People we spoke to had often received information about ECT from medical health staff in the form of a leaflet or through a discussion with their consultant, or from the Internet. Some people found the information that they received very helpful, and others said they were so unwell they didn’t really want much information or couldn’t take it in. But some felt strongly that they did want to know more about ECT. You can read more about people’s first reactions to ECT here: ‘First thoughts about ECT and finding out more‘. People who had had ECT a long time ago, like Albert who had it in the 1960s, weren’t given any information about the treatment or possible side effects (for more see ‘Side effects of having ECT‘).
This summary is about people who wanted to find out more about ECT. It wasn’t just getting more information that was important but also the way information was given and the timing of the information. For example, Cathy said it would be best if medical staff discussed ECT long before people got to the worst stages of their illness. By the time they really need the information, they are often in crisis and not well enough to absorb it. Catherine Y argued that as long as a person has some capacity to understand what is being said, they should be given information. She said it can help to give examples of how others have responded to ECT along with detailed information about ECT so that they can weigh up the pros and cons for themselves (for more see ‘Messages to others‘).
Sheila had some knowledge about ECT from when she worked in a mental health unit twenty years ago, but wanted some up-to-date information. Getting more information gave her a bigger understanding of ECT.
What people wanted to know
People wanted to know what to expect from their ECT treatment including:
- Whether ECT was going to help them feel better
- How long it might take to work
- How many sessions of ECT they would have
- What would happen on the day of treatment, and
- What the possible side effects might be
Some wanted more detailed information about ECT than this, for example:
- How long the electric shock lasts
- How it works
- Why it sometimes doesn’t work
- What causes the side effects
Catherine Y wanted to be able to clarify with the medical team things shed heard from other patients about ECT.
Many carers wanted to be well informed and involved in decisions about their loved one’s treatment. David Y was told his partner would have a few treatments. He thought that just meant 2 or so, and so was surprised when she had twelve treatments. Sometimes medical staff appeared to give carers conflicting information, for example about whether they could see their loved one before and after the ECT. Some carers felt they were just ignored.
Matt said he was promised he could see his wife straight after her first treatment and later told he couldn’t. He felt he wasn’t taken into account or given much information.
Where to get information
People we spoke to mentioned a number of places where they had gone for information about ECT, including:
- A public library
- The internet
- Speaking to their GP, consultant or other health staff
- Speaking to other patients and friends who had had ECT
- Attending user groups
- Phoning up and/or going to meetings held by mental health charities such as MIND and Hafal
Matt and Catherine Y found some information on the internet quite helpful, such as an information sheet from the Royal College of Psychiatrists. But John Y read stories about ECT ‘changing your personality’, long-term memory loss and loss of creativity. He was sceptical, and concluded that ECT was a bit ‘hit and miss’. Alka wanted as much information as she could get, and found American websites were good at providing links to further information. She said it would have been helpful to have had signposts for further information from medical staff.
Others had found it most helpful talking to people who had experienced ECT, either at the hospital or through charities and user groups. Quite a few people, especially those who had had ECT in the past ten years, spoke about getting good information from medical staff. People’s experience of how ECT was explained to them suggested an improvement in the way the health professionals communicate with patients and carers over recent decades. However, a few people thought some medical staff played down the side effects of having ECT (see for more ‘Side effects of having ECT‘).
Lorraine and Anne were worried about their mother having ECT at first but read the leaflets, looked online and talked to people at the hospital who had had it and were able to ask a lot of questions.
Despite getting a lot of positive information from his consultant about ECT, Tristan was concerned because this didn’t seem to fit with its use as a last resort treatment.
Some people had enough time to gather information, get shown around an ECT suite, and talk to staff and other patients. However, others felt some pressure to decide what they thought about ECT quickly. When ECT was presented to them or their loved one as a ‘last resort’ this could add to the burden. Sue said she wanted more information than was in the little A4 leaflet but she was in hospital and couldn’t access the internet to do any research (see ‘Deciding whether to have ECT‘).