Tag Archives: RP Fighting Blindness

UK national eye health and hearing study: case for investment

6 August 2019
Source: UKNEHS

UK’s first vision and hearing survey aims to capture vital data on UK issues

A lack of accurate data is contributing to a £58billion bill for vision and hearing loss in the UK, according to a report published today that calls on the Government to support the first ever national survey of the UK population’s sensory needs.

It is estimated that around 2 million people in the UK are affected by partial sight loss, and this is expected to rise to 2.4 million by 2024. The number affected by hearing loss is estimated at 11 million, and this is also rising.

These issues cost the UK economy £58billion in total every year. This takes into account, medical costs, for example falls and fractures caused by visual impairment, an increased risk of dementia due to hearing loss, service costs, and reduced employment. Around 50 per cent of all sight loss is believed to be preventable.

Researchers and charities have now come together to campaign for the first ever UK National Eye-health and Hearing Study (UKNEHS). The data generated by a detailed survey will help cut the cost to the economy and better inform policy makers and service providers, with a focus on prevention.

Professor Sir Michael Rawlins, Chair of the Executive Board of the UKNEHS said “The UK has not invested effectively in collecting population data for vision and hearing loss. The UKNEHS is of vital importance to current and future generations if we are serious about providing quality, evidence-based services in these areas.”

The case for investment, published today by Vision UK, which works with organisations in the eye health and sight loss sector, outlines the details of the study. It would see 25,000 participants undergo an eye and hearing examination and complete a standardised general questionnaire.

Lord Colin Low, co-chair of the All Party Parliamentary Group on Eye Health and Visual Impairment, stated: “If the UK is serious about reducing the levels of preventable visual impairment and hearing loss, then we must have the data that the UKNEHS will provide.

“If we don’t fund this kind of research we are saying that we accept that people living in the UK will lose their vision and hearing due to preventable causes, and that it is OK for them to live with hearing and vision loss that is treatable.”

The study will determine the prevalence and causes of vision impairment, blindness and hearing loss in the UK population aged 50 and over.

The study will also measure the detection and treatment coverage rate of major eye diseases and associated conditions, such as diabetes, in order to understand the effectiveness of current services.

Professor Rupert Bourne of Anglia Ruskin University (ARU), Chief Investigator of the UKNEHS, said: “Growing demand from an ageing population and increasing incidence of long-term conditions will exacerbate existing issues in the system. However, policy makers are completely in the dark about the scale of the problem because no comprehensive survey has ever been done in this country.

“Other countries across the world regularly survey their populations, allowing them to make informed decisions about care and treatment, identify trends and take action.

“We know the costs – to the NHS and the UK economy – of these issues runs into the tens of billions of pounds every year, so it is imperative that we understand more about our eye and hearing health, so that we can better address people’s needs and reduce costs.”

The UKNEHS brings together a number of partners including ARU, The Thomas Pocklington Trust, The Royal College of Ophthalmologists and the College of Optometrists.

The report has been submitted to the UK Government. The UKNEHS needs the public to ask their MPs to support the project – e-mail contact@UKNEHS.org.uk to find out how.

Ends
Notes to Editors
ARU is an innovative global university, brimming with ambition. Students from 177 countries gain qualifications with us in four continents. Students, academics, businesses and partners all benefit from our outstanding facilities; we’ve invested £100 million over the last five years and plan to invest a further £91 million over the next five years.

ARU’s Research Institutes and four faculties bridge scientific, technical and creative fields. We deliver impactful research which tackles pressing issues and makes a real difference, from saving lives to conserving water. Our academic excellence has been recognised by the UK’s Higher Education funding bodies, with 12 areas classed as generating world-leading research.

We are ranked in the world’s top 350 institutions in the 2019 Times Higher Education World University Rankings, and in 2016 we featured in a list of the 20 “rising stars” in global Higher Education compiled by strategy consultants Firetail.

For more press information please contact:
Jon Green on t: 01245 68 4717, e: jon.green@anglia.ac.uk
Jamie Forsyth on t: 01245 68 4716, e: jamie.forsyth@anglia.ac.uk

Retina UK Professionals’ Conference

Retina UK, click here to view their website
Retina UK, click here to view their website

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.

Sponsored by:

 

OXSIGHT Brochure

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Findings from our sight loss survey

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.”

Read the full report on our website

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Awaiting funding decision for Luxturna

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.

Read the full article on our website

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Events
Professionals’ Conference

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.

Find out more and register

Local Peer Support Groups

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).

Find out more and register to attend.

Northern Ireland Information Day

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.

Find out more and register

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We’re here to help

Retina UK offer a free telephone and email service  to those living with inherited sight loss, their family and friends, employers, and health, social care and education professionals.

They can provide information and/or signposting on employment matters, mobility aids, benefits or technology to allow you to better support your clients?

Retina UK’s helpline team all have personal experience of inherited sight loss conditions.

Call: 0845 123 2354
Email helpline@RetinaUK.org.uk
Open 9.30am to 9.30pm Mon to Fri

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Largest meeting of families with Usher syndrome

Over 70 people gathered in Birmingham for the largest meeting of families living with Usher syndrome in the UK.  Retina UK and Sense supported Usher Kids UK to hold its first family event in June.

Retina UK’s Matt Carr, said: “It was a really positive event and a fantastic example of how Retina UK works with other groups to make the biggest difference for our community.”

Read the full article on our website

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How can we best support you?

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.

RP Fighting Blindness Information Day – 20th July

Friday 20th July
10:00am till 4:00pm
RP Fighting Blindness would like to invite you to an Information Day focusing on Inherited Retinal Dystrophies (IRDs) and syndromes, including Retinitis Pigmentosa and Usher syndrome.
The event will include presentations from the following:
• Mr Martin McKibben, Consultant Ophthalmologist, Leeds Teaching Hospital
• Mr Raj Mukherjee, Consultant Ophthalmologist , Leeds Teaching Hospital
• Oxsight Smart Glasses
• Leeds & Bradford Rehabilitation Teams
• There will also be talks from a number of patients living with these conditions
• Chance to meet and discuss what support is available with local organisations supporting patients.

This is a great opportunity to find out more about Inherited Retinal Dystrophies (IRDs); the latest research information, to put your questions to the experts, meet other people and engage with the charity.

 

This event is free of charge, and is open to:
Anyone affected by RP or an inherited retinal dystrophy and their families
Professionals working with affected families

REGISTRATION IS REQUIRED AND PLACES ARE LIMITED, SO PLEASE DO CONTACT US TO CONFIRM YOUR PLACE!

If you would like to attend the event or you have any questions, please contact the RPFB office for further details.

Telephone: 01280 821334 / email: services@rpfightingblindness.org.uk
Post: RP Fighting Blindness, P.O Box 350, Buckingham MK18 1GZ

Click here for a programme of the day