Answers to frequently asked questions about involvement at the Stroke Association and the Stroke Views Involvement Network.

Who can take part in involvement work?

We invite stroke survivors, carers and family members to sign up to the Stroke Views Involvement Network. 

Please be aware that we're likely to have more opportunities available for stroke survivors and carers than family members. However, we welcome family members to sign up and participate in activities that are relevant to them. 

What is meant by 'lived-experience' of stroke?

Personal knowledge about a topic gained through first hand, direct experience. We consider those living with the effects of stroke as survivors or carers or family to have lived experience.

What's the difference between volunteering and involvement?

Volunteering is about giving your time to support us in a number of different roles. Involvement gives you an opportunity to influence our decision-making.  

Only people with lived experience of stroke can apply for involvement work.

I'm a volunteer. Can I also sign up for involvement?

Yes, if you're a stroke survivor, carer or family member.

How much time will I have to give to involvement?

This is up to you. Involvement opportunities will vary in length and time commitment. This will be made clear on the advert or role profile. Some may require multiple meetings over a number of weeks or months, whereas some will be one-off opportunities that can be done in your own time, such as surveys.

Please let us know if you're struggling with an opportunity you've signed up for. We will support you.

What are the benefits to me being involved?

Involvement can increase confidence, allow your voice to be heard, help improve the future for other stroke survivors and carers and help you to develop new skills such as leadership, public speaking and presenting. To find out more about these benefits, take a look at our 'What is involvement?' page.

I’m not confident using technology. Can you help?

We'll try our best to support with technology and make this as accessible as possible. We have helpful guides that explain how to use online meeting platforms such as Zoom. The project leader may also be able to help you practice before a session.

I need to take a break from involvement work. Is this okay?

Yes, we'll keep your details for you to return at a later date. You don't need to tell us you're taking a break, but if you'd like communications to be paused, please let us know.

How will I know if my contributions have made a difference?

Feedback is an important part of involvement work. It’s vital for those who have given their time, energy and ideas to understand what the results of this are. The team you've been working with will provide feedback in a timely and clear manner.

What type of work will I be expected to do?

Involvement opportunities can be quite varied. You might be asked to help plan an event, attend meetings to support the design of a new product or service, user-test new products, help us develop marketing or information materials, sit on recruitment panels or share your ideas in a survey or discussion group. Which activities you choose to opt into are up to you! Read more on this page.

I'm a professional. Do you have any resources that can support me?

We've adapted our Involvement Handbook to make it more relevant to external persons. Please be aware that the guide was created for internal use at the Stroke Association. 

If you have any other questions, please email involvement@stroke.org.uk and we'll be happy to help.

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