Ménière s Society. Do you suffer from dizziness and imbalance as a result of a vestibular disorder?

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1 Survey 2015 Ménière s Society The Rookery, Surrey Hills Business Park, Wotton, Surrey RH5 6QT. UK. +44 (0) info@menieres.org.uk Registered Charity No Do you suffer from dizziness and imbalance as a result of a vestibular disorder? If so, the Ménière s Society requests your help. Please complete the following survey to help us improve the services we offer and gain a better understanding of your condition and how we can support you. There are 25 questions. The survey should take no more than 15 minutes to complete. Many thanks for your time. 1. Which of the following symptoms do you have? Vertigo (dizziness) Tinnitus Hearing Loss Fullness Migraine Balance Problems Drop Attacks 2. For how long have you experienced these symptoms? Less than 6 months Over 6 months but less than 1 year. 5 to 10 years Over 10 years 1 to 2 years 2 to 5 years 3. Which vestibular disorder have you been diagnosed with? Benign Paroxysmal Positional Vertigo (BPPV) Endolymphatic Hydrops Labyrinthitis Ménière s disease/syndrome Migraine Associated Vertigo (MAV) Not diagnosed Other, please state: 4. Who diagnosed your condition? I have not been diagnosed GP Other health professional, please state: ENT Specialist (NHS) ENT Specialist (Private) Ménière s Society User Survey 2015 (RCN: ) Page 1 of 7

2 5. How long was it between when your symptoms began and when you were diagnosed? Less than a month 1 to 6 months 6 months to 1 year Over 2 years I have not been given a diagnosis 1 to 2 years 6. How long after visiting your GP with your symptoms were you referred to a specialist? Less than 1 month More than 1 month but less than 3 months 3-6 months 6-12 months 1-2 years Over 2 years I have not been referred to a specialist 7. How long did you have to wait between being referred and seeing a specialist? Less than 1 month More than 1 month but less than 3 months Over 12 months 3-6 months 6-12 months 8. Overall, how happy are you with the service you received from your healthcare provider? Healthcare Provider Service received Excellent Good Ok Poor n/a GP ENT Specialist - NHS ENT Specialist - Private Audiologist Other Specialist (e.g. Neurologist) - NHS Other Specialist (e.g. Neurologist) - Private Vestibular Physiotherapist Other, please state: Ménière s Society User Survey 2015 (RCN: ) Page 2 of 7

3 9. Which of the following tests have you undergone? Please tick all that apply. Audiogram (hearing test) Caloric Test (warm or cold water in ear) Electrocochleograph (measuring electrical activity in the ear) Posturography (computerised balance test) Other, please state: Hallpike Test (lying down quickly and head turned to side) Tympanometry (measures middle ear function) CT/CAT Scan (specialised x- rays) MRI (Magnetic Resonance Imaging) Scan VEMPs (electrical response to sound in the ear measured at the neck or eyes) 10. Which of the following treatments do you use or have used in the past? Treatment please tick all that apply Current Previously Betahistine/Serc Prochlorperazine/Stemetil/Buccastem Cinnarizine/Stugeron Diuretics, please state: Other medication, please state: Vestibular Rehabilitation (balance exercises): Physiotherapist-led Vestibular Rehabilitation (balance exercises): Self-led Hearing aid Bone Anchored Hearing Aid (BAHA) Cochlear implant Meniett Device Self-management Peer support Complementary therapy, please state: Other, please state: 11. Have you had any of the following surgical procedures? Procedure please tick all that apply Yes Grommet Gentamicin Injection Steroid Injection Sacccus decompression/endolymphatic sac surgery Neurectomy Labyrinthectomy Ménière s Society User Survey 2015 (RCN: ) Page 3 of 7

4 12. Does anything trigger your symptoms? No Yes. Please state: 13. Have you made any of the following changes to your diet or lifestyle? Diet and lifestyle Low or no caffeine Low or no salt Low or no alcohol Supplements Stress management Taking regular exercise/a physical activity Other, please state: Yes 14. Have you experienced a period of remission? No Yes: Less than 1 month. Yes: 1-2 years Yes: 2-5 years Yes: 5-10 years Yes: More than 1 month but less than 1 year. Yes: Over 10 years 15. Has anyone else in your family been diagnosed with a vestibular disorder? No Yes. If you are happy to, please state their relationship to you and their diagnosis: 16. Have you also been diagnosed with another, non-vestibular, condition? No Yes. If you are happy to, please tell us which condition(s): 17. Are you a member of the Ménière s Society? Yes, I am a member. I am no longer a member but I was a member in the past. Please tell us why you discontinued your membership: No, I am not a member of the Ménière s Society. Please give your reason for not joining, then go to Q19. Ménière s Society User Survey 2015 (RCN: ) Page 4 of 7

5 18. What was your reason for joining the Ménière s Society? To find out more about my condition To see and learn from others experiences To receive support material, including Spin magazine To support research Other, please state: 19. Is there a peer support group in your area and do you attend the group? a Yes I attend group meetings I don t attend the group b No I would attend if there was a group I wouldn t attend a group c Don t know I would attend if there was a group I wouldn t attend a group 20. Which Ménière s Society services have you used, and how would you rate them? Services Used Rating Tick all that apply Excellent Good Ok Poor n/a Members Information Pack Spin magazine Factsheets and information leaflets Telephone information line enquiries Website Balance Retraining and Controlling Your Symptoms booklets Local Group Contact List Penpals AGM & Conference Facebook Twitter Instagram 200+ Club Christmas Cards Christmas Raffle Fundraising/Awareness Pack Ménière s Society page on third party websites (e.g. Justgiving, Easyfundraising) Other, please state: Ménière s Society User Survey 2015 (RCN: ) Page 5 of 7

6 21. Are there any other services in addition to those listed above which you would like us to provide? 22. Are you? Male Female Prefer not to say 23. Age Category 17 or under Prefer not to say 24. Country of Residence Please state: 25. Please use this box to add any additional comments: Thank you very much for taking the time to complete this survey. Your feedback is valued and very much appreciated! The next page explains how to submit your survey Ménière s Society User Survey 2015 (RCN: ) Page 6 of 7

7 How to submit your survey: By By post: Please save your completed form to your computer Open a new with Survey 2015 in the subject line your completed survey to info@menieres.org.uk Please print and post your completed survey to to us at: Meniere s Society, The Rookery, Surrey Hills Business Park, Wotton, Surrey RH5 6QT. Results of the survey will be published on the Ménière s Society website and in our magazine, Spin, in due course. The following information is optional. If you would like to receive further information about the Ménière s Society, please tick this box and provide your name and address details below. Please also complete your details if you would be happy for us to contact you about your survey responses, should we have any further questions. Name: Address: Telephone: Ménière s Society Membership Number if applicable: Every so often we d like to send you information we think may interest you. If you do NOT wish to receive communications from the Meniere s Society (other than anything requested above), please tick this box We take data protection seriously. We will not use any of your information without prior consent. We will never share your information with any third party organisations unless you have provided explicit consent. You can withdraw your consent to be contacted, or amend your permissions, at any time by simply contacting the Ménière s Society. Ménière s Society User Survey 2015 (RCN: ) Page 7 of 7