Life on Pause: RNIB calls on Health Secretary to act as blind and partially sighted people wait over a year for vital assistance

Thousands of people with sight loss across England are finding their lives stuck on pause while they wait for vital support – in some cases for more than a year.

New research by The Royal National Institute of Blind People (RNIB), shows that vision rehabilitation support provided by local authorities including essential white-cane training, cooking and technology skills, has become an under-funded Cinderella social service across England, lost amongst the many pressures facing local authorities.

RNIB’s new Freedom of Information report shows 20 per cent of local authorities (17 authorities) had people waiting over a year to receive just an initial assessment of the services they need; 85 per cent of local authorities did not complete vision rehabilitation assessments within the RNIB-recommended 28 days and 38 local authorities told us assessments are not always conducted by qualified Vision Rehabilitation Specialists.

Vivienne Francis, RNIB’s Chief Strategy and Public Affairs Officer, said: “Without the right support, sight loss – which sometimes comes overnight – can leave people with huge challenges in living their lives. From travelling to work, to looking after families and homes, or simply pursuing a loved hobby. But it doesn’t have to put life on pause.

“People tell us they can become isolated at home and lose confidence – sometimes for years. Vision rehabilitation is crucial in stopping this spiral and pressing play on people’s lives. It supports blind and partially sighted people to thrive and regain independence, whether that be navigating public transport, cooking a meal, or returning to the workplace. It restores dignity, independence, and the ability to take part in everyday life. But under-resourced services are denying so many this chance. We can’t let this continue. As part of RNIB’s dedication to helping people gain the skills they need to feel independent in a new reality, we want Wes Streeting, Secretary of State for Health and Social Care, to commit to ensuring blind and partially sighted people get the emotional and practical support they need, when they need it most.”

In some parts of England, councils have been forced to slash staff so they now have just one qualified staff in place to deliver vision rehabilitation to thousands of people. In fact 24 per cent of local authorities have unfilled specialist roles, with 44 vacancies across 33 authorities, straining already overstretched teams. This has increased significantly from 32 vacancies across 31 authorities in 2023.

Alexis Horam who worked for 20 years as a Vision Rehabilitation Specialist in a London borough said: “Over the years the Sensory Team was slashed from 12 to just one person working with people with a vision impairment - me! I would literally lie awake at night thinking about how I was going to support people with sight loss across an entire London borough. I had a big caseload, was responsible for the waiting list and was the only person with specialist knowledge. In addition, there was no management with knowledge about vision impairment or regulation of the service and nowhere to go for specialist support in my work place. In the end I felt completely burnt out and had to resign from a job I loved in order to safeguard my own wellbeing. I just couldn’t deliver the support that I knew people desperately needed. Having worked with thousands of blind and partially sighted people I know how life-changing timely support can be.”

David Brookmyre aged 43 from Middlesborough, had to leave his successful job in IT and move back home with his parents. He has now been waiting for an initial assessment from his local authority for 18 months. He said: “I am just completely reliant on family at the moment. I can’t go out to the shops or cook meals or socialise independently without their support, I am largely at home trying to seek out various avenues of advice and support from other blind people and organisations. It’s been incredibly tough. To have to lose my independence and rely on my family after all these years has been really hard. I’m trying to look at ways to apply for suitable jobs with responsible employers and get back into work but it’s so challenging when you lack mobility rehabilitation to travel and be independent. It really limits your life options. I want to speak out as I don’t want other people to have to go through this situation.”

Sight loss doesn’t have to put life on pause. Now is the time to press play. We are urging everyone to join more than 25,000 people in signing RNIB’s petition calling for urgent action RNIB campaigns | #OutOfSight campaign petition.

Follow the ‘Life on Pause’ campaign across RNIB’s social media channels.

Effective vision rehabilitation is achieved by providing a package of services, including:

▪ mobility or white cane training

▪ emotional or peer support

▪ technology training to use phone accessibility features or screen reading software

▪ support to complete daily tasks, such

as cooking.

Each person is assessed on their individual needs and receives a tailored package of support to meet the desired outcomes.

RNIB’s four steps for change:

1. Commission the National Institute for Health and Care Excellence (NICE) to develop guidelines and quality standards for vision rehabilitation.
2. Subject vision rehabilitation services to the same regulation and monitoring as other adult social care services. This could be done within the current legislative framework and by extending the remit of the Care Quality Commission.
3. Recognise the skill and expertise of Vision Rehabilitation Specialists (and Qualified Habilitation Specialists) by making Vision Rehabilitation Specialists a regulated profession.
4. Encourage better integration of services, by strengthening the links between secondary and social care settings, with a guaranteed route into vision rehabilitation for everyone who needs it, while ensuring blind and partially sighted people are informed of their rights and the services they can expect to receive.

Main case studies available for interviews:

• Alexis Horam: A Vision Rehabilitation Specialist on lying awake at night feeling unable to provide support for an entire London borough of people with sight loss. Her team reduced from 12 to one, complete lack of regulation and support and huge caseloads. Reaching burnout and being forced to resign.
• David Brookmyre: A man in his 40s who has been forced to quit his successful IT job due to sight loss and move back home with his elderly parents. He is unable to go out without support and feels his life is completely stuck on hold. He has been waiting 18 months for support.
• Bhavini Makwana: An Asian mum with young children who had to carry on trying to bring up her kids when sight loss hit and faced shame and derision trying to do the school runs and from her own community. She felt unable to look after her home and family. When she eventually received vision rehabilitation after years of having fallen between the cracks she found it completely life changing.
• An RNIB spokesperson (with sight loss) to explain what vision rehab is and outline what needs to change

Notes to Editors

All media enquiries including interview requests to 0207 391 2223 or [email protected]. For urgent enquiries out-of-hours, please call 07968 482812.

About RNIB

We are the Royal National Institute of Blind People (RNIB).

Every six minutes, someone in the UK begins to lose their sight. RNIB is taking a stand against exclusion, inequality and isolation to create a world without barriers where people with sight loss can lead full lives. A different world where society values blind and partially sighted people not for the disabilities they’ve overcome, but for the people they are.

RNIB. See differently.

Call the RNIB Helpline on 0303 123 9999 or visit www.rnib.org.uk