At the National Eye Research Centre, we have done some research that shows that not enough people living with eye conditions get to hear about eye research. We also know that recruiting patients to clinical trials is a real challenge for researchers which means that, at times, what could be promising research goes nowhere.

We want to change all this, because finding new solutions for visual impairment is critical, and we know how empowering and hopeful it can be to know that scientists and clinicians are working to find better ways to diagnose, care for, and treat eye conditions. Better still, that we can all play a part in finding solutions.

In order to create better information channels, we are asking for the views of individuals directly affected by eye conditions, and also their carers’. We have created a survey which we are circulating to patients support groups across the UK, and also to the general public. You can find the link to the survey below:

https://www.surveymonkey.co.uk/r/SM9F2S7

The survey is anonymous and we will send a summary to any participating group once the results have been received. Hard copies and large print copies of the survey can be provided, please contact Newcastle Vision Support.

National Eye Research Centre website link: https://www.nercuk.org/

Are you living in Tyne & Wear, blind or partially sighted and interested in advocating for others?

Join our community of blind and partially sighted advocates and help support visually impaired people in your area to live the lives they want to lead.

What does a Sight Loss Council member do?

As a Sight Loss Council member your duties may include putting forward local issues affecting your community at Sight Loss Council meetings (ie pavement parking, guide dog refusals etc) or taking part in accessibility testing sessions, forums, seminars and contributing to public consultations.

If you’re interested in gaining advocacy experience, you are a great communicator and confident with technology (or willing to learn), then we want to hear from you!

What do the Sight Loss Councils do?

Sight Loss Councils are currently expanding their reach across England to give people who are blind or partially sighted the opportunity to influence positive change and improve services at a national and local level.

Each Sight Loss Council aims to make a difference by representing the voice of blind and partially sighted people in the key areas of health, employment, education, transport, technology, and sport. If you have a particular interest in any of these areas, please let us know

Examples of Sight Loss Councils’ work include:

· providing GP Surgeries in Bristol with visual awareness training

· working with StageCoach on new audio-visual announcements on their buses in Gloucestershire

· providing accessibility feedback on a healthcare app in Birmingham

· running accessibility workshops with the Apple store in Liverpool.

Where do we work

We currently have Sight Loss Councils in Bristol, Gloucestershire, Birmingham, Black Country, Merseyside, Greater Manchester and we are launching two brand new SLCs in Tyne and Wear and Bedfordshire.

Why volunteer with us?

We will provide you with core training and ongoing opportunities to learn and develop in your role.

Skills you may learn include advocating for yourself and others, improving your confidence in public speaking, organising events and much more. We’ll focus on your strengths and interests and help you build upon them. These are all skills that will really help boost your CV if or when applying for jobs!

How do I join?

To find out more about becoming a Tyne & Wear Sight Loss Council member, download the volunteer role description below and email volunteering@pocklington-trust.org.uk to let us know which Sight Loss Council you are interested in joining.

Please click the following link to download the Volunteer Role Description.

RNIB, Guide Dogs and Thomas Pocklington Trust are jointly conducting an invaluable research to understand the realities of life for blind and partially sighted people in the UK.

The study will help to improve support and services for those with a sight impairment.

For further information or to register to take part in the survey, please click on the image below.

https://www.healthcareopinions.co.uk/projects/whole-uk/take-part-in-a-vital-study-into-the-lives-of-blind-and-partially-sighted-people/?fbclid=IwAR0bSxOiYGXUyBDuO_mjgMART2zJ3CWKd6kWyHG0GqZZpKJookua8GAmXhM

The Macular Society have organised 2 information Days in the North East for patients. This will be held in August via teleconferencing. Please see below from Julie Swan (Regional Manager) for further details.

Patient Information Days

Stephanie Cairns, BSc(Hons) MCOptom Pgd Cert.Clinical Optometry & Chair NTW Local Optical Committee, will talk about the support available during Covid 19 and how to access help if you need it.

Friday 7th August 2020 at 10.30am will be Wet Macular specific – benefits of continuing treatments and changes to eye clinics to help people continue treatment during this time.

Friday 21st August at 10.30am will be Dry Macular specific.

If you would like to attend please register beforehand with Julie Swan by calling 07904 315605 and so she can send you details on how to join. Also you can submit questions to Julie before the events so she can forward to Stephanie Cairns.

https://www.macularsociety.org/

Twitter@macularsocietyNE

For anyone requiring support or have an enquiry, please call 0191 2327292. Unfortunately staff members will only be available to take phone calls for the following times:

• Tuesday 11am – 3pm
• Thursday 11am – 3pm

All other days or times you can either leave a message on our answer machine and we will try to get back to you as soon as possible or you can continue to ring the following mobile numbers we have already provided:

• Sue 07958171431
• Jude 07958171424
• Jacqui 07506720593

Take care and stay safe.

Due to the Coronavirus the Board of Trustees of NVS have voted to cancel the 2020 AGM which was scheduled to take place in July.

Further details can be found on the letter which all our service users should have received by post. If you have not received a letter and would like a copy then please contact the office on 0191 232 7292. Due to the current situation staff will only be in the office on Tuesday and Thursday 11am – 3pm for telephone enquiries.

I hope you are all staying safe during these challenging times.

As you know staff have been working from home, ringing members for regular chats and when possible helping with queries. They have all done a great job and on behalf of you all I would like to thank them all for their dedication and commitment to helping others.

We are now starting to move towards working from the office in line with social distancing. We will not all be in together so we will continue to work from home on the days we are not in the office.

I know many of you are wanting to get back to groups etc and are missing the social aspects which, under normal circumstances we provide. We are following Government guidelines so unfortunately we can not start up the groups at the moment, but we are looking at alternative methods to enable you to meet up virtually.

Moving forward there will be staff in the office on a Tuesday and Thursday for any queries you may have, regrettably there will be no home visits until further notice.

Take care and stay safe everyone, we are still here to support you.

Thanks Sue

Retina International are currently conducting a study that aims to bring to light the issues faced by Wet Age-related Macular Degeneration (wet AMD) and Diabetes-related Macular Edema (DME) patients and their caregivers owning to routine anti-VEGF injection treatment.

They have recently launched a treatment survey and are looking for participants. If you have wet AMD or DME or you are a caregiver and you would like to participate then please click on one of the following links to complete the survey.

Wet Age-related Macular Degeneration (wet AMD) Patient Survey https://www.surveymonkey.com/r/wetAMDPatientSurvey

Wet Age-related Macular Degeneration (wet AMD) Caregiver Survey https://www.surveymonkey.com/r/wetAMDCaregiverSurvey

Diabetes-related Macular Edema (DME) Patient Survey https://www.surveymonkey.com/r/DMEPatientSurvey

Diabetes-related Macular Edema (DME) Caregiver Survey https://www.surveymonkey.com/r/DMECaregiverSurvey

If you would like further information regarding Retina International then please click on the following link http://retina-amd.org/

We hope everyone is coping during these unprecedented times.

At Newcastle Vision Support we are always striving to improve our services. We would appreciate it if you could help us complete 2 surveys using the links below so that we can gain valuable feedback for support and services we provide.

https://www.surveymonkey.com/r/J2ZNV86

For those that have used our Benefits service provided by Philippa, please can you complete the following survey: https://www.surveymonkey.co.uk/r/6BC5Y7P

Sue and all the staff would like to thank everyone for continuing to support us.

Stay safe.