Screen Reader Mode Icon Check SCREEN READER MODE to make this survey compatible with screen readers. MS Trust Listening Project: Life with MS in 2022 Thank you for taking the time to complete this survey from the MS Trust. We are interested in understanding how MS affects people’s lives in different ways. The following questions will cover all aspects of life from hobbies to relationships to work and money.The survey consists of 30 questions and should take about 20 minutes to complete. This survey is for people with MS but family, friends or carers are welcome to complete it on behalf of those people with MS they care for.The survey is anonymous and data will be stored in line with our data and privacy policies. You can view these here.The MS Trust is committed to making the voice of people with MS stronger in everything it does. Knowledge and understanding obtained from this survey will help guide the charity's work and priorities. We will be sharing the survey report to influence the support and services provided to people living with MS.The survey is being run for the MS Trust by a consultancy, Brighter Together Consulting. If you need any more information about this survey, or help completing it, please contact listeningproject@brightertogetherconsulting.co.uk OK About youThe next few questions ask you details that will help us to ensure we are reaching and talking to a diverse and inclusive range of people living with MS. We will not ask you any details that will make this information identifiable (such as your name or address) - in other words, although these questions are personal, your answers are anonymous. OK Question Title * 1. What is your age? Under 20 20-29 30-39 40-49 50-59 60-69 70-79 80 or over Prefer not to say OK Question Title * 2. What is your gender? Female Male Prefer not to say Other (please specify) OK Question Title * 3. What is your sexual orientation? Bisexual Gay Heterosexual Lesbian Prefer not to say Other (please specify) OK Question Title * 4. In what year were you diagnosed? 2022 2021 2020 2019 - 2015 2014 - 2010 2009 - 2000 1999 or earlier OK Question Title * 5. What is your ethnicity? Arab Asian or Asian British - Bangladeshi Asian or Asian British - Chinese Asian or Asian British - Indian Asian or Asian British - Pakistani Asian or Asian British - Any other Asian background Black or Black British - African Black or Black British - Caribbean Black or Black British - Any other Black background Mixed - White and Asian Mixed - White and Black African Mixed - White and Black Caribbean Mixed - Any other mixed background White- British White - Irish White - Any other white background Prefer not to say Other (please specify) OK Question Title * 6. Is English your main language? Yes No - what is your main or first language? OK Question Title * 7. What is the highest level of education you have completed? GCSE/O level/CSE A level Vocational qualifications (eg NVQ or SVQs) Undergraduate degree Postgraduate degree None of the above Prefer not to say OK Question Title * 8. Do you have caring responsibilities? (For example, do you regularly provide care for children or an elderly relative?) Yes No Prefer not to say OK Question Title * 9. What is your religion or belief? Buddhist Christian Hindu Jewish Muslim Sikh No religion or belief Prefer not to say Other (please specify) OK Question Title * 10. Do you have any other health conditions? No Prefer not to say Yes - what are these? OK Question Title * 11. What is your relationship status? Divorced Living with a partner Married Single Prefer not to say Other (please specify) OK Question Title * 12. In what country do you live? England Northern Ireland Scotland Wales Other (please specify) OK About your MSThe next few questions ask about the impact of MS on your day-to-day life. Please note that you may find the subject sensitive or emotional. OK Question Title * 13. What type of MS do you have? Primary progressive MS Relapsing remitting MS Secondary progressive MS Don't know Prefer not to say Other (please specify) OK Question Title * 14. For how long did you have MS symptoms before you were diagnosed? I had symptoms for less than a year I had symptoms for about one or two years I had symptoms for about three to five years I had symptoms for about five to ten years I had symptoms for more than ten years OK Question Title * 15. Has your MS altered your life? Yes, my life has completely changed Yes, my life has changed to some extent No, my life is the same as it was OK Question Title * 16. How has MS affected the following aspects of your life? No impact Minor impact Moderate impact Severe impact Finances and money Finances and money No impact Finances and money Minor impact Finances and money Moderate impact Finances and money Severe impact Work and career Work and career No impact Work and career Minor impact Work and career Moderate impact Work and career Severe impact Relationship with friends Relationship with friends No impact Relationship with friends Minor impact Relationship with friends Moderate impact Relationship with friends Severe impact Relationship with loved ones Relationship with loved ones No impact Relationship with loved ones Minor impact Relationship with loved ones Moderate impact Relationship with loved ones Severe impact Mental health/ emotional well being Mental health/ emotional well being No impact Mental health/ emotional well being Minor impact Mental health/ emotional well being Moderate impact Mental health/ emotional well being Severe impact Hobbies and pastimes Hobbies and pastimes No impact Hobbies and pastimes Minor impact Hobbies and pastimes Moderate impact Hobbies and pastimes Severe impact Daily activities (eating, dressing etc) Daily activities (eating, dressing etc) No impact Daily activities (eating, dressing etc) Minor impact Daily activities (eating, dressing etc) Moderate impact Daily activities (eating, dressing etc) Severe impact Sexual relationships Sexual relationships No impact Sexual relationships Minor impact Sexual relationships Moderate impact Sexual relationships Severe impact Ability to live independently Ability to live independently No impact Ability to live independently Minor impact Ability to live independently Moderate impact Ability to live independently Severe impact Self esteem Self esteem No impact Self esteem Minor impact Self esteem Moderate impact Self esteem Severe impact OK Question Title * 17. Have you experienced any of the following physical MS symptoms? No impact Minor impact Moderate impact Severe impact Mobility issues Mobility issues No impact Mobility issues Minor impact Mobility issues Moderate impact Mobility issues Severe impact Balance issues Balance issues No impact Balance issues Minor impact Balance issues Moderate impact Balance issues Severe impact Altered skin sensations eg tingling, burning, numbness Altered skin sensations eg tingling, burning, numbness No impact Altered skin sensations eg tingling, burning, numbness Minor impact Altered skin sensations eg tingling, burning, numbness Moderate impact Altered skin sensations eg tingling, burning, numbness Severe impact Pain Pain No impact Pain Minor impact Pain Moderate impact Pain Severe impact Bladder issues Bladder issues No impact Bladder issues Minor impact Bladder issues Moderate impact Bladder issues Severe impact Bowel issues Bowel issues No impact Bowel issues Minor impact Bowel issues Moderate impact Bowel issues Severe impact Fatigue Fatigue No impact Fatigue Minor impact Fatigue Moderate impact Fatigue Severe impact Visual issues Visual issues No impact Visual issues Minor impact Visual issues Moderate impact Visual issues Severe impact Sexual dysfunction Sexual dysfunction No impact Sexual dysfunction Minor impact Sexual dysfunction Moderate impact Sexual dysfunction Severe impact Vertigo/ dizziness Vertigo/ dizziness No impact Vertigo/ dizziness Minor impact Vertigo/ dizziness Moderate impact Vertigo/ dizziness Severe impact Tremors Tremors No impact Tremors Minor impact Tremors Moderate impact Tremors Severe impact Swallowing problems Swallowing problems No impact Swallowing problems Minor impact Swallowing problems Moderate impact Swallowing problems Severe impact Speech difficulties Speech difficulties No impact Speech difficulties Minor impact Speech difficulties Moderate impact Speech difficulties Severe impact Spasms Spasms No impact Spasms Minor impact Spasms Moderate impact Spasms Severe impact OK Question Title * 18. Have you experienced any of the following mental health or emotional effects as a result of your MS? No impact Minor impact Moderate impact Severe impact Anxiety Anxiety No impact Anxiety Minor impact Anxiety Moderate impact Anxiety Severe impact Depression Depression No impact Depression Minor impact Depression Moderate impact Depression Severe impact Mood swings Mood swings No impact Mood swings Minor impact Mood swings Moderate impact Mood swings Severe impact Suicidal thoughts Suicidal thoughts No impact Suicidal thoughts Minor impact Suicidal thoughts Moderate impact Suicidal thoughts Severe impact Frightened Frightened No impact Frightened Minor impact Frightened Moderate impact Frightened Severe impact Confused Confused No impact Confused Minor impact Confused Moderate impact Confused Severe impact Loss or change of identity Loss or change of identity No impact Loss or change of identity Minor impact Loss or change of identity Moderate impact Loss or change of identity Severe impact More positive outlook More positive outlook No impact More positive outlook Minor impact More positive outlook Moderate impact More positive outlook Severe impact Happier Happier No impact Happier Minor impact Happier Moderate impact Happier Severe impact Increased sense of purpose Increased sense of purpose No impact Increased sense of purpose Minor impact Increased sense of purpose Moderate impact Increased sense of purpose Severe impact Greater appreciation of positive aspects of life Greater appreciation of positive aspects of life No impact Greater appreciation of positive aspects of life Minor impact Greater appreciation of positive aspects of life Moderate impact Greater appreciation of positive aspects of life Severe impact OK Question Title * 19. Have you experienced any of the following cognitive effects as a result of your MS? No impact Minor impact Moderate impact Severe impact Mental fatigue Mental fatigue No impact Mental fatigue Minor impact Mental fatigue Moderate impact Mental fatigue Severe impact Confusion Confusion No impact Confusion Minor impact Confusion Moderate impact Confusion Severe impact Inability to concentrate Inability to concentrate No impact Inability to concentrate Minor impact Inability to concentrate Moderate impact Inability to concentrate Severe impact Memory issues Memory issues No impact Memory issues Minor impact Memory issues Moderate impact Memory issues Severe impact Brain fog Brain fog No impact Brain fog Minor impact Brain fog Moderate impact Brain fog Severe impact Word finding Word finding No impact Word finding Minor impact Word finding Moderate impact Word finding Severe impact Direction finding Direction finding No impact Direction finding Minor impact Direction finding Moderate impact Direction finding Severe impact Object finding Object finding No impact Object finding Minor impact Object finding Moderate impact Object finding Severe impact Difficulties with planning Difficulties with planning No impact Difficulties with planning Minor impact Difficulties with planning Moderate impact Difficulties with planning Severe impact OK Question Title * 20. Have you experienced any of the following impacts on your work or finances and money as a result of your MS? (Tick all that apply) Reduced or lost my income Given up my work or medically retired Reduced my hours or responsibilities at work Changed my career Struggled with an unsupportive work environment Faced increased household costs None of these OK Question Title * 21. Have you experienced any of the following impacts on your relationships as a result of your MS? (Tick all that apply) Reduced my circle of friends Ended a relationship with a partner Found new friends Started a new relationship with a partner Reduced contact with my friends and family Became more reliant on a partner, friend or family member Felt lonely or isolated Impacted my ability to care for a partner, child or family member Other OK Question Title * 22. Have you experienced any of the following impacts on your hobbies, pastimes or social life as a result of your MS? (Tick all that apply) Stopped or reduced certain hobbies and pastimes Taken up new hobbies or pastimes Now unable to partake in the activities I once enjoyed Now unable to visit or access the places I once visited Had to buy additional equipment in order to continue a hobby/ pastime Other OK Question Title * 23. Overall, do you feel able to cope with your MS? Yes, I feel able to cope I usually feel able to cope but there are times I find difficult I sometimes feel able to cope No, I feel unable to cope OK Question Title * 24. Do you currently rely on a carer (paid or unpaid) to manage the impact of MS on your life? Yes, I am completely reliant on my carer I am reliant on my carer for some things/ some of the time No, I do not have a carer but I do need one No, I do not have a carer and I do not need one OK Question Title * 25. Do you currently require support with any of the following activities? (Tick all that apply) Help to get to appointments Help with the shopping Help with personal care eg washing / dressing Help with cleaning / household tasks Help with filling in forms Other support not listed above No OK Question Title * 26. Is there anything you would like more support with? (Tick all that apply) Managing or improving my mobility Managing my day-to-day activities Managing or improving my mood and emotions Dealing with my work Managing my money and benefits Meeting new people Managing relationships Managing friendships Finding new activities to do that suit my MS Managing fatigue Helping other people to understand MS Accessing health services Managing or improving thinking and memory impacts OK Question Title * 27. Have you made lifestyle changes with your MS in mind? (Tick all that apply) I use digital technology more I manage my time more carefully I have stopped or reduced smoking I have stopped or reduced drinking alcohol I eat an altered diet I have changed my exercise pattern or routine I take vitamins or supplements I try to reduce my stress levels I use aids and adaptations to help with mobility and household tasks I no longer drive Other OK Question Title * 28. Have you changed any of your plans for the future as a result of your MS? No Yes - please tell us how you have changed your plans? OK Question Title * 29. Thinking about your MS and its impact on your life, what concerns you most about the future? OK Question Title * 30. Are you willing to share your story? If so, we may contact you. No Yes - please leave an email OK Thank you for answering this survey.You can find more information about the MS Trust and the topics covered in this survey at www.mstrust.org.uk OK DONE
