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Focus Group Meeting 4/2/2012

Advocacy Lobbying wanted a voice Issues: Funding for surgery, free prescriptions for various mouth and eye care products. Raising Awareness (Awareness day or week) Approach MPs (invite to launch) Normalising Facial Difference

Youth Zone with pages for the following


Adolescents Younger children Parents Access to a buddy Sign posting to how to get help, (e.g. psychological care in adolescence). Information and advice to schools and colleges about issues and how to handle these within a school environment Issues raised were bullying, isolation, only feeling normal in a safe environment like hospital, GOS, therapy session.

18 30s Zone with pages for the following


Forum/Chat room specifically for this age group Social Skills/ Interaction Skills Interview tips and advice Sign posting to courses, training, workshops etc and other organisations

Sign posting for the following: Specialist centres across the UK Where to get specialist help for specific issues

Page for partners, friends and family. THE GROUP DID NOT LIKE THE TERM CARERS Page for employers Page for each disorder personal stories on each page should be a mix of male and female so that if there were specific issues for gender these were represented equally.

Individuals may be happy to tell their stories but should be allowed to do so with or without pictures/videos. A representative for each disorder on the community board would be involved with content and maintenance of these pages. Donation page Virgin Money Giving (Just Giving takes a % of the donation) Branded merchandise to sell on line, e.g. plastic wallets for rail cards etc Membership
Membership to be set at 20:00/yr to gain access to forums, chat rooms and downloads. Also quarterly newsletter. Membership would give you a password to access above. Membership forms should have a donation box Membership data

About Us Page Value Statement Vision Code of conduct PR and Media Approximately 15 real life stories that can be used in the media Support Page Contact information for support groups. How to set up your own local support group? Links to other organisations. Positive stories about good outcomes Newly diagnosed and long term issues Tips and useful advice Self Help Specific support around the 2 yr marker where spontaneous recovery has taken place and issues arise about coming to terms with not regaining normal function. Felt this could be a low point along the journey for which there should be specific acknowledgement and support. In what form should support come? Mutual. DISLIKED APPROACH BE POSITIVE, ITS A GOOD ATTITUDE THAT HEALS YOU as at low times may not feel at all positive and then feel that you have failed to adopt the right attitude. Contact numbers/email addresses for someone to talk to but prefer this person to be psychotherapist or similar or possibly other person who has firsthand experience of facial palsy. Would like a representative for each disorder. Concerned that there should definitely be a representative for

1. Children and adolescents. 2. Pregnant women or new mothers diagnosed with Bells Palsy or similar. After care advice e.g. eye care, dental care, speech, eating and drinking recipies for people with swallowing problems. Specific advice for the elderly, for example, how to administer eye drops Information leaflets should be made available at GP surgeries, out patient departments, dentists, opticians, as need to raise awareness of facial palsy and its consequences amongst GPs, Dentists, Opticians especially in relation to aftercare.

Zone for sharing information about treatment, encouragement from others regarding maintaining exercise programmes etc

Fund Raising Page How to fund raise help/advice/ideas Merchandise to help with fund raising e.g. banners, balloons, collecting tins etc that can be bought from the website Photos of fund raising events etc