Focusing on sight loss Part 1

Daniel Williams

Founder of Visualise Training and Consultancy, U.K.

UK based Daniel Williams of Visualise Training and Consultancy shares a low vision patient’s perspective on how services and the patient experience can be improved.

What more can be done for Susan?

Susan, an active woman in her fifties, became worried when her vision started to deteriorate. After cutting her finger whilst preparing vegetables, falling when outside, scalding herself whilst making coffee and struggling to read print and text on her computer at work, she concluded that she needed help.

She made an appointment with her usual optometrist in the hope that her prescription needed changing, but during the examination, the optometrist noted macular changes (extensive dry AMD) and an OCT scan undertaken in practice identified an epi-retinal membrane that could be contributing to her distorted vision. During her sight test she informed the optometrist that she’d had a number of falls, was struggling to recognise faces, was feeling lonely and low in her mood and didn’t have any help at home. He referred her to an ophthalmologist.

After waiting for several weeks, she received a call from the hospital eye service saying they’d written to her regarding her appointment and she’d missed it which she was unaware of. Due to Susan’s vision level, she is unable to read small print and therefore missed her appointment slot. The hospital eye service rebooked her appointment while she was on the phone and one month later, she finally attended her appointment.

In many countries, equality laws state that providers have a duty to make reasonable adjustments to ensure a person with a disability isn’t put at a severe disadvantage. A reasonable adjustment in this situation would have been to provide letters in large print or call the patient to inform them of their appointment.

Her ophthalmologist diagnosed macular degeneration and she was asked to come back in three months’ time for further monitoring. Susan was devastated by the news and extremely emotional, she broke down in tears saying that she felt so alone and doesn’t have any help or support at home.

Unfortunately, she didn’t have access to advice or support, who could have provided emotional and practical support, information and referrals to services that can enable and empower people with sight loss. In most developed countries, there will be a sight loss charity, low vision service, and/or government rehabilitation service.

Susan went home following her appointment feeling devastated with her diagnosis and not knowing what to do next. She lives alone with no support network so continues to feel lonely, isolated and is struggling with everyday tasks such as cooking as she regularly burns herself and over pours her hot drinks. When she is out she regularly misjudges steps and kerbs causing her to fall.

She waited 2 weeks to be called by social services to assess her needs at which point she was placed on a waiting list to receive help from a rehabilitation worker. During the call, she was asked if she would be happy to be registered on the local authority database of people with sight loss.

In total, Susan waited over 6 months before she got the support she needed and, in this time, her confidence plummeted – she barely left the house, was afraid to cook, her mental health dipped and she began to suffer from anxiety. The rehabilitation worker helped her to regain her confidence with getting out and about safely, trained her how to use a white cane and to cross roads safely. They also gave her strategies and equipment for cooking and making hot drinks safely to avoid burning herself and referred her to social groups run by a local sight loss charity, where she could get peer support and talk to other people with sight loss. She now participates with her local sight loss charity attending social groups, tandem cycling and walking clubs. Susan is beginning to feel less isolated and is facing the future with new-found confidence.

It is the eye care professional’s responsibility to have a working knowledge of pathways to support services and an awareness of what local/national charities, government organisations and groups can offer locally.

In many ways, eye care professionals are at the front line, and as such, need to think holistically and make swift and intelligent referrals and engage with local sight loss provision to build relationships as we know sight loss is on the increase so we need to ensure patients don’t fall through the net. If you don’t refer patients for support, where will they go next?…

What’s important is that you establish links with these sight loss professionals and local organisations and are realistic about the amount of time you can dedicate to these referrals. It’s in everyone’s interest but most of all, to patients like Susan, to ensure there are as few barriers as possible to getting support that’s needed quickly.

If you do, people like Susan will find themselves enjoying support far more quickly, and their quality of life will be enhanced. To do this, the patient must be made aware of what provision is available, and what agencies can do to help. If Susan knew that support was available – such as liquid level indicators, high contrast kitchenware, mobility training, smart phone apps, special lighting and magnifiers – she could have had help sooner in her sight loss journey. In addition, the quicker someone like Susan receives support, the easier it is to rehabilitate someone in this situation.

If Susan knew that local sight loss charities, rehabilitation, low vision existed to provide advice, information, social clubs, support with technology, mobility, magnifiers, activities and resource centres, then she may not have felt so alone and could begin to move forward in her sight loss journey quicker.

Let’s look again at the initial situation and see how earlier intervention could have really helped.

Susan goes to her local optometrist because her eyesight is getting worse. She thinks that there is a chance that she may lose considerable vision.

Her optometrist makes her an appointment with an ophthalmologist but this time, takes a proactive approach and meets his duty of care to his patient. Referral for “confirmation of diagnosis” is not legally required in the UK prior to referral to outside agencies, so any service can and should be initiated because support and low vision services DO NOT HAVE TO WAIT for ophthalmology: A patient doesn’t have to be certified as sight impaired or severely sight impaired to receive a referral to a local sight loss charity or social services.

He does the following:

Refers Susan to social services for vision rehabilitation training.
Contacts a local sight loss charity who can offer practical advice and guidance ensuring Susan can access local services.
Refers for a low vision assessment to establish magnification solutions

This time, with the essential signposting taking place at the same time as the ophthalmologist’s referral, Susan gets support before social services respond. This approach is far more proactive and allows her to enjoy a degree of autonomy.

Read Part – 2

Author :-

I founded Visualise Training and Consultancy with help from The Prince’s Trust as having experienced gradual sight loss, I wanted to advance social change for disability rights by campaigning and advocating for inclusion, equality and diversity.

As a qualified eye clinic liaison officer and rehabilitation assistant and with the help of my guide dog Zodiac, I carry out workplace needs assessments and web accessibility audits throughout the UK to support employees with visual impairments. I also deliver training sessions that educate staff to better assist clients or customers with disabilities and have worked with over 700 organisations across all sectors. When employees are ‘Disability Confident’, inclusion becomes business as usual for everyone involved leading to increased job satisfaction and a more rewarding environment.

Currently I’m delivering ‘Seeing Beyond the Eyes’ CET workshops across the UK to foster closer links between the optical and sight loss sectors to benefit patients and improvements are happening daily.

In a voluntary capacity, I’m on the RNIB Working Age and Transitions steering groups which assess work related challenges blind and partially sighted people face. I’m also a Young Ambassador for the Prince’s Trust and sit on their Business Launch panels, helping other young people to start their own enterprises. I was recently appointed as a member of the College of Optometrists’ Public Patients Reference Group (PPRG) which gains input from patients and the public to their policies, guidance, and patient resources.

At the beginning, sight loss feels like the end but later you realise it’s just the start of seeing in a different way and having a new outlook on life. Overcoming my challenges has given me resilience, determination and the ambition needed to be successful.

If you’d like to know more about how your organisation can become more Disability Confident, feel free to email me at daniel@visualisetrainingandconsultancy.co.uk

Useful information

In the UK, Visualise Training and Consultancy has developed a resource pack for professionals to make it quick and easy for UK Optometrists and Dispensing Opticians to refer their patients for support.

To download your free copy, please visit

http://www.visualisetrainingandconsultancy.com/resource-pack-health-pros/

Perhaps you could develop a similar one in your country?

Visualise also provides an e-learning course to equip eyecare professionals with the knowledge and skills needed to empower low vision patients to access vital support and services.

Find out more at

https://visualisetrainingandconsultancy.com/training/cet-accredited-training/

Daniel Williams is the Founder of Visualise Training and Consultancy which works towards inclusion, accessibility and equality for all, providing CET eyecare professionals.

daniel@visualisetrainingandconsultancy.co.uk

https://www.visualisetrainingandconsultancy.com/