Table 2 Examples of helpful communication for functional visual loss and things to avoid– adapted from [26].
Communication issue | Example | Things to avoid |
|---|---|---|
Naming the problem | ‘You have functional visual loss – this is a common issue and I’m going to explain to you what it is’ | ‘You don’t have x, y, z’; ‘There’s nothing actually wrong with the eye or brain’ |
General explanations of functional visual loss | ‘This is a problem related to abnormal functioning of the brain. Your eyes are sending visual signals to the brain, but the brain is not letting you experience them’ | ‘It’s non-organic’ |
Use of metaphor | ‘It’s a bit like a software problem on a computer rather than a hardware problem’; ‘Nothings damaged – it’s just not working properly’ | Comparison to everyday physical symptoms like blushing often unhelpful |
Use diagnostic tests to explain a ‘rule in’ diagnosis | ‘You have functional visual loss because I found evidence of it on the tests – let me explain.’ See all the examples in Table 1 | ‘All the tests are normal so that’s good, isn’t it?’ |
Overcoming dualism | Patient: ‘So, are you saying it’s psychological?’ Healthcare professional: ‘Functional visual loss is a condition that shows that the mind and the brain are one and the same thing.’ | ‘It’s a psychological problem’. Psychological factors are risk factors rather than causes |
Talking about mechanism before aetiology and introducing hope. | ‘The tests we have discussed show that you have the potential for experiencing better vision, but we need to find a way of retraining your brain so that this can happen’ | Not talking about mechanism! |
Discussing physical and mental health risk factors | ‘The fact that you have diabetic retinopathy, have bad migraine that affects your vision and the mental health problems you described are all likely to be relevant to why this has happened’ | ‘We need to figure out what your psychological trauma has been so we can treat you’ |
Talking about photophobia | ‘People with functional visual loss often have light sensitivity. We think it’s your brain trying to shut down visual input when its feeling overwhelmed’ | ‘You must take those dark glasses off – they are just making the problem worse’ |
Providing information | Copy your letter to the patient. Signpost to resources on functional visual loss and FND – eg neurosymptoms.org, fndhope.org | |
Prognosis | ‘This is not an easy problem to put right, but it does have the potential to improve, and many people do make a good recovery.’ | ‘Because there’s nothing wrong then it should just get better’ |
Orthoptic treatment | ‘My orthoptic colleague can spend longer explaining things and going through the tests with you. They may be able to start using the tests to help glimpse better vision’ | |
Psychological referral | ‘Psychology/Psychiatry can sometimes help people with functional visual symptoms to look for risk factors such as anxiety or depression that could be making the brain problems worse. What do you think?’ | ‘This is a mental health problem; I’m sending you to psychiatry’ |
Talking about hypnotherapy | ‘Hypnotherapy has a strong scientific basis. It can be a way of putting the brain in an altered state that might allow you to have better vision. You can be taught self-hypnosis that might help’ | ‘You could explore complementary therapies like hypnosis’ |
