometimes be dismissed.
Being involved in the treatment plan
Tania worked with her psychiatrist to make a decision about whether she should have maintenance ECT to help her come off one of her medications, and took the research she had done to her appointments. But not everyone felt they had a say. Catherine Z knew ECT worked, but despite asking for it repeatedly for her son, the psychiatrist tried many drugs before ECT was offered. Steve also found he had to ask for ECT and said it is not being offered to his wife now as readily as it was in the 1970s and 80s.
Being sectioned was particularly difficult for some people as they felt they had little choice over their treatment (for more see ‘Compulsory detention and treatment‘). Sue feels when she is sectioned she can’t put her view across and psychiatrists then ‘have more power than [is usual in] the legal system’ where each party gets their say. Although she has requested not to have ECT in future, she thinks she will be forced to have it.
Carers sometimes had to work hard to be included in the care of their loved one. Initially they were often unsure about their rights and how mental health services worked.
David Y had to leave his job so he could bring up two small children when his wife went into hospital. He had no income and wasn’t told about all the help and financial benefits that were available.
In the early years Carys felt side-lined by services as a carer. She felt frustrated about some of the ways in which users of mental health services had been treated but felt that things were improving.
You can read more about people’s relationship to healthcare services here ‘Staying in hospital‘ and ‘Diagnosis of a mental health condition‘. You can read more about ECT specifically in ‘Experience of having ECT‘ and ‘Getting information about ECT‘.
Staying in hospital while having ECT
Most people with mental health problems can be treated as an outpatient. However, there are times where this might not be possible doctors may encourage...