Calling all Secretaries or Presidents of all Clubs, Groups, Societies, Associations, Institutes, etc. in the UK. Please, can you lend your support to SIGN our Petition to help SAVE the BBC Red Button Teletext Service from permanent closure in spring 2020. This is a vital service for many disabled and elderly people in the UK and is critically important in preventing further social isolation and loneliness in the community and should be kept on permanently.
To sign it contact Sarah Gayton by PM or by email: email@example.com or by PM us or email to firstname.lastname@example.org, NFBUK only need a YES from you and the NAME of your Club or Group etc. Sarah is coordinating this campaign for the NFBUK.
Many people think the red button teletext service was saved from switch off however this was only temporary and we still need to save in permanently.
The NFBUK will be meeting the BBC shortly to explain how important this service is and will re-submit this Petition. Thereafter the BBC will decide whether the BBC Red Button Teletext service will continue or be permanently closed down. To date the petition has 252 organisations supporting it from across the UK which include over 50 Age UK organisations.
Many people of all ages have contacted the NFBUK in desperation because they, or people they know, rely on this service for information. This included people who are visually impaired, deaf, hard of hearing, disabled, elderly and housebound etc. And also people who do not have Internet connection by means of computer, tablet or smart phone. Closure of this service will affect many people because it is a very easy to use format in a static text form.
Full details of the petition can be obtained by contacting Sarah or the NFBUK.
Individuals can also sign the petition by emailing the NFBUK.
Your contact details, if supplied, will not be passed on to a 3rd party by the NFBUK.
Your help to SHARE this post will be greatly appreciated!
This exciting new free to attend event in our annual calendar will be held on Friday, 27 September at the Kent’s Hill Conference Centre in Milton Keynes. Registration opens at 9.00am with the welcoming address at 10.00am. We expect the event to end at 3.30pm.It is a one-day conference aimed at education, health care and social care professionals and volunteers supporting those with inherited sight loss conditions. This will include Eye Clinic Liaison Officers (ECLOs), Rehabilitation Officers for the Visually Impaired (ROVIs), Qualified Teachers of the Visually Impaired (QTVIs), Mobility Officers, Clinicians, nurses and other medical professionals.
The Conference will allow you to:
Hear the personal stories of those affected by inherited retinal conditions, get an update on the latest research including genetic testing and counselling, the search for treatments and how patients can get involved in research.
Further your understanding of the conditions and the unique challenges faced by those living with or affected by inherited retinal conditions to help you provide the best support.
Network with other professionals working in this area and learn from each other’s experiences
Speak with exhibitors , including our generous sponsors Oxsight, and try out the products available to support those living with inherited retinal conditions.
Learn how Retina UK can support you and those you care for/support – including services and resources available.
Understand what support/information/resources are available from other charities and organisations.
Meet Retina UK’s friendly, knowledgeable staff.
Kents Hill Park Conference Centre is an easy-to-access central location about five miles from Milton Keynes Central Train Station and close to the M1 Motorway. There is also accommodation and free parking available on site.
If you have any questions or would like to speak with us about this event, please don’t hesitate to contact us at info@RetinaUK.org.uk or call us on 01280 821334.
Retina UK recently published its unique insight into the experiences of those living with inherited retinal conditions.
Almost 1,000 people completed a survey earlier this year to help the charity understand the real-life experiences, challenges and expectations of those living with these conditions. Over half (53%) say their sight loss has a severe or very severe impact on their quality of life and loss of confidence, anxiety and stress are the biggest emotional or psychological impacts of sight loss.
Tina Houlihan, Chief Executive, said: “We are an organisation entirely focussed on people living with inherited retinal dystrophies; to make the biggest difference for our community and have the right priorities we need to constantly learn more about real-life experiences, challenges and expectations of families living with these conditions.”
Luxturna is currently undergoing appraisal by the National Institute for Health & Care Excellence (NICE) and the Scottish Medicines Consortium (SMC), which provide guidance to NHS England and NHS Scotland about which treatments they should fund. (Wales and Northern Ireland are likely to follow England’s lead.)
Retina UK is actively involved in this process; we are working hard to make sure that our community’s voice is heard and that NICE and the SMC fully understand the enormous difference that an effective gene therapy could make to the lives of young people with inherited sight loss.
We expect NICE to publish their formal guidance on NHS funding in December 2019. If the outcome is positive, the NHS will need to establish a pathway for treatment and commission a small number of specialist treatment centres. All being well, Luxturna may be available on the NHS from spring 2020.
Retina UK is excited to be holding our first ever conference specifically for professionals who support our community on Friday 27 September 2019. You will hear the personal stories of those living with inherited retinal conditions, gain an insight into the latest research including genetics, and learn about the psychological impact of a diagnosis.
Our Retina UK Local Peer Support Groups enable individuals and families to get to know each other
and engage with Retina UK.
Group meetings are scheduled in Oxford (12 September), Edinburgh (28 September), Merseyside (30 September), Glasgow (5 October), Isle of Wight (2nd Monday of each month), Taunton (12 October) and London (26 October).
Our final information day of the year is coming to Belfast on Thursday 24 October 2019 (10.00am – 4.00pm). Amongst many other speakers we have Professor Peter Humphries, a leading researcher of genetics of degenerative diseases of the retina joining us. This event is a great opportunity to find out more about Inherited Retinal Dystrophies (IRDs); the latest research, to put your questions to the experts, meet other people and engage with the charity.
Retina UK would like to engage more closely with the professional community and to enable us to do that most effectively, we’d like you (our existing professionals’ community) to tell us how we can best support your work. That might be holding more information days, providing information and leaflets or something else entirely. Please get in touch with Matthew Carr and Denise Rawden, our Regional Services Managers to let them know services@RetinaUK.org.uk.
Venue: Leeds Civic Hall
Date: Friday 1st June 2018
Time: 10:00 – 4:00
Collaborating with Blind In Business we are bringing you a day of handy hints and tips and invaluable networking, to help you in your pursuit of employment.
The day will provide information on the access to work application process, useful technology in the workplace, when and how to disclose your disability and ideas for successful CV writing.
You will also have the opportunity to undertake a mock interview with some of the UK’s top employers to help provide feedback on how to approach the real thing.
Alongside all of this there will be inspirational employers and employees sharing their stories of finding employment.
To book onto the event, please click here to visit our Eventbrite page where you will be asked a couple of questions about dietary or access requirements. Or please call the connect team on 0303 1234 55 55 and they will be happy to register you onto the event.
We only have 55 places on the day, so please don’t hesitate to book.
Thank you very much for taking the time to learn about this event.