What more can be done for Lucy?
Refract - React - Refer
Lucy, an active woman in her late sixties living in England, 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 or watch television, she concluded that she needed help.
She made an appointment with her usual optometrist in the hope that her prescription needed changing. 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. He referred her to an ophthalmologist.
After waiting for three months, Lucy received her appointment. Her ophthalmologist diagnosed macular degeneration and she was asked to come back in three months’ time for further monitoring. Unfortunately, she didn’t meet an eye clinic liaison officer (ECLO) who could have provided emotional and practical support, information and referrals to services that can enable and empower people with sight loss. ECLOs are usually based within eye clinics, however not every area currently has coverage.
Lucy’s retinal specialist advised against surgery but explained that due to her sight loss, she would be eligible to be certified as sight impaired . A Certificate of Vision Impairment – CVI (formerly BD8) - was completed and sent to Lucy’s local social services department. She waited 2 weeks to be called by the local social services contact centre to assess her needs at which point she was placed on a waiting list. After a further three months, a Vision Rehabilitation Worker eventually contacted Lucy in order to carry out a home visit and assessment of her needs.
In total, Lucy waited over a year before she got the support and help she needed. In this time, her confidence plummeted – she barely left the house and was afraid to cook. Lucy’s mental health dipped, and she began to suffer from anxiety. The rehabilitation worker helped Lucy to regain her confidence with getting out and about safely, trained her how to use a white cane and cross roads safely. They worked with Lucy giving her strategies for cooking and making hot drinks safely to avoid burning herself and referred her to social groups where she could get peer support and talk to other people with sight loss.
It is the eye care professional's responsibility to have a working knowledge of pathways to support services and an awareness of what local charities, organisations and groups can offer.
With social services under pressure and under-resourced, the role of the optometrist and optician has become even more important, in fact essential for a person with sight loss. However, the referring optometrist or dispensing optician must move away from the single-track pathway that is GP referral. [NJR]
In many ways, you are at the front line of eye care, and as such, need to think holistically and make swift and intelligent referrals.
Some areas may have updated the Low Vision Leaflet (LVL) which enables a patient to contact social services directly. In England you might wish to complete a Referral of Vision Impairment (RVI) or another option might be to copy your referral letter to your local society / ECLO or vision impairment team in social services.
If you have an NHS.Net account your local access team may be able to provide you with a secure e-mail address to enable referrals on line.
What’s really important is that you establish links with these professionals and local organisations and that you are realistic about the amount of time you are able to dedicate to these referrals. It is everyone’s interest but most of all Lucy’s to ensure there are as few barriers as possible to getting support that’s needed.
If you do, people like Lucy 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 Lucy 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 contact with social services earlier in her sight loss journey.
It is important to know that referrals to outside agencies can be made prior to a Certificate of Vision Impairment being issued. If a patient is struggling with day to day tasks and needs support they should be referred to appropriate organisations for support no matter their visual acuity. Every area has a social services department and most have a local sight loss charity that can help.
You can refer to both local and national charities and organisations to get support for your patients.
Let’s look again at the initial situation and see how earlier intervention could have really helped.
Lucy goes to her local optometrist because her eye sight 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 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:
He does the following:
1. Refers Lucy to social services for vision rehabilitation training.
2. Gets in touch with a local sight loss charity who can offer practical advice and guidance.
This time, with the essential signposting being done at the same time as the ophthalmologist’s referral, Lucy gets support before social services respond. This approach is far more proactive and allows her to enjoy a degree of autonomy.
National Eligibility Regulations
In an increasingly challenging financial climate, Councils are allowed to consider their resources before determining if an individual qualifies for care and support provided by the council. They work to standardised eligibility criteria which may mean that they do not have to provide someone with a service if their needs do not meet the criteria. Councils do have a legal duty to assess an individual with presenting needs though even if the council is unlikely to be obliged to fund a care package. The council must also consider whether the individual would benefit from a period of “reablement” or in the case of someone with sight loss “vision rehabilitation”. This type of service is not subjected to the same eligibility criteria. According to a position statement published in December 2013 by the Association of Directors of Adult Social Services in England, vision rehabilitation should precede any assessment of long-term need.
Sadly, there is no guarantee that once referred to the local authority for help, a person will eventually receive a comprehensive package of support provided by the council, but the council should consider their current and future needs before reaching a decision. When local authorities opt out of their responsibility because of resources or perceive lack of need, other organisations must step into the breach and provide support.
Chapter 22 of the Statutory Guidance accompanying the Care Act (2014) contains specific information about local authority duties in relation to someone with significant sight loss. https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance (click on “other areas” from the contents list on the left-hand side)
With technology moving so quickly, there is no need for patients to struggle for so long. Even without referrals, with a little knowledge of technology, simple advice about smart phone applications or affordable hardware, can be given. Below is a brief list of such technology.
Some examples that may help Lucy ...
Liquid Level Indicator so that Lucy can tell if her cup is full or not .
High contrast plates and chopping boards to make it easy to see her food .
Pen friend Labeller is a small gadget to label tins of food or clothing which speak out the content or label you give it.
Task lamp can make a great improvement to everyday tasks.
Automatic Chopper so that Lucy can prepare food more safely
Bumpons are useful stickers for Lucy so she can tell if the cooker is on or off by feeling the notches.
Henshaws is a local society in the North West of England but they have produced a series of short “life-hack” videos which set out simple hints and tips that people with sight loss can try to make their lives a little easier. https://www.henshaws.org.uk/henshaws-life-hacks-2/
There is no doubt that human support is often the most vital element of a care package.
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.
Visualise Training and Consultancy has developed a resource pack for professionals to make it quick and easy for Optometrists and Dispensing Opticians to refer their patients for support. Here’s what Kathryn Batchelor-Dove & Michelle Dove of Dove & Conway Opticians in Bicester had to say about it…
We want our practice to be a relaxed friendly environment, with time for people to talk, whether to simply chat or ask as many questions as they want without feeling pressured. Since taking that time with them, it became obvious that patients were not aware of resources, helplines or technology that could help.
We had been trying to pull together information sheets for people, but even as eye care professionals, we had been struggling to make sense of the different roles and had thought that we might complicate things if someone is already within the hospital service for low vision.
The talk and resource pack have helped us get much clearer about the difference we can make by referring for social and charity-based help at the same time as to the medical services. The pack is clear, detailed, and gives us a much better idea of what type of help is available. Now we feel we can make a real difference, by being a first point of contact for many people.
We’ve already used the pack to raise awareness with local GPs, to pass on advice and access to counselling services and charities to patients and family members. It gave us the confidence to help a lady with very poor VA and reduced field, who had not been registered with low vision or have any idea of the benefits. Though in the past we would have had a chat about registration, we might have assumed there was a reason that she had not been registered, and not wanted to interfere in her care or complicate matters.
The talk helped us to realise it was possible this aspect had been overlooked, since she and her relative had no idea about registration at all. It was the matter of a few lines to ask the question of her Ophthalmologist, and to pull together some contact details for charities and services that could help. She understood that it might not mean she would be registered, but even if she wasn’t, the pack meant that I was able to pass on details of other people who could help her.
We are grateful for the pack and the training, it gives us the confidence that we are not complicating matters by potentially giving them old or out of date information.
To download your free copy, please visit here
The Visualise Seeing Beyond the Eyes CET roadshow supported by Thomas Pocklington Trust brings the optical and sight loss together for the benefit of patients and has trained over 1,000 people since its launch in May 2018. Workshops are ongoing so book your free place with this link
This Clinical Briefing has been provided along with a number of others by Visualise.
See more here