AMD: Help and Support

Your eyesight is very important, and discovering you have a condition that affects your vision can be upsetting and difficult to come to terms with. You may find it frustrating when simple everyday tasks become a lot trickier. 

The Royal National Institute of Blind People (RNIB) and Macular Disease Society can offer help and support. 

The RNIB can help whether you want to know more about your eye condition, join their library, find out about their low vision service or possible benefit entitlements, be put in touch with a trained counsellor or buy a product from their shop. They'll help you to find out what is available in your area and beyond, both from RNIB and other organisations.

The Macular Disease Society is a self-help society for people diagnosed with macular degeneration at any age with a membership of over 16,000.  As well as its helpline, discussion forum and local support groups where you can meet other people and share experiences, it provides information and counselling support. It also arranges conferences and funds research projects at UK hospitals.

Expert advice and support from your local council

If your sight loss is making some day-to-day tasks difficult or you would like to know how to make the best use of your remaining sight, you can be referred to the sensory impairment team working in your local authority.

Staff with expertise in sight and hearing difficulties can make a difference by providing helpful advice and support and show how low vision aids and equipment and gadgets can make tasks easier. They can also refer you to colleagues who can arrange to assess what practical help you may be eligible to receive.

To speed up the referral process, there is a form that eye clinic staff can complete on your behalf and with your consent, to notify Social Services that you are having difficulties due to your sight loss.

Financial support

If you have difficulties with personal care and day-to-day tasks or need watching over to make sure you are all right, you may be eligible to claim a non-means- tested benefit – Disability Living Allowance if you are under 65 or Attendance Allowance if you are 65 and over. You can find out more about these and other benefits you may be entitled to claim by calling Age UK. 

Driving

You may like to discuss this with your GP or ophthalmologist first but you need to inform the DVLA and your insurance company, if you drive and are diagnosed with macular degeneration.
 
If your sight is only minimally affected, it may still be safe for you to drive but you may be asked to perform a series of sight tests to prove this. Central vision is very important for driving, and if you do not meet the standards as set out by the DVLA, you will not be able to drive.

Further information

DirectGov
Website: www.direct.gov.uk
This website has useful information under the headings ‘money, tax and benefits’; travel and transport’ and caring for someone’.

Macular Disease Society
Website: http://www.maculardisease.org/

Helpline: 0845 241 2041
The Macular Disease Society is a UK charity dedicated to helping people with macular degeneration.

Royal National Institute of Blind People (RNIB)
Website: rnib.org.uk
Helpline: 0303 123 9999
Email: helpline@rnib.org.uk
The RNIB is a UK charity offering support and information to blind and partially sighted people.

NHS Choices
Website: www.nhs.uk
 Macular degeneration can be found in the Health A-Z section. The pages and contains information about diagnosis, treatment and includes an interview with someone explaining how their life has been affected by AMD.

NICE Technical appraisal TA155 Macular degeneration (age-related) – ranibizumab (lucentis) and pegaptanib (macugen)
Website: http://www.nice.org.uk/Guidance/TA155
Look for a patient version of any Guidance document. You can find it under the heading – NICE guidance written for patients and carers

Thomas Pocklington Trust  
Website: http://www.pocklington-trust.org.uk/
Tel: 020 8995 0880
The Trust is a leading UK provider of housing, care and support services for people with sight loss. They also fund research and development on sight-loss issues and publish reports and guidance on their findings.