Electroconvulsive Treatment

Support networks

Getting support was vital for many of the people we spoke to. People who had had ECT, and those who cared for them, could easily experience very difficult and isolated episodes. Many felt they needed support desperately at these times in their lives. Mandie researched how mental health is dealt with in other countries and found that treatment and recovery isn’t always about drugs or ECT, it is also about seeking the support of others. 

When people themselves, or someone close to them, first became unwell they often needed practical help. Help with childcare, transport, paying bills or doing household tasks were all valued. Yet, people also said they needed emotional support, information about their rights as a patient in an inpatient ward, or access to support and information for carers. People valued finding someone who really tried to understand what they were going through. It was good if they knew a little about mental health issues as well. Overtime people often got support from organisations that weren’t just focussed on mental health, but on wider issues such as physical fitness, wellbeing and faith/spirituality.

People got support or looked for support at different times in their illness. For example David Z was happy to make decisions on his own when he was having the ECT treatment and didn’t access support workers until after he left hospital.

Throughout their illness people we spoke to received support from a number of different sources: other services users, carers, employers, support groups and charities, friends, church, and their families as well as the NHS. You can read more about support groups and organisations that can help ECT patients and carers in the resources pages: ‘Mental Health Resources’ and ‘Electroconvulsive Therapy Resources’.
Old friends and making new friends
People we spoke to often relied on the help and companionship of friends both at the time of crisis, and in the longer term, to support their recovery. Some spoke about the care they received from lifelong friends before they needed ECT. However, sometimes when people were unwell they didn’t have the support of their usual network of friends or found it difficult to talk to their friends about the illness. Making new friends who understood, or had experience themselves of mental illness (like other patients), could be a great source of comfort.
While staying in hospital some people said that forming friendships with other patients and even staff provided much needed support as they adjusted to life on a ward. Helen found the friends she made in an old asylum helped her survive her time as an “inmate”. Tracy said that perhaps because the staff didn’t have much time for them in the past, “patients looked after each other”. She made a good friend when she was in hospital, who later became the bridesmaid at her wedding. Perhaps because she had trained as a nurse herself, Tracy also made friends with some of the night staff at the hospital and has kept in touch with them.
Support Groups, organisations and helplines
Some people accessed groups that were set up to support service users and carers. They benefited from the formal support these groups provided, and particularly valued meeting others who shared their experiences. One woman met her husband at a support group. 

There are national charities that provide support lines for people experiencing difficulties, and for some having someone to talk to confidentially on the end of a phone line was a huge help. Organisations people talked about included:

•    MIND local groups
•    Hafal in Wales
•    Samaritans phone line
•    Other national charities such as Rethink mental Illness
Catherine Y found that it was only once she had a support worker from a charity that her recovery really began because there was a steady progress in the activities offered, starting with just going out for a cuppa tea, then going swimming, then to the gym. Changing the goal posts and introducing new challenges really helped.
Some people accessed help through NHS mental health services and you can read more about that in ‘Relationship with the health and social care’. Sunil, who is a medical consultant, found help through a bipolar service run by a clinical psychologist and went on a course called ‘Mood on Track’ to help him understand his illness and spot early signs of highs and lows so he could “nip things in the bud”.

However some people, like Tristan, avoided support groups for various reasons e.g. they could get negative, yet were still able to find advice and support from individuals.
Carys, who had worked in a carers group for many years, felt that health services did not do enough to recognise the needs of carers, such as providing support when a carer was ill or in hospital. David Y only got help from health services when he was desperate and near breaking point: he had quit work and was struggling to look after his wife and two small children.

Other sources of support
People who were working said they got mixed reactions from their workplaces about their illness. Tracy said that she thought there was still stigma about depression and someone taking time off work for depression would not get much sympathy, “pull yourself together”, whereas someone taking the same time off for surgery or a broken leg would, “oh poor you”. Yvonne found that her managers at her work were very supportive and although she hasn’t had any sick leave due to her mental health, she feels able to speak openly to them and they understand. Alka said that her husband’s work were more understanding about his jaw cancer than about his mental illness.

Sometimes carers wanted support and advice about how to have more input into the care that their loved one was receiving. Carys didn’t know where to go when she decided she wanted to stop her daughter’s ECT treatments. But she thought of going to the Citizen’s Advice Bureau.

A few people spoke about the comfort and support they got from their spirituality and faith

For more see ‘Managing mental illness and recovery’.

Last reviewed January 2018.


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