My Involvement Profile

“I’ve had so many good experiences, getting involved in the black user group, getting involved in a national service user organisation and attending some brilliant conferences. They took me to a place that I wasn’t at before, which is opening my understanding and opening my mind to different experiences and the way different people solve different problems, which is great.”

(Service user)

If you want to share your lived experience

Tired of repeating your access and support needs over and over again?

It gets irritating doesn’t it? Having to repeat your access requirements to various organisations, only to find they’ve been forgotten about, or lost, or you’ve missed something. Perhaps there’s an adjustment you need which you often forget to ask for, only to remember when it’s too late. Or maybe you don’t like to ask for what you need, thinking it’s ‘making a fuss’ to ask for larger print or for things to be sent by post rather than email.

But those reasonable adjustments can make a big difference. They can be the difference between feeling involved or feeling excluded, the difference between having your say, or staying silent and letting someone else share their opinions instead.

Shaping Our Lives is a non-profit, user-led group, led by Disabled people and service users. We want to make sure everyone can have their say, especially those from marginalised groups who often face barriers to getting involved.

Involvement activities enable people to influence and improve policies and services that affect their lives, like health or social care. Involvement can mean sharing your experiences and opinions in a focus group, a patient involvement forum, or a research study.

The My Involvement Profile was designed by Disabled people. It’s made up of two simple template forms.

It can help you:

• Keep a record of your involvement activities.
• Keep a list of your access and support requirements so you don’t have to keep repeating them.
• Each section has help notes to assist you in completing it if you need them.

We have also included in the personal information form a place to record interests, skills, and involvement activities. Having a place to jot down interests and skills is a useful thing to have if you’re thinking about getting involved with an organisation as part of their board, public feedback forums, or research groups.

The Profile is free to download and use. We will just ask you a few quick questions and then it’s yours to use.

If you work in the field of involvement

Involving people from seldom heard and marginalised groups has never been easy, and whether you want to consult, involve, engage or co-produce with service users, recognising the barriers standing in the way, and being committed to tackling them, will help you to both engage more people and make the experience more positive for them, increasing the possibility of their participation in the future.

One thing that may help you to do this is the My Involvement Profile. It was designed by Disabled people and based on our research where deaf and Disabled people told us that they don’t always record their support requirements, and don’t always have their access requirements met.

The Profile is a simple, free template form, which comes with help notes if needed, where participants can record access and support requirements, and their involvement experiences and interests.

Using this template, developed by a user-led Disabled People’s Organisation, would show those who lack confidence about asking for support that you value their requests and take the process seriously.

The My Involvement Profile also comes in an Easy Read version.

Once I’ve got it, what do I do with it?
After you’ve downloaded the My Involvement Profile, here are some suggested next steps:

Share it with your colleagues – Inclusion and accessibility should be everybody’s concern and the Profile can be used across a wide range of projects and activities.

Make it part of your application process – for your involvement activities. That way you’ll be collating access and support requirements from the start, giving you time to ensure your activities are inclusive.

Send it out – to existing patients, service users and people who are already involved with you. Ask them to complete it to make sure you are fully aware of all their access and support requirements.

Find out more – about inclusive involvement with our free resources and blogs.

Join the inclusive involvement community – join over 1000 others in our free community of people committed to inclusive involvement

Frequently Asked Questions

What is involvement?

Involvement activities enable people to have a say in policies and services that affect their lives. It can mean sharing experiences of using services, of being part of a diverse community or of having an impairment or long-term health condition.

It can be called many different things, including consultation, engagement and co-production.

There are different types of activities when it comes to involvement. You may complete a survey about a local health service, take part in a focus group with your local authority, or join a group to represent patients at your local GP surgery. You could get involved in a research study.

If you want to find out more about involvement please visit our support to share your lived experience page.

How do I find involvement opportunities?

We list them on our website, or visit Be part of research, run by the National Institute for Health and Care Research. You might also want to see if your local GP or hospital are looking for patients to get involved.