Meeting Report – Saturday 7th December 2019  

See the full Report on Our meeting and Listen to our Guest speakers 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]

First Guest Expert Speaker Was Toni Robinson   

UK Employment Law and HR Expert for over 20 years

“Being an Employee with a Balance Condition…”

When you are employed and are diagnosed with a disability, the questions that runs through most minds is “how supportive will my employer will be?” quickly followed by “will my job be safe?” … understandably, the questions play on your mind.

This interactive session is an opportunity to understand how disability in employment works, an employers obligations along with your obligations as an employee.

Toni has worked in the HR arena for over twenty years. Working in senior director positions, culminating two years ago in launching her own HR practice – Nucleus HR Limited.

Toni covers the very complex and very real issues faced by many employees who have serious balance disorders.  Anyone currently employed with a balance condition should watch this presentation, and many employers would also gain from this to understand their duty under UK law and avoid the potential “unlimited damages” if they fail in their duty as an employer.   

This presentation launches our own work on the subject of Balance conditions in the workplace and you will see further information on our web site in the new year

Our Second Guest Expert Speaker Was

Prof Andrew Hugill

Andrew is based at Leicester University, and is the founding Professor of Creative Computing. His personal  academic details being : Principal Fellow of the Higher Education Academy , National Teacher Fellow, Fellow of the Royal Society of Arts, PhD in Composition, MA in Musical Composition.

Andrew is also a member of our support group, suffering with Menieres and other complications.  You can find out more about Andrew and his work on  https://andrewhugill.com/

Andrews work in creating the world’s first balance disorder spectrum can be seen here  https://www.balancedisorderspectrum.info/

Andrews Presentation was  titled :- “Living with a serious balance disorder: a personal account”

Professor Hugill was diagnosed with bilateral Ménière’s Disease in 2009, after which he underwent a series of drug and surgical treatments. As a former Professor of Music and a renowned composer, the onset of this destructive balance disorder has profoundly affected both his professional and personal life. In this talk, Andrew will describe in intimate detail his long struggle with the balance and hearing problems caused by the condition. He will offer some advice on strategies for dealing with both the immediate and long-term effects of a balance disorder, and show how he has found his own personal pathway through to his present-day achievements.

After two excellent guest presentations it was then time for our Xmas Party to begin. 

What better than our very own member Richard Howarth performing his own work – “A Wonky Nativity”. Please enjoy Richards performance and thank you to Richard for writing this especially for our Xmas meeting. We have a star in the making !

Life On The Level – Annual Awards 2019

“The Dizzys”

Life On The Level Annual Awards are presented at the end of the year, and acknowledge both  long term help in running the group and or outstanding achievement.

As our first year, the following recipients will be able to say they that they were there to receive the very first ever “Dizzys”

Our 2019 winners are

Chris Richardson –  Co founder  – Bravery Award

For taking a huge leap in to the dark and coming on board as a co founder to help us find our way to build this support group.

Jola Higgs –  Co founder –  Behind the Scenes Work Award.

Where Jola has tirelessly worked to make the meetings happen, but without any limelight or attention, just quietly gets on with it – typically this last week buying and wrapping all of the secret Santa gifts – and buying and preparing all the buffet food- all to ensure our members have a good experience.

Caren Hodgeson –  The Enthusiasm & Energy  Award

London Rd Balance clinic practice manager – from the first contact Caren has just given 100% support and enthusiasm to helping our group, form being the “head of cakes” to ensuring the group is well known to the clinics patients and much more

Rupal Rajani  –   Group Awareness & Media  Award

Our very own Head of Media and Communications – & BBC Radio Leicester host. Rupal has been amazing at pushing for awareness for our group, managing the filming of members and much much more.

Kelly Martin – Social Media Award

Kelly has taken on the role of looking after the social media, despite a very busy life, and ensuring now that Facebook live streaming happens at every support group meeting, reaching all of those who can’t attend in person.

Michaela Burton – Professional Contribution Award

Awarded to a medical / clinical professional who has contributed greatly to the groups success. Michaela has given two presentations that have helped many sufferers deal in a better way with rehab and especially coping with Anxiety and fear.  All of this despite a ridiculously busy schedule.

Prof Andrew Hugill – Award for Significant contribution to the world of Balance Condition Sufferers.

Andrews work with Prof Rea on creating the world’s first Balance Spectrum was more than enough to win this award, but then going on to contribute to our group with Prof Hugill’s gadgets web section and now two presentations has been a wonderful gift to our group and many other balance sufferers.

Andy Corney –  The Outstanding Members Contribution  Award.

Andy has been very pro-active in wanting to help the group, and recently culminating in the first ever members story video , but then much to his credit inviting us in to film him at work and meet his very enlightened employers. All of his work helping others understand balance conditions and now see how employers can also play their part. Thank you Andy.

There are many others who have helped along the way this year so thank you to you all, but thank you to our award winners as quite literally we would not be here and we would not be doing the good work that we do – without you.

Thank you to our award winners, to our members and to everyone who has participated, contributed or just benefited in someway from what we do.

We also received lovely Xmas wishes from the staff of  VeDA – the US based Balance charity and from the staff of The Menieres Society – our support group is affiliated with both charities and we share their passion for helping anyone with a balance condition.

We Also received a Xmas Video message from our first member in Holland

Thank You Gerlinde for your lovely message

First Year Report

We briefly covered the successes of our group in just one year. Nearly 100 members, 450 Facebook followers, many thousands of video views. With feedback at every meeting that what we are achieving here is making a real difference to many lives. All from nothing, with no money and no staff.  A great start, but so much more to do next year  – and hopefully with your help.

Meeting Sponsorship needed

The Racecourse after allowing us free meeting facility use, now has to charge for the use of their excellent and ideal meeting facilities. Members were asked to consider if they new of companies who may wish to sponsor a meeting next year. The cost is £250 plus VAT per meeting. If you know of any possible companies please let us know.  Thank You

Informal conversations between everyone in small groups 

Finally, with a great deal of Xmas food and drinks, conversations were held between members, including our guest speaker, enabling friendship and sharing. This phase of the meeting lasted for over two hours, 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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