Coping with sight loss
- Emotional support and counselling services
- Low vision clinic
- Additional support
- Further information and support
Being diagnosed with sight loss can be life-changing and often results in a range of emotions similar to experiencing a bereavement, from shock, denial, anger, frustration, anxiety, fear to sadness and helplessness. These are all common reactions to sight loss and it is important to know that it is OK to feel this way.
Everyone is different when going through this process. You may or may not experience all of the above emotions and some emotions may last longer than others, but these feelings should lessen with time as you learn to adjust to life with your remaining vision.
Initially, you may feel like you have lost your sense of identity but with the right kind of support (both emotional and practical), you may regain your confidence and continue with your previous roles or even discover new interests that you would not have otherwise considered.
Fortunately, there are a range of services available both in hospital and in the community to help you go through this difficult period. These are explained further in the following text. The type and level of support that everyone requires is variable but the most important thing to remember is not to be afraid to ask for help.
Emotional support and counselling services
You may feel emotionally vulnerable when newly diagnosed with sight loss or experiencing deteriorating vision. It is during this period that having a good support network makes a positive impact on how you adjust to this new phase of life. Talking to family and friends may be helpful, but some might prefer to talk to people with similar experiences or outside of their family circle.
This is where counselling services might help and they can be accessed through:
- Specialist eye hospitals or eye departments
- GP services
The support services offered by charities include one-to-one telephone counselling, online counselling via instant messaging, video or email and telephone support groups, family support services and peer support groups.
- Retina UK local peer support group
- Retina UK Talk and Support service
- Royal Society for Blind Children (RSBC) Family Support Service
- Royal National Institute of Blind People (RNIB) sight loss counselling team
- Royal National Institute of Blind People (RNIB)—Coming to terms with sight loss
Although it is normal to feel sad initially with sight loss, sometimes it may lead to depression if it lasts more than a few weeks and stops you from getting on with your daily life.
Please seek help from your GP or counsellor if you experience any of the following:
- Low mood
- Low energy
- Loss of interests in activities that you normally enjoy such as your hobby or meeting friends and family
- Disturbed sleep
- Loss of appetite
- Suicidal thoughts
These are some of the main symptoms associated with depression but other symptoms not listed here may be present as well.
Low vision clinic
Low vision clinics offer practical support to children and adults with uncorrectable vision loss to optimise their remaining vision and help maintain their independence. In the NHS, the majority of low vision clinics are hospital-based services led by optometrists, though other models exist within the charity sector, rehabilitation centres and community optometry practices.
Typically, patients are referred to low vision clinics by their ophthalmologist, but a GP can refer patients to this service as well. If you are struggling with your vision, you can ask your ophthalmologist, optometrist or GP to refer you to the low vision clinic.
When attending the clinic, you will undergo a low vision assessment which contains two main aspects:
- Measurement of vision and prescription of glasses and magnifiers to maximise vision
- Signposting and referral for additional support
These aspects can only be addressed if the clinician has a full understanding of how visual impairment affects your daily life. Though common complaints often centre around difficulty in reading, it is important to remember there are other aspects of life which can be affected by sight impairment such as:
- Mobility and independence
- Ability to look after others
- Accessing information and technology
- Developing and maintaining personal relationships
- Emotional wellbeing
The nature and extent of sight impairment and whether it is stationary or progressive, are likely to impact on the challenges you face. Exploring these factors will help identify the additional support you may need and allow for an individualised, goal driven approach to be taken.
Measurement and optimisation of vision
Vision is assessed using standard letter charts and reading tests. Spectacle prescription is determined to check whether vision can be improved with new glasses. A range of potentially suitable optical magnifiers are demonstrated, such as hand magnifiers, stand magnifiers, telescopes or strong magnifying reading glasses. These will be selected to target the specific tasks you expressed difficulty with. Suitable devices are typically loaned free of charge from the NHS.
Though the NHS does not usually provide electronic magnifiers, these will often be demonstrated. These include portable, desktop and head mounted electronic magnifying systems and text to speech devices.
Several expensive wearable electronic magnifiers are also available commercially.It is recommended that you discuss these with a low vision clinic optometrist before purchasing any in case your needs can be easily addressed by more simple devices.
Common devices such as computers, tablets and smartphones have a wide range of accessibility features available such as on-screen magnification, contrast enhancement, speech output and voice activation. If appropriate, information is normally provided to you on how to tailor the settings to your personal needs or the clinic can refer you to training providers.
More information on assistive technology for visual impairment is provided by the Royal National Institute of Blind People (RNIB).
Depending on your needs, you may be signposted or offered a referral to additional services or other healthcare professionals. These can be categorised as below:
Eye Clinic Liaison Officers (ECLOs)
ECLOs are based within eye departments supporting individuals with visual impairment or impeding sight loss and their families and/or carers. ECLOs provide practical and emotional support to help individuals understand their diagnosis, cope with the challenges sight loss presents and maintain their independence. ECLOs form a bridge between the eye clinic and social care and community services, ensuring those with sight loss can access the services and benefits they require.
ECLOs typically accept referrals from ophthalmologists and low vision clinics. You can ask to be referred to an ECLO if this is not offered initially but you feel that you need additional assistance due to your sight loss.
More information on ECLOs and what they do is provided by the Royal National Institute of Blind People (RNIB).