Versus Arthritis Lived Experience Survey (VALES) FAQs

This survey will take around 15 minutes to complete.

In this survey we are collecting some personal information. We take great care to protect the privacy of the information people give us. We will process your personal data in accordance with data protection legislation.  

Any survey outputs such as reports will be anonymised - results will not be presented in a form which reveals your identity. 

You are free to withdraw from the survey at any time and you can request that your personal data are deleted at any time from the data we hold. However, once the survey results (which do not identify you) have been published, we would not be able to change the results by removing individual information.  

More information, including your data rights, can be found here: Privacy notice | Consent, data, your rights | Versus Arthritis 

We are looking to hear from a wide range of people who have arthritis. There is no requirement that you have spoken to a healthcare professional about your arthritis or that you have received any treatment for your condition. If you believe you have arthritis you are encouraged to fill in this survey. The survey is specifically for people over the age of 18 years old, and currently living in the UK.  

We want to make sure we hear from a wide range of people. If we receive a high number of responses from certain groups of people (for example those living in a particular area of the UK), we may close the survey to these groups to enable us to hear from a range of people across the UK. 

The word arthritis is used to describe pain, swelling and stiffness in a joint or joints. Arthritis isn’t a single condition and there are several different types, including Osteoarthritis and autoimmune inflammatory conditions including Rheumatoid Arthritis, Psoriatic Arthritis, Axial Spondyloarthritis and Gout. If you believe you have arthritis, even if you are not sure which type(s), please fill in our questionnaire.

There is no requirement to have a medical diagnosis of arthritis to complete this survey. If you believe you have arthritis (for example you have arthritis symptoms but haven't spoken to a GP) you are encouraged to fill in this survey too.

We want to make sure we hear from a wide range of people. If we receive a high number of responses from certain groups of people (for example those living in a particular area of the UK), we may close the survey to these groups to enable us to hear from a range of people across the UK and to make sure that we use all the data that we collect.

Anyone living in the UK who is over the age of 18 years old and has any type (or more than one type) of arthritis can complete the survey.  

Arthritis conditions include Osteoarthritis and autoimmune inflammatory conditions including Rheumatoid Arthritis, Psoriatic Arthritis, Axial Spondyloarthritis and Gout.  If we receive a high number of responses from certain groups of people (for example those living in a particular area of the UK), we may close the survey to these groups to enable us to hear from a range of people. 

This survey is looking at the lived experience of those with arthritis.  

We are interested in learning how arthritis has impacted different areas of your life and how you manage your condition(s). Our survey covers several topics, including whether you have received a diagnosis and the reasons for seeking or not seeking one, your experiences (if any) with healthcare and waiting for treatment, and how arthritis affects your overall quality of life. 

This survey will help us to better understand and raise the profile of the experiences of people with arthritis.  

We will use this information to help shape the work that Versus Arthritis delivers, via investing in world class research, delivering high quality services and campaigning on the issues that matter most to people with arthritis.  

We plan to publish a report based on the data collected through this survey, in early 2025.  

The anonymous data will be stored for a maximum of 10 years. The VA retention schedule determines that personally identifiable ‘contact’ data will be retained for 5 years following the last significant engagement of the data subject.  

More information, including your data rights, can be found here: Privacy notice | Consent, data, your rights | Versus Arthritis 

We will use this data from this survey to gather insight which will help shape the charity’s priorities and advocate for changes in policies and laws, improve and shape what the charity offers, and identify key areas for future research related to arthritis.

The survey will close on 18th August 2024 (dependent on response rates).

The survey is open to people with an arthritis condition who are over 18 years old, living in the UK. We want to make sure we hear from a wide range of people. If we receive a high number of responses from certain groups of people (for example those living in a particular area of the UK), we may close the survey to these groups to enable us to hear from a range of people across the UK.

This survey is looking specifically at the experiences of adults with arthritis. 

However, adults filling in the survey may have been diagnosed in childhood or adolescence which will provide us with an important opportunity to gather the longer-term impacts of living with arthritis from childhood. 

Versus Arthritis promotes projects, workshops and surveys for those below 18 years old through our Young People and People and Families Service. If you would like to get involved, please find more here - Young people | Living with arthritis, managing pain (versusarthritis.org) 

Due to the specific experiences and needs of children and young people, this survey will focus on people with arthritis over the age of 18. 

However, adults filling in the survey may have been diagnosed in childhood or adolescence which will provide us with an important opportunity to gather the longer-term impacts of living with arthritis from childhood. 

Versus Arthritis promotes projects, workshops and surveys for those below 18 years old through our Young People and People and Families Service. If you would like to get involved, please find more here - Young people | Living with arthritis, managing pain (versusarthritis.org) 

YouGov is an international market research and data analytics company who we have been commissioned to collect survey responses on behalf of Versus Arthritis. 

As well as collecting data via their own panels, YouGov is providing us with a platform to collect additional survey responses. 

They will not own or sell on your data.

Data will be stored securely and anonymously, and Versus Arthritis will never sell this data to third-party services or contact you unless we obtain your consent. 

In this survey we are collecting some personal information. Any survey outputs such as reports will be anonymised - results will not be presented in a form which reveals your identity. 

Should you provide explicit consent to be contacted by the charity, we will collect your email address.  

We take great care to protect the privacy of the information people give us. We will process your personal data in accordance with data protection legislation.  

You are free to withdraw from the survey at any time and you can request that your personal data are deleted at any time from the data we hold. However, once the survey results (which do not identify you) have been published, we would not be able to change the results by removing individual information.  

More information, including your data rights, can be found here: Privacy notice | Consent, data, your rights | Versus Arthritis 

In this survey we are collecting some personal information. Any survey outputs such as reports will be anonymised - results will not be presented in a form which reveals your identity. 

Should you provide explicit consent to be contacted by the charity, we will collect your email address.  

We take great care to protect the privacy of the information people give us. We will process your personal data in accordance with data protection legislation.  

You are free to withdraw from the survey at any time and you can request that your personal data are deleted at any time from the data we hold. However, once the survey results (which do not identify you) have been published, we would not be able to change the results by removing individual information.  

More information, including your data rights, can be found here: Privacy notice | Consent, data, your rights | Versus Arthritis 

This survey will help us to better understand the lived experience of people with arthritis.  

We will use this information to gather insight which will help shape the charity’s priorities and advocate for changes in policies and laws, improve and shape what the charity offers, and identify key areas for future research related to arthritis.  

Results of this survey will be published in early 2025. 

There is no monetary compensation for completing this survey.

We will use the insights from this survey to shape the work of the charity and will publish our findings in early 2025.  

This will be published on our website, shared across our social media and through our mailing lists in early 2025. If you wish to sign up, our social media is @VersusArthritis and our mail listings can be found here - supportercare@versusarthritis.org. 

The survey is only available online.

The survey is only available online.

You can read more about other studies you can be involved in by visiting our webpage at https://www.versusarthritis.org/research/get-involved-in-our-research/ or you can visit https://bepartofresearch.nihr.ac.uk/ for opportunities to get involved in health-related research beyond Versus Arthritis.

Want to hear more about the work we do and ways you can support Versus Arthritis?  

Don’t miss out on hearing about our latest research, support services and advocacy campaigns, as well as fantastic volunteering, fundraising and event opportunities.  

Please email supportercare@versusarthritis.org, and by doing so you provide consent for Versus Arthritis to contact you.

If you want to share your arthritis story further then Versus Arthritis would love to hear from you, as your lived experience is essential in the work that we do. You can email mystory@versusarthritis.org  with a brief rundown of your story and if you would be interested in discussing your experiences further.

You can change your preferences or opt out at any time by calling 0300 7900444 or emailing supportercare@versusarthritis.org. 

For more information on how we protect and use your personal information, please visit https://www.versusarthritis.org/about-us/our-policies/privacy-notice/. 

You are free to withdraw from the survey at any time by contacting data@versusarthritis.org - you can request that your personal data is deleted at any time from the data we hold.  

However, once the survey results (which do not identify you) have been published, we would not be able to change the report by removing individual information.  

More information, including your data rights, can be found here: Privacy notice | Consent, data, your rights | Versus Arthritis