Stroke

Support from patients and support groups

Nearly all of the people we talked to had at some point been given information about a support group, although some, mainly older people, were not aware of any. Most support groups were in a local town; many are independent, although The Stroke Association runs some groups, as do Different Strokes, who cater for younger people affected by stroke. Some of the people we talked to had been instrumental in starting support groups in their areas, or had offered their services as volunteers. Support groups are also sometimes run by staff at stroke units who may also offer exercise or gym classes. Connect is a voluntary group in London for people with a communication disability following stroke (called aphasia), and offers advice and mentoring for people with communication difficulties.

The common experience of stroke can break down social barriers - for example a 67 year old woman had established mutual support with a 38 year old man - and others commented that they had made friends with people from different backgrounds.

People who enjoyed attending stroke groups often emphasised the value of being able to talk with people who had been through similar experiences - some saying that it was impossible for anyone who had not had a stroke to understand what they were going through. Groups often included a social side and arranged trips, fund raising events and educational sessions. Some groups focused on exercise or gym classes and all offered an opportunity to meet other stroke patients.

Carers and spouses also sometimes appreciated the opportunity to meet up at support groups - one woman pointed out that the carers always seemed to be wives at the group she and her husband attended. 

However, some people who had attended support groups had been disappointed by the type of activities on offer, or felt they had little in common with the other members. Meeting people who had had repeated strokes could be very worrying or could dent their own optimism about their recovery. 

Support groups can also be dominated by one or two strong personalities - one woman commented that she found the man who ran the support group an unsympathetic 'control freak'. A married couple thought that the local group that they tried just did not 'gel'. On the more positive side some made friends through the group with whom they continued to have regular contact, even after they stopped attending. 

It was not unusual for people to be in two minds about whether they wanted to spend time with other people who had had a stroke. Many formed a temporary bond, which was sometimes powerful, with the people they had met in the stroke unit. 

Meeting ex-patients who were recovering well could be very encouraging. Seeing patients who were very disabled was variously described as depressing or a reminder that one was not so badly off. One woman suggested that it would be very helpful for people who were about to leave hospital to have the opportunity to talk to someone else who had dealt with the stark realities of coping at home.

Some people told us that they were aware of local support groups but were quite certain that they would not want to go. One man explained that he was a private person, another that he was not very social. One said that having a stroke is 'not something you brag about'. Others suspected that the people who attended groups were older, or had more severe problems, or said they just did not feel the need to meet other people who had had strokes. A man whose GP had told him about the Different Strokes group decided that, although he enjoyed meeting people from many walks of life in the stroke unit, he preferred to concentrate on getting back to work and normal life. One woman said that she received all the support she needed from her occupational therapist. Sometimes people had enjoyed attending the group but found travel difficult, or had to stop going because they had other commitments on the weekday that the group met. 

While some people stressed how important they found it to meet other people who had had strokes, others commented that everyone's experience was too different to make comparisons or said that they preferred to mix with long standing friends. Because stroke is relatively common many people knew of someone else - perhaps a friend of a friend, colleague or relative - who had had a stroke. Other people who had experienced their own, different, health problems could be sympathetic and a valued source of social support.

Several people said that they had not yet been to a support group but thought that they might - an Asian man wondered if members of his community might find a group particularly useful. 


 

Last reviewed June 2017.
Last updated August 2013

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