NEWSLETTER No. 371

A new initiative has been launched, led by the Powell Family Foundation, Thomas Pocklington Trust and Fight for Sight, designed to transform our understanding of services and resources available to children and young people with vision impairment (CYP with VI) in the UK. This programme will deliver a comprehensive mapping of services and user facing resources nationwide, supported by rigorous provider verification through surveys, targeted engagement and follow up interviews. By working closely with partners and drawing on rich demographic and contextual analysis, we will build a clearer picture of the local and national landscape. The findings will be brought together into accessible, practical outputs that will equip the sector with the evidence needed to drive informed decision making and strengthen support for CYP with VI.

The programme was formed in response to long standing challenges:
• fragmented provision,
• inconsistent access to specialist support,
• gaps in resources and coordinated pathways, particularly at key life transitions.

Across the sector, available support and resources provide valuable assistance to CYP with VI. However, existing research confirms that factors such as ongoing budgetary pressures, a lack of suitably qualified staff in some areas, and the challenges of engaging with a diverse and thinly spread population result in a disparity of services. This means that CYP with VI are often not getting access to the support and information they need, when and where they need it. These challenges present a clear opportunity to drive strategic change through coordinated investment and sector collaboration. The programme aims to accelerate sector- wide improvement by working with national and local organisations. A core focus is to put lived experience at the heart of this project and to ensure the funding is evidence-led.

Read the full article here: https://www.fightforsight.org.uk/news-and-insights/news/charity-news/announcing-the-children-and-young-people-with-vision-

“I hallucinated a tiger walking down the street.”

Northern Ireland Ballymoney man, Alex Patterson’s hallucinations began 15 years ago. Alex sees insects crawling on food, characters from sci-fi films in his day to day life, and on one memorable occasion, a tiger walking down Belfast city centre street! For Elaine Orwin, it’s dark clouds falling from her kitchen ceiling. Sometimes she sees big, brightly coloured glitterballs and has done since she was a young child. But those visions are not real. They both have a condition called Charles Bonnet Syndrome which causes visual hallucinations in people who already have sight loss.

It’s under-reported and under-diagnosed across the UK and experts believe there are many people with it who have not yet sought help. As one patient put it, having symptoms but no diagnosis can be a frightening experience for people, some of whom wrongly “worry they have dementia”.

Read the full article here: https://www.bbc.co.uk/news/articles/cy8l15yd68zo

The Department for Education has published proposals for wide-ranging reforms to Special Educational Needs and Disabilities (SEND) provision in England, alongside the launch of a national consultation. The plans, which have been subject to much speculation over the last year, aim to create a more inclusive system, improve consistency across the country, and ensure earlier access to support.

RNIB is still analysing the proposals in full, and what they could mean for an estimated 35,000 children and young people with vision impairment in England. With a 12-week consultation period now open, there remains an opportunity to influence the details of these reforms so that the needs of children and young people with vision impairment are fully recognised and addressed.

RNIB supports the decision to retain the current system and entitlements, including Education, Health, and Care Plans (EHCPs), before moving gradually to the new approach from 2029. This should help avoid gaps or significant changes in day-to-day provision for individual children. RNIB also strongly endorses the commitment that no child attending a special school or college under the current system will move unless they choose to do so.

Craig Brown, Head of Education and Children Services at RNIB, said: “The reforms proposed in the Schools Whitepaper directly impact children and young people with vision impairments. We need the right tailored support for every child with vision impairment, whether that’s in mainstream schools or in specialist settings, with support plans that have legal status available to those who need them. There are an estimated 35,000 children and young people with vision impairment in England – it’s vital that their needs are explicitly addressed. We know that 70 percent of children with vision impairment are in mainstream education. It is crucial that local authority VI services are appropriately resourced, have the staff and money required to make sure specialist support is provided to all who need it in mainstream settings.”

Read the full response here: https://www.rnib.org.uk/news/uk-government-launches-send-reform-consultation-what-it-means-for-children-with-vision-impairment/ And https://www.rnib.org.uk/news/rnib-response-to-the-schools-white-paper/

Guide Dogs is calling for more volunteers to help support its life-changing work with people living with sight loss. And you can help spread the word, by requesting some posters and leaflets for your library! (When completing the form, please state whether you require a small number for one library, or if you are requesting on behalf of a few libraries.)

Request your pack here: https://forms.office.com/pages/responsepage.aspx?id=tc87y8kW0k-FGoIod0nFZE5BZYl7-sBBg84eLAhzuu1UM1BPTEU3MkExVDNNSDJKQ0UzTDQyOTBKRS4u&route=shorturl

Puppy raisers play a vital part in a guide dog’s journey, welcoming a young puppy into their home for the first 12-16 months and providing the basic training, socialisation and care it needs during its early development. Training dog fosterers provide invaluable support by welcoming guide dogs in training into their homes during evenings and weekends, while the dogs attend their specialist training during the day.

No previous experience is required, and with costs of food and vet bills covered, it’s an affordable way of having canine companionship.

Find out more about Guide Dogs’ volunteering opportunities and what’s available near you here: www.guidedogs.org.uk/volunteer

People with a rare eye condition that causes ‘frightening’ vision loss have told ITV News they believe it was caused by weight-loss medication, prompting experts to advise people to get their eyes checked before taking the drugs.

It comes as the UK medicines health regulator last month issued a safety warning after receiving three reports linking Semaglutide – known by brand names Ozempic, Wegovy and Rybelsus – to the incurable eye condition called NAION (Non-Arteritic Anterior Ischemic Optic Neuropathy). NAION is often referred to as an ‘eye stroke’ – it causes sudden, painless vision loss – usually in one eye, but sometimes in both eyes. The condition is thought to be caused by reduced blood flow to the optic nerve, and risk factors include sleep apnoea, high blood pressure and type two diabetes.

New research, released on 18th March and published in the British Journal for Opthalmology, shows that the weight-loss jab Wegovy may carry the highest risk of sudden sight loss compared to other Semaglutide drugs. Wegovy is approved on the NHS to help people lose weight in higher doses. Ozempic uses lower doses to treat type 2 diabetes, along with Rybelsus, which is a pill rather than a jab.

Read the full article here: https://www.itv.com/news/2026-03-11/patients-tell-itv-news-of-rare-sudden-blindness-linked-to-weight-loss-jabs

Many blind and partially sighted people were disproportionately affected by the pandemic and the UK’s response to it.

The Royal National Institute of Blind People (RNIB) has responded to the report from the third module of the official UK Covid Inquiry which provides limited details of how a repeat of such a situation could be avoided in any future pandemic.

RNIB gave evidence at this part of the Covid-19 inquiry in autumn 2024 on behalf of the Disability Charities Consortium (DCC). The DCC is a group of nine disability charities: the Business Disability Forum, Leonard Cheshire, Mencap, Mind, NAS, RNIB, RNID, Scope and Sense. Responding to the report, Mike Wordingham, RNIB’s Head of Policy, said: “The Inquiry has done half a job: highlighting failings in the pandemic response, but today’s report falls short of providing real answers as to why disabled people were more likely to die as a result of Covid-19. The evidence is stark. Rates of death for those with a vision impairment aged 30 to 69 years were 8.4 times higher than for those without any sensory impairment.”

Read the full article here: https://www.rnib.org.uk/news/rnib-says-lack-of-accessible-health-information-during-covid-pandemic-put-blind-and-partially-sighted-people-at-greater-risk/