The need to see beyond the eyes
Daniel Williams (UK) shares his experience and a low vision patient’s perspective on what more can be done to improve services.
What more can be done for Katie?
Katie, 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 Katie’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. Katie 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 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 countries there will be a sight loss charity, low vision service and/or government rehabilitation service.
Katie 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 and about she regularly misjudges steps and kerbs causing her to fall.
She waited two 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, Katie 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. Katie 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 really important is that you establish links with these sight loss professionals and local organisations and are realistic about the amount of time you are able to dedicate to these referrals. It’s in everyone’s interest but most of all, to patients like Katie, to ensure there are as few barriers as possible to getting support that’s needed quickly.
If you do, people like Katie 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 Katie 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 Katie receives support, the easier it is to rehabilitate someone in this situation.
If Katie 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.
Katie 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 Katie to social services for vision rehabilitation training.
Gets in touch with a local sight loss charity who can offer practical advice and guidance ensuring Katie can access local services.
Refers for a low vision assessment to establish magnification solutions.
This time, with the essential signposting being done at the same time as the ophthalmologist’s referral, Katie gets support before social services respond. This approach is far more proactive and allows her to enjoy a degree of autonomy.
To better illustrate the above points, let’s look at case studies:
A man is diagnosed with a condition that is resulting in a gradual loss of eyesight. As someone who has worked in a busy office environment for more than twenty-years, he experiences anxiety and feels a mounting sense of hopelessness, asserting that he may not be able to do his job. The optometrist refers him to a national charity for talking support, and financial support for work related expenses. A few weeks later, the patient has started a course of counselling, and the work financing scheme has assessed his needs within his workplace and, along with his employer, has installed screen magnification and screen reading software to allow him to continue his job. If these referrals had not have taken place, the patient may have suffered emotionally, left his job unnecessarily
A patient has very little vision left. A keen sportsman and former soldier, he finds his mental health dipping, experiencing a sense of loss and motivation. The optometrist refers him to a specialist who can better deal with his symptoms. But this is only part of the story; the optometrist realises that sport and exercise promote a positive mental state, so he refers the patient to charities that work with former military personnel and sports people. He then gets the opportunity to exercise and socialise and along with the clinical and surgical intervention, he soon begins to feel more positive. Six months down the line, he feels able to participate in mainstream sport and has a social life, things that most people take for granted, but are vitally important.
These two snapshots give you an idea of the power of referrals and the importance of slightly lateral thinking. However, I am acutely aware that consultations have time limitations and practices have limited resources and constraints. These factors should not get in the way of your moral and ethical duty of care you have for your patients. It is therefore important to consider giving certain patients more consultation time in order to explore choices. It can be argued that equality laws would support a patient’s right to having a little more time with you. This said, the process takes time, so in some cases delegation would be wise and sensible. The optical technician, optical assistant, dispensing optician or receptionist could help make sure your patient has the information in a format he or she can access, and fully understand what support is available.
If a non-medical referral doesn’t take place, a patient may find him/herself in a hospital where an eye clinic support worker is in place. If this is the case, the patient’s needs may be better understood.
So, if we were to design a utopian world, what would it look like?
Let’s take two scenarios:
A totally blind person has a routine examination in order to measure eye pressure. The check complete, instead of shaking hands and saying goodbye after 10 minutes, the consultant or optometrist asks how he is feeling. The patient has an opportunity to be honest – maybe they say that they are feeling low or depressed. Maybe they allude to the fact that they don’t have a social life. The doctor or optometrist can make a number of referrals to local and national organisations in order to address the issues. This proactive approach means that the patient will have the opportunity to get proper and meaningful help, so his quality of life can be improved.
A partially sighted woman is in your examination room. As she has useful eyesight and has exhibited a number of worries and concerns, you give her a little more time. Your conversation reveals anxiety relating to a number of daily tasks. You offer her a full explanation and demonstration of how to correctly administer eye drops, an outline of the services she may be able to access and verbally give her some advice. You provide her with literature in electronic format; snappily written, easy to read notes. As there are a number of agencies who can support her, you delegate, and a colleague makes the referrals. You encourage her to make an appointment to look at low vision aids, and in a few weeks she is empowered by a mixture of technology, optics and knowledge.
Sometimes eyesight cannot be saved. Some people may lose some, a lot or all their eyesight. Whilst life will inevitably become more challenging, in some cases much more difficult because of a number of factors that I won’t go into here, there is no reason why a full and meaningful life cannot be enjoyed. As a medical professional it is your instinct to preserve and save, to do what you can, to employ drugs or surgery to mend somebody’s eyes. When you can’t do that, you may feel you have failed, you may feel disappointed or even sad. You may even feel a complex cocktail of emotions. Your training and experience may lead you towards a sense of negativity, and you may analyse the case, internalise it and even question yourself. But, in reality, there is far more you can do than save eyesight as you have the ability to change someone’s life in a real and meaningful way. You can help change, mend, and save someone’s life by thinking away from medicine and optics, and towards the person as a whole. Sometimes small things change lives; the opportunity to talk to someone who truly empathises and understands, the ability to read, be it in large print, audio or Braille. The chance to make a cup of tea safely, or to do the washing without fear of mixing colours. The chance to train again, to compete again, to act again, to feel like a fully functioning, important member of the family and society. Referrals can help these things happen. If everyone does their job, referrals can truly change lives.
Rehabilitation, mobility, and the learning of skills is vital and with a little knowledge, you can make sure that when a patient leaves your consulting room or practice, they take more with them then a pair of glasses, they take hope and knowledge.
- Patients with sight loss need to receive communications in their preferred format to ensure they can access them. Options include letters in large print, emails, Braille, audio, texts and phone calls
- Referrals to support services need to be made at the point of diagnosis to ensure patients can access emotional and practical support immediately. In most countries there will be a sight loss charity, low vision service and/or government rehabilitation service
- 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 in their area
- Essential signposting to support services can be done at the same time as a referral to the ophthalmologist. A good example of this would be to refer to social services for vision rehabilitation training, contact a local sight loss charity who can offer practical advice and guidance and refer for a low vision assessment to establish magnification solutions
- Consultations have time limitations and practices have constraints but these factors should not get in the way of the moral and ethical duty of patient care. Consider giving certain patients more consultation time in order to explore choices - it can be argued that equality laws would support this
- In some cases, delegation would be wise - the optical technician, optical assistant, dispensing optician or receptionist could help make sure patients have the information in a format he or she can access, and fully understand what support is available