Lucy, an active woman in her late sixties living in England, became worried when her vision started to deteriorate. After cutting her finger while preparing vegetables, falling when outside, scalding herself while making coffee and struggling to read print or watch television, she concluded that she needed help.
Referral
She made an appointment with her usual optometrist in the hope that her prescription needed changing. During the examination the optometrist noted macular changes and an OCT scan undertaken in practice identified an epi-retinal membrane that could be contributing to her distorted vision (see figure 1). 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 did not 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.
Figure 1: Epiretinal membrane or cellophane maculopathy seen via scanning laser ophthalmoscopy during an OCT assessment
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 the BD8 in England and Wales – figure 2) was completed and sent to Lucy’s local social services department. She waited two 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.
Figure 2: Template for a Referral of Vision Impairment (RVI)
Delay
In total, Lucy waited over a year before she got the support and help she needed. During 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, developing 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 old established single-track pathway that is GP referral.
Appropriate pathways
In many ways, Optician readers 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, see figure 2), a template of which is free to download.1 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 email address to enable referrals on line.
What is 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 in everyone’s interest, but most of all Lucy’s, to ensure there are as few barriers as possible to getting the support 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 (see later for examples), 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 what 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.
Early intervention
Let us 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, and is very worried, 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 a duty of care towards 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.
The optometrist does the following:
- Refers Lucy to social services for vision rehabilitation training.
- 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 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.2
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 limited resources or perceived 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.3
Figure 3: Liquid Level Indicator
Further help
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. Here is a brief list of some sources of help that may be useful for Lucy.
- Liquid Level Indicator so that Lucy can tell if her cup is full or not (figure 3).
- High contrast plates and chopping boards to make it easy to see her food (figure 4).
- Penfriend Labeller (from the RNIB) is a small gadget for labelling tins of food or clothing which speaks out the content or label you give it (figure 5).
- Task lamps offer a great improvement to everyday tasks.
- Automatic chopper so that Lucy can prepare food more safely.
- Bump-ons are useful stickers for Lucy so she can tell if the cooker is on or off by feeling the notches.
Figure 4: High contrast chopping board
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.4
Figure 5: Penfriend Labeller
There is no doubt that human support is often the most vital element of a care package. Rehabilitation, mobility, and the learning of skills are 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 than a pair of glasses: they take hope and knowledge.
Daniel Williams is founder of Visualise Training and Consultancy
- 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. To download your free copy, please visit: http://www.visualisetrainingandconsultancy.com/resource-pack-health-pros.
- 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 https://www.eventbrite.co.uk/o/visualise-training-and-consultancy-and-orbita-black-7994577028.
References
1 https://www.gov.uk/government/publications/guidanc...
2 www.adass.org.uk/media/5157/adass_position_stateme...