Life after stroke means many different things to different people. Many tell us that the impact that stroke has in terms of social isolation, a loss of confidence and motivation, and not being able to do what they perceive to be normal things are some of the hardest and longest lasting impacts.
Long term support means very different things to different people. Documented needs include: Social isolation, feeling they can’t go out or maintain the social contact they once did; Reduced confidence because of mobility or communication issues and maybe feeling de-motivated because they can do what they could before; The need for information never goes but people say that even 5, 10, 20 years post stroke they want to know more about what’s happened to them and what might help; Many stroke people say they’ve lost their identity, dignity and self esteem, perhaps as result of being dependent on someone; And there is also a sense of a loss of control over their life; People tell us they want to meet others who’ve been affected to gain peer support; And that the need for emotional support is ongoing with issues of depression being common.
So what do we do? Our Re-ablement and Social Inclusion services aim to address these needs by providing people affected with long term support in a variety of formats: Social support focuses on provide support through groups which can be both social outlets for people as well as activity-based, perhaps helping people to get back a hobby or learn new skills. Our group in Stratford, for example, has an IT project where a volunteer works with an individual to teach them how to use the internet. Peer Support where we match new strokes with a trained peer support or befriender as a way of provide social contact with someone who understands what they might be going through And a range of specific support such supporting people to get back to work, encouraging expression through art, and we also have a number of personal budget services, supporting stroke survivors to identify what support they need.
Our model of support, as with all our services, put the person affected in the centre, identifying what they need and then working to provide that support. Our aim is to offer those affected by stroke a menu of activities within their group. We have experience of providing activities that are not only of interest but are accessible to everyone. The individual not only has support in deciding what to take part in, but also be able to take part in more than one activity, but has the option to change their mind and try something else. Sometime we provide the activity ourselves, sometimes we facilitate access, so for example if someone wants to return to their book club then we’ll support them to do that, going with the first time or talking to the club about stroke. We use trained volunteers in many areas to provide the service, many of who have been affected by stroke themselves and so have an insight.
So let’s look at a couple of examples quickly… In Stoke on Trent, we run a Long Term Support Service with a coordinator setting up three groups across the city in the last year, taking on and skilling up an existing group and maintaining contact with an independent Stroke Club. The coordinator worked with the community to identify what was needed and as a result started them across the city. One is an art café as that was what people said they wanted. Because we also have an Information, Advice and Support Service in Stoke as well, there is a good referral pathway between the two ensuring for IAS that support doesn’t end after 12 months but it can move onto to longer term community based support.
Our group in Basingstoke provides a range of support activities on one day, enabling those in the group to drop in and out of gardening, art, exercise and social activities depending on their own needs. This group runs alongside our Communication Support Service and so people are moved on from one to the other seemlessly. So much so that the long term support group has recently added peer conversation support to its range of activities.
Our Long Term Support Service aims to address the needs identified earlier and feedback from clients tells us that it does. Read quote. It promotes wellbeing, treating people with respect and dignity. Giving stroke survivor and carer alike the opportunity to be with others and share their experiences. It gives them choice and control over their own lives.
Read quote. The service, particular the groups, provide social support for people who may not otherwise go out and enjoy a normal social life. This reduces isolation, the feeling of being alone, and lifts the spirit and giving people the renewed energy to cope.
Read quote. Over time, the impact can be bigger, giving back confidence and a sense of something to strive for, however small. Because we provide a range of support activities, it helps people reintegrate back into the community, continue hobbies, learn new skills. The opportunity to focus on what they can do, not what they can’t.
1. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
Long Term Support
Stroke Clubs and Partnerships Manager
The Stroke Association
2. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
The long term need
• Social isolation
• Loss of confidence and motivation
• Need for ongoing information
• Loss of dignity and self-esteem
• Loss of control and independence
• Peer support from others similarly affected
• Emotional support
3. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
• Social support
– Support groups, both social and activity based
• Peer support
– Stroke survivor volunteers matched with those
• Specific support
– Includes back to work support, art projects and
personal budget support services
4. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
Model of support
• Person centred
• Menu of activities
– Directly provided
– Facilitated access
• Trained volunteers
7. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
• “I like the way we are both treated in the
group. My husband definitely benefits from
being amongst other people who have had
strokes and understand. I can also share
my feelings with the other carers – it’s
8. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
• “It’s good that we both come to meetings,
we have a laugh and it feels as good as
going out at night which we don’t do
9. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
• “The group makes a big difference. You’ve
got to have something to aim for and be
determined to do things. You’re either going
to lay down and die or get up and go.”
10. Stroke helpline 0303 303 3100 Website www.stroke.org.uk
• People affected by stroke have a range of
ongoing support needs;
• Our model of support provides a menu of support
that can meet the individual’s needs in a variety of
• It reduces social isolation, giving back confidence,
self-esteem, and motivation.
• It is an opportunity to focus on the good; the
opportunity to get back to a life after stroke.