Meeting Report – Saturday 22nd June 2019  

See the full Report on Our meeting and Listen to our Guest speaker here –

Our Meeting was held at Leicester Racecourse, thanks to the generous support and community spirit of Rob Rob Bracken, CEO of Leicester Racecourse, and the hard work of Yvonne Holyland head of their hospitality department – Thank you from all of our members

Introduction

Where we clarified some guiding principles of the group and our meetings 

Confidentiality 

As a support group, we encourage all to speak openly about what issues that they face, but as such we ask everyone to respect everyone’s privacy and keep confidential any specific personal matters that are supplied during our meetings 

We are not doctors  

We are not medically trained or qualified, so we will never seek to advise on treatments or medical matters. Whatever advice or personal experiences are shared, everyone should always consult with their own medical and healthcare experts for the best medical care and advice. 

We are not a charity 

We are not a registered charity, we handle no money, we have no money. We are just people helping people.  Where we require money to fund leaflets or posters, we approach local companies for them to buy on our behalf. 

Positive Only 

We are a support group, with the emphasis being upon support, so we encourage everyone to seek the positive in what we discuss, in our members situations and our overall attitude to our mutual challenges. Let us always try to find solutions rather than be dragged down by the problems, and let us always give encouragement and hope to each other. 

Tolerance & Friendship  

The group is for everyone, and we can all seek different things from belonging to this group, but at the very least I hope we will all find some degree of friendship and comfort from meeting and knowing our fellow members.  Let us all be tolerant of differences and respect that balance disorders come in many flavours and affect any person in any walk of life and at any age – so we of all groups, should acknowledge and celebrate the variety and differences in our members. 

Charity Support 

The group is supported by the Menieres Society and VeDA as an official support group listed by both of their web sites. We support both charities in their good work for all things related to balance issues.  We have agreed to abide by their own good and common-sense guidance for support groups and we will encourage members to consider membership of either charity and sharing of member contact details with both at future meetings. Fund raising ideas on their behalf will also be discussed going forward. [See Our Friends section for details and links for both charities]

 

Guest Expert Speaker is Professor Peter Rea    

MA BM BCh (Oxon) FRCS (England) FRCS (ORL-HNS)  Consultant Ear, Nose & Throat Surgeon

Prof Peter Rea – MA BM BCh (Oxon) FRCS (England) FRCS (ORL-HNS)  Consultant Ear, Nose & Throat Surgeon

Meeting to be held at  Leicester Race Course, Leicester  – Hospitality Building – Premier Suite

As one of the leading experts in the field of balance and vertigo, Peters presentation was entitled

“Three recent developments in the world of balance”

Talking briefly on the latest evidence in Meniere’s treatment, developments in treatment for PPPD (for those with chronic imbalance), and new treatments for BPPV.

Peters work provides him insight into many areas of balance and vestibular illness, that will give many of our members great hope in what the future may bring in terms of treatment and understanding of these conditions. We hope you enjoy his presentation & the members Question and answer session

Such was the interest in Prof Reas presentation, that this was streamed live to the UK and USA

This can also be viewed on our facebook page

 https://www.facebook.com/lifeonthelevelsupportgroup/videos/385027962356011/

 

Following Prof Reas fantastic presentation and Q&A, the group then covered the following

Getting to know your fellow members –  Group Discussion  

Member to Member Contact Details Listing 

Our new facility of “member to member” contact detail sharing was discussed again. Members can elect to share their name & email address to a central list that is then circulated to all members on this list.  This will allow members to start contact and conversations with other members between group meetings. The contact information will not be shared with any members who have not opted in to be on this list. Members may be added to, or withdrawn, from this listing at any time. We hope this will encourage many conversations and contact between all members.   Over one third of our members have now opted in to this, and we hope that their new friendships and conversations will bring a lot of comfort and support to them.

Members Stories – Talking Heads

We will be launching a new section on our web site soon, that will feature our members stories. Their stories will explain how their lives have changed with the onset of balance issues, and give intimate accounts of real life challenges, the painful lows, but also details of their personal strengths and highs of working through the issues to find their way to solutions and a better quality of life. These stories will be shared anonymously , and it is hoped that these real life accounts will both help the general public understand how traumatic and disruptive balance conditions can be but also resonate with fellow sufferers who may then feel more likely to seek their own solutions with such as our support group or other avenues. Members response was very positive and we will be curating these precious insights over the coming months.  We have now added to this, a video version of members telling their stories, called “Talking Heads” , where Rupal is kindly conducting the filming and interviews with our volunteering members.

HighCross “Day Of Balance” Public Awareness  – Saturday September 21st

The support group plans to undertake its first “Outside” activity in the centre of Leicester – at HighCross on Saturday 21st September – that is also part of the International Balance Awareness week.  We will be inviting any professionals, acts, local clubs to come and perform on the day to tens of thousands of shoppers – If they have a specific and obvious balance skill as part of what they do. So look our for acrobats, stilt walkers, uni cyclists, gymnasts and more  on the day –  Helping to boost awareness to the general public of our support group and balance issues in general. Members again volunteered in good numbers to attend on the day (when details are confirmed) to help engage with the public and help to explain the significant and many issues related to having a balance condition.  Members will be contacted as and when there is any progress on this event.  Please also do contact us if you know of any suitable “balance related” acts that may be able to come along and perform.

Appeal for more Balance Buddies

We provide our members with a list of our “Balance Buddy Volunteers”, who are people with specific experience in balance issues (normally they have suffered with a certain condition, or they may have a professional skill or interest relevant to balance), The list provides the relevant background for each Buddy, and our members can then choose who they would like to contact. There is no limit to how many different Buddies may be contacted, as we are keen that each member has an opportunity to find the best fit for them.  Today we appealed for more volunteers to register as Balance Buddies, so we can have the widest range of backgrounds and different balance experience. I am pleased to confirm that nine members volunteered their time for this – that again demonstrates the generosity and passion of our membership.

Members Feedback

We strongly believe that the support group should always gain regular feedback and direction from its members to ensure that we are always doing the best we can and are aware of anythings that could be better. Please always give your opinions and feedback. Whilst we can never be perfect for everyone’s needs , we aim to always be a listening and improving community group.  Below is the summary of feedback provided at our last meeting.  Thank You

When asked “What is the best part of the group meeting for you?”

Meeting Benefits Percentage
Expert Speakers 100%
Meeting Other Members 88%
Being with people who understand 69%
Learning Helpful things 63%
Gives me hope 25%
Gets me out 6%

 

Guest speakers are a big hit with our members, as the quality of speaker has been superb, with expert knowledge very relevant to anyone with a balance condition. Obviously then as expected, the physical meeting of fellow balance sufferers is a huge positive for all who attend.  Contact with people who understand what it is to have a serious balance condition and learning useful advice and tips are high scoring.  Whilst “providing hope” may at first look like a low figure at 25%, this is mainly relevant to those with a current period of hardship and stress, so actually providing hope to a quarter of our membership is a very great thing and most rewarding for all involved with the group.  It was also pleasing to see that despite the great cakes and wonderful company, all attend for balance reasons, rather than just an outing.

When Asked “We are a free support group with no membership costs. What small charge to attend a meeting (to cover meetings & drinks costs) would be acceptable?   £5 ,  £3 ,  £2 (circle)”

The average Response selected was £3.80  As a trial for our next meeting August 31st – there will be a voluntary meeting contribution of £2 – that will not be mandatory.  Any money collected pays directly for materials used during the meeting, no surplus funds will ever be generated and any deficit is currently supported by the co founders personally.  Membership is free, caring for others is free and doing good for each other is free.

Some more lovely feedback from members at the meeting

which proves the value of being a part of Life On The Level , and is very wonderful to witness “good being achieved”

“It was great on Saturday, thank you for everything you do”
“The first people I have met with a common language and understanding of my daily life”
“That was absolutely brilliant”
“At last, a group that I can contribute to and communicate with people who understand my balance problem”
“Amazing to talk to others who actually understand how it feels”

 

Informal conversations between everyone in small groups 

Finally, conversations were held between members, including our guest speaker, enabling friendship and sharing. This phase of the meeting lasted for over an extra hour, as much of the benefit for our members is found in simply meeting people who share so much in common with themselves, and being able to talk to people who do understand completely what is being discussed.

Well done and thank you to all members and guests who made it to the meeting – your involvement is what makes each meeting so special and rewarding for all.

Please come and join us if you feel we can help and don’t wish to face your challenges alone.  You are very very welcome. 

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