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.

Agree

Disagree

About You

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

Yes, energy impairment, or fatigue is a main restricting feature of my condition/impairment

Yes, energy impairment or fatigue is a secondary feature (ie not the main or most restricting feature) of my condition/impairment

Not Sure

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* 3. Do you consider yourself to be disabled?

Yes

Not Sure

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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'

Chronic pain condition

Ehlers Danlos Syndrome/hypermobility spectrum disorder

Fibromyalgia

Hypothyroidism

Inflammatory bowel disease (eg Crohns Disease or colitis)

Long Covid

Lupus (SLE)

ME/CFS

Mental health condition

Multiple sclerosis

Other physical impairment from birth

Other neurological condition

Postural orthostatic tachycardia syndrome (POTS)/dysautonomia

Prefer not to say

Other (please specify)

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

Other (please specify)

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

Other (please specify)

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

Other (please specify)

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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?

Yes

Maybe

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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