Meeting Report – Saturday 8th August 2020  on ZOOM

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

Our Meeting was held on Zoom , and has produced another great presentation for and one with a balance condition

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 –  Andrew Clements   

MC SP  Chartered Physiotherapist

The Presentation was –

“Vestibulopathy. Symptomatology. (including Covid19 effect)”

 This presentation will look at what ‘Vestibulopathy’ means, and the symptoms created by vestibular disorders and will include my experience of how the corona virus pandemic has influenced people with vestibular disorders.

[Before you click and watch the video you may wish to read the notes and appeals by scrolling down first – thank you]

Click Here to View the meeting on YouTube

Or 

Click Here to View the meeting on FaceBook

Andrew has worked for over 25 years as a physiotherapist, initially in Australia but he moved to England in 1993 to take up a specialist post at the Leicester Royal Infirmary. Initially he was seeing difficult musculoskeletal problems but developed an interest in dizzy and off balance patients.

His interest in this area developed and he traveled to the USA to further his knowledge. He helped set up the Leicester Balance Centre initially as a pilot project, but then once its success spread he moved out of the physiotherapy department completely and now mainly sees ‘vestibular’ patients (dizziness and balance problems) at the Leicester Balance Centre and London Road Clinic. He has worked with the NHS Modernisation Agency to try and improve services for people with balance problems.

It was within the Balance Centre that he first really encountered Menieres Disease and its effect on peoples’ lives. Working with Peter Rea (and other ENT colleagues) provided the opportunity to link with the Menieres Society, and from that the chance to work as a Trustee with the society .

Andrew is a valued supporter of Life On The Level and continues to share his knowledge and wisdom with our members very generously.  We refer to him as “Mr Balance”

Other details covered in our meeting

Members Questions

Q&A’s were hosted and moderated by BBC’s radio Leicester’s  Rupal Rajani

Many Members were able to ask Andrew questions relevant to their own circumstances, and Andrews general advice was well received by all. 

Members Appeals and information

We are currently appealing for any members to come forward to share their own experience with another member on the following subjects please

BPPV – a member is considering surgery, so contact with others on this subject is welcomed.

PIP – a member is encountering difficulty in receiving disability benefits, so help with this is welcomed.

Retirement with a balance disorder – a member is about to retire and is looking for any insight or helpful tips relevant to having a balance condition

Please email Kevin to offer your help on any of the above appeals. Thank you.

General Appeal

Member 2 member contact

As resumption of our own physical meetings may still not happen at all in 2020, there is even more need to reach out to fellow members and have the odd email, text or conversation. Whilst some of us may have very good family and friends support, others are very isolated and with few contacts. If you have not yet opted in to our “member 2 member” contact network, please consider this now.  Only other members in this network will share their email and or phone details and first names only. Please consider joining this and you can also then support others and be supported at the same time.  Thank You.  [Please Contact kevin@lifeonthelevel.org ]

Members Stories

Member stories are proving to be very effective and very well received by many non members, many who are just starting their journey with a balance condition. Reading your story and your experiences and emotions helps many realise that they are not alone with these conditions and their is hope for a better future.  Please share your story with us. It can be anonymous, in writing only or as a video.  We all have a story in us, so lets get this out, shared and watch it help others ! [Please Contact kevin@lifeonthelevel.org ]

Social Media Content

Kelly has been doing a brilliant job building our Facebook following and keeping fresh content flowing. Kelly asked for any members to please get in touch (via Facebook or via Kevin on email) with any ideas on content, or adding opinions or views. So please do contribute anything you can to help us create even more interesting Balance related content

End of Meeting Notes 

And thank you to all participants and members – as “we couldn’t do this without you “

London Road Clinic – open for video consultations

In addition to Andrews NHS work, he also has a private practice in Leicester – see details here

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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