'For 12 years I felt like my life was over - thousands are still left in limbo like me'

A mum-of-two who felt “like my life was over” for 12 years as she slowly lost her sight is calling for an end to a postcode lottery for vital vision services. Bhavini Makwana, 45, was diagnosed with the rare condition retinitis pigmentosa in 1997 and received a certificate of vision impairment in 2002. But it was not until 2009 that she was finally offered vision rehabilitation, which supports people to live independently with sight loss.

The service, funded by local authorities, helps users make adaptations to their homes and learn techniques to help with cooking, cleaning, navigating journeys and white cane training. Bhavini, of Essex, said the service transformed her life but came far too late. She explained: “I wasn’t even aware of the support that was available. I was just diagnosed and told there was nothing they could do, there was no cure or treatment.

“They couldn’t tell me how long it would take for my sight to deteriorate because everyone is different — it could be years, months or even weeks.

“I just thought, that’s it. I’m going to be at home for the rest of my life with my parents.”

Research by The Royal National Institute of Blind People (RNIB) shows thousands like Bhavini are facing long waits for rehabilitation.

Freedom of Information requests sent to local authorities by the charity found 85% did not complete vision rehabilitation assessments within the RNIB’s recommended 28 days. One in five had people waiting over a year for an initial assessment.

After shutting herself away as a teenager and cancelling her application to study business law at university, Bhavini eventually married and had two children.

As her sight continued to deteriorate, she struggled with everyday tasks such as taking her eldest daughter to school.

She said: “On the journey back home, it was just me with my baby in a pushchair. A 10-minute journey used to sometimes take me 45 minutes because I just couldn’t find my own front door.”

Bhavini, who can now only see light and dark, was eventually offered vision rehabilitation after she moved to a different London borough.

A rehabilitation worker helped her make adjustments at home to be less reliant on her husband. These included using raised bumpon stickers to identify certain buttons on household appliances and putting a rubber band on her shampoo bottle.

Sticking a reflective strip on her doorstep and installing a sensor-activated light also helper her find her way home more easily. She also later completed white cane training.

Bhavini has since returned to work and is now a policy and campaigns manager for sight charity the Thomas Pocklington Trust.

She said the skills she learned provided “a massive lifeline”, adding: “I waited 12 years — 12 years of feeling like my life was over, feeling that I wouldn’t be able to do anything ever again.

“Now I know you can definitely continue education, employment, hobbies, social activities. There’s so much out there I wasn’t even aware of.”

The RNIB said vision rehabilitation has become an under-funded Cinderella service across England. It warned that a lack of support can leave people with sight loss isolated at home and lacking confidence.

Vivienne Francis, the charity’s chief strategy and public affairs officer, said: “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.

“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.”