DRUK/CII evidence gathering survey

This survey is part of a collaboration between Disability Rights UK and Chronic Illness Inclusion. The aim of this survey is to explore 1) Whether people with different energy-limiting health conditions and impairments are interested in working together on issues of social justice and disability rights. 2) If so, what are the areas of greatest need, and where do the opportunities for change lie? We intend to use the evidence gathered in this survey to help us make the case for resources to take this work forward. It also helps us to ensure that any work we do in future is co-produced with a diverse range of chronic illness communities. Thank you for your participation. The survey closes on 25th September 2021.
Consent Page

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* 1. This survey has nine questions and should take 5-10 minutes to complete. You can take rest breaks or complete the survey in stages. Clicking on the survey link again will automatically take you to where you paused.
Please select your choice below. Clicking on the "agree" button indicates that:

• you have read the above information

• you voluntarily agree to participate

• you are at least 16 years of age

If you do not wish to participate in the research study, please decline participation by clicking on the "disagree" button.

About You

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* 2. Do you consider yourself to have an energy-limiting health condition or impairment?

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* 3. Do you consider yourself to be disabled?

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* 4. To ensure we are reaching a range of chronic illness communities, please tell us about any health conditions you have. Please tick all that apply and list any health conditions not listed here in the box marked 'Other'

Barriers to Social Participation

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* 5. Barriers to social participation 
We want to understand the social and cultural barriers to living with your illness or impairment as well as possible. This means any restrictions you face in addition to your symptoms or impairment itself.

In which of the following contexts do you experience externally imposed barriers or unnecessary restrictions, other than your symptoms or impairment itself?

  Not at all To some extent A great deal
Socialising with friends and family
Contributing to community or society (voluntary work, civic engagement, community action, politics
Paid employment
Education and training
Social care services (getting assistance)
Social security (getting enough income to participate in society)
Healthcare
Getting out and about (public transport, public spaces)
Leisure and cultural activities
Housing

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* 6. Thinking of all the contexts listed above, which, if any, of these types of barriers or restrictions do you experience?

  Not at all To some extent A great deal
Inaccessible environments (eg lack of wheelchair access, noise levels, lack of seating)
Negative attitudes about disabled people (eg low expectations or hostility when you are perceive
Inaccessible technology
Inaccessible processes (bureaucracy, systems or policies)
Disbelief in my illness or disability
Lack of understanding of chronic illness symptoms or energy impairment
Innovation and Change

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* 7. Innovation and change
Putting aside any need for medical treatment and cure for your disease, we want to know what social changes are needed to improve the life chances of people with ELCI and energy impairment. We are talking about measures that improve wellbeing and increase opportunity

1.     Please Tell us your top three solutions for improving the lives of people with energy limiting health conditions or impairments

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* 8. Which of the following activities and services would improve your wellbeing and participation in society?

  Not important Somewhat important Very important
Shaping and changing policies so they take account of energy impairment 
Changing public perceptions of ELCs
Getting information about your rights
Support with claiming welfare benefits
Support at work
Support with housing
Support accessing social care
Support with getting more physically active
Support with accessing education (including Higher Education)
Connecting me with other individuals with ELCs (peer support)

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* 9. Would you be interested in being part of a panel of ‘experts by experience’ to help raise awareness and improve provisions for energy-limiting conditions?

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* 10. Thank you for taking this survey. If you would like to ensure that other disabled people with your health condition(s) are represented in the evidence we collect, please share the survey in your online communities.

If you would like to be contacted in future about taking part in an experts by experience panel for energy-limiting conditions or impairments please leave your email address  

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