Meeting Report – Saturday 25th April 2020  on ZOOM

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

Our Meeting was held on Zoom for the first time in our history. It was a great success.

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 –  Michaela Burton   

Michaela is a vestibular audiologist, hypnotherapist and mind coach.  Working at Leicester’s renowned NHS Balance Clinic. She is a keen supporter of our group and has already helped many of our members since our group was formed.

Michaela talked us through the subject of anxiety with balance conditions, and how this is perfectly normal and a common part of living with a balance condition.  With great advice such as looking to focus on small “wins” or nice moments in our day, and where possible trying to not dwell too long on thinking about matters that we have no control over.  Thank you for your calming words Michaela.

As well as working in the Leics. NHS balance clinic Michaela also is currently holding phone and video consultations at her private practice www.do-it-differently.co.uk or just email Michalea at michaela@do-it-differently.co.uk   for more information. 

Other details covered in our meeting

A Member in Distress

Some members were distressed to hear from one of our members about his current ill health, daily vertigo attacks and other serious health issues and his inability to access any treatment. I am delighted to report that our member is receiving an NHS consultation later this week, thanks to the help and advice from our members and supporters. I have been in touch with our member and he is grateful for all of your messages of support, the advice and help he has received. This is why we do what we do, together in a group we can help each other.

Prof Hugill’s Gadgets

Andrew Hugill talked us through his recommendations for many members, where especially we may have other sensory sensitivities. He showed us a room air purifier with HEPA filter – great for reducing the symptoms for hay fever sufferers, a personal air purifier and equipment useful for more zoom meetings. Thank you, Andrew, for your excellent descriptions of these.

It’s OK to talk about Balance Problems

With so much focus upon the horrors of the pandemic, many people have felt it may be inappropriate to talk of other medical challenges and personal problems. Our support group takes the stand that it is OK to talk about your balance issues and challenges. This in no way detracts from the pandemic or the problems and tragedies this is causing.  It is not a game of top trumps and an even bigger global health problem does not make your own daily challenge of standing up or being able to watch the TV any less of a problem. So lets make sure we still keep talking about balance.

London Road Clinic – open for video consultations

Caren Hodgson – Practice manager of London Rd Clinic Leicester, and a keen supporter of our group (and normally supplier of cakes at our physical meetings !)  supplied the following contact details for their ENT consultants during the lock down phase.

The following ENT Consultants are available for virtual (telephone) consultations during this crisis. These consultations will be fitted in around their NHS commitments.

Peter Conboy : 0116 2653660 George Murty : 0116 2388140 Peter Rea : 0116 2729029 or 07423 573519 or gillian.bowler@spirehealthcare.com  Anil Banerjee : 01455 822322

You can contact the consultants’ private secretaries on the numbers above to schedule a virtual new consultation or follow up consultation.

For therapists: Andrew Clements (Vestibular Therapist) – 07747001959  Judith Rogers (Speech & Language) – judith@stamfordrogers.net

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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