“Patients may be overwhelmed at the news of sight loss, especially if the diagnosis has come without warning”

Helping patients to feel in control

As an eye health information officer at the Royal National Institute of Blind People (RNIB), my role involves giving people information about eye health and eye conditions, taking the time to answer someone’s eye health questions in clear and simple language by phone or email.

The RNIB Eye Health Information team is part of a national telephone sight loss advice service. Most of our work is over the telephone, speaking to newly diagnosed people about their eye conditions. This may be anything from dry eye to age-related macular degeneration to much rarer conditions. If we don’t have information on a particular condition or treatment, then we can spend time researching individual enquiries.

Optometrists are well placed within the community where patients can have a point of contact for further information or questions about what they have been told about their diagnosis

Our aim is to provide information that will hopefully enable people to feel more in control of what is happening to them at the difficult stage of diagnosis or when sight has been affected. We also offer support on coming to terms with sight loss and the important services available if someone does lose vision. Many of our callers tell us that after talking to us they have higher levels of confidence in dealing with the medical aspects of their eye condition.

Many of our conversations give people a chance to explore and understand the information that has been offered to them by their medical team. We often talk with people about what they have been told about their eye condition or treatment and what this might mean. Listening and reflecting back the information people have been offered by their medical team can help people understand their situation better or help them make a decision on their treatments. Obviously, we can’t diagnose or be prescriptive with what people should or shouldn’t do, but we can offer the general information people can use to help make their decisions. Often, we encourage people to have more discussion with their medical team and help them form questions for when they speak with their ophthalmologist.

The team doesn’t only speak to individuals with eye conditions; they also talk to their friends and families too, helping them to understand how they can support loved ones going through practical and emotional challenges of sight loss. Medical, social care and some education professionals also use the service to find out information about eye conditions and treatments and to ask questions which they may not know the answer to.

It can be a difficult balance between scaring the patient but also getting them to take it seriously. Communicating this in a calm way can help avoid panic

Finding the right balance

Optometrists are often the professionals who first spot something that may be a concern. When this is flagged to the patient, it may be the first time the patient is aware of a possible problem. Although the optometrist may not give a formal diagnosis, they do need to be able to explain that there is a potential concern that needs addressing. It can be a difficult balance between scaring the patient but also getting them to take it seriously. Communicating this in a calm way can help avoid panic, but it’s also important not to downplay the seriousness of any action you wish for them to take, such as seeing their GP, attending eye casualty or complying with their glaucoma eye drops.

Although optometrists may not be the ones directly giving the diagnosis and prognosis, patients may often come to them for routine eye tests following a diagnosis at the eye clinic. Some people may not have taken in the news properly and often when people hear bad news, they only take in a certain percentage of it. Sometimes they don’t even realise it is bad news. Optometrists are well placed within the community where patients can have a point of contact for further information or questions about what they have been told about their diagnosis. They can take time to explain and back up what they have understood about their eye condition and any future treatments. This can help patients come to terms with what is happening.

It’s important that optometrists allow themselves and the patient time when discussing news of a diagnosis that may cause or has caused sight loss. The patient may be overwhelmed at the news, especially if the diagnosis has come without warning. Allowing extra time to have this conversation is important so that the patient doesn’t feel rushed and has time to absorb what you are saying, as well as giving them time to ask any questions. A lot of patients will often go home and, after reflecting, will have more questions. Inviting patients to come back and speak to you if they need to ask further questions can let them know that you are there for them.

It’s also helpful for optometrists to be aware of local support available for someone facing sight loss. For example, having a list in the consulting room of local sight loss societies, local support groups as well as national organisations, such as RNIB, can mean you are able to signpost people to support early. The Sightline Directory is also a useful tool for searching for local sight loss support services.

A key contact to be aware of locally is the eye clinic liaison officer (ECLO) at the local eye hospital. ECLOs offer practical and emotional support to people diagnosed or living with an eye condition or sight loss, as well as their families and carers. Based in the eye clinic, ECLOs can be at hand at every step of a patient’s sight loss journey from diagnosis to treatment to living with sight loss, giving information on practical aspects such as maintaining independence, financial benefits, education, employment.

While it’s natural for patients to feel depressed, if optometrists feel that the patient is really struggling, they should advise or discuss referral to their GP to consider counselling or other therapies which may help

It’s important that patients are put in touch with or made aware of support as early as possible. Some people may not be ready to access support, and this may take some time, but just letting patients know that the support is available (whenever they wish to access it) can help them feel that they are not alone.

It’s common for patients to experience a wide range of emotions when diagnosed with a condition that can cause sight loss. It’s perfectly natural for them to feel upset, angry and overwhelmed and they may be worried about how they are going to cope now and in the future. It’s important to convey to the patient that these feelings are normal; they shouldn’t feel guilty or apologise. While it’s natural for patients to feel depressed, if optometrists feel that the patient is really struggling, they should advise or discuss referral to their GP to consider counselling or other therapies which may help.

 

Poonam Patel is an eye health information officer at RNIB and an optometrist.