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Resources and organisations

Find organisations, support groups, books, videos and other resources to help you cope.

Cancer Research UK information and support

Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.

We are committed to producing high quality information for people affected by cancer.  As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send us a question online.

Cancer Chat is our online forum where you can share experiences.

UK eye cancer organisations and sites

A UK charity for families and people affected by retinoblastoma. It offers support and information, funds research and raises public awareness of this rare cancer.

The Royal London Hospital
Whitechapel Road
London E1 1BB

Tel: 020 7377 5578 (Monday to Friday, 9am to 5pm)
Email: info@chect.org.uk

A UK support charity for people with ocular melanoma.

139 Langley Road
Slough
Berkshire
SL3 7DZ

Helpline: 0300 790 0512
Email: info@ocumeluk.org

Organisations for problems with eyesight

The British Computer Association for the Blind has information about a self help group of visually impaired computer professionals and users.

Calibre Recorded Books aim to make the pleasure of reading available to anyone who cannot read ordinary print books for whatever reason.

The Guide dogs website provides information about guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.

221 Bristol Avenue
Blackpool
FY2 0BF
England

Helpline: 01253 951131
Website: www.naes.nhs.uk
Email: info@naes.nhs.uk

The NHS Artificial Eye Service is part of the NHS. They supply and fit artificial eyes, as well as checking the artificial eyes for people who wear one. Their website includes information about how your artificial eye is fitted and caring for your eye afterwards. They also have a helpline.

The RNIB is the UK’s leading charity offering information, support and advice to people with sight problems. They have detailed information to help anyone with a sight problem. Services include Braille, Talking Book and computer training, and imaginative and practical solutions to everyday challenges. They also run a national library service providing books and information services for visually impaired people.

RNIB Newsagent

RNIB Newsagent has more than 200 national newspapers and magazines for visually impaired and disabled people. They offer subscribers a choice of formats including CD's, USB sticks and digital downloads through their website.

The Macular Disease Society is a self help society for people with eye conditions called Macular Disease. They are dedicated to providing information and practical support to help people with poor vision make the most of their remaining sight.

LOOK UK supports parents and carers of children with serious sight problems. It campaigns for better services for people with sight disabilty. 

Lost eye is an American website and discussion forum. It is a completely free, noncommercial website for the information and support of people who have recently lost an eye, or who may lose an eye due to surgery, injury or disease. You can get help, support and tips from people who have adjusted to losing an eye. As it is an American site some of the issues are not relevant to the UK.

Organisations giving help for facial changes

Changing Faces provide support and information for people who have any form of facial disfigurement including disfigurement caused by cancer. They also provide a skin camouflage service for people in England and Scotland. Trained volunteers teach people how to apply specialist cover creams.

Phone: 0300 0120 275 (support and advice line)
Head office email: info@changingfaces.org.uk

The contact details for the skin camouflage service are:

Phone: 0300 0120 276
Email: skincam@changingfaces.org.uk

This UK organisation for people with facial disfigurement offers: 

  • telephone support
  • a service to link up people in similar situations
  • dietary and medical advice
  • social activities
  • resources and a newsletter

Phone: 01843 491291
Email: chrisletsfaceit@aol.com

Saving Faces is funding education and research to improve medical treatment and support for people after facial surgery.

Sometimes it can be helpful to talk to someone who has been in a similar situation. Saving Faces can put you in touch with other people who have had facial surgery.

Enquiries Tel: 020 8223 8049

Helpline Email: helpline@savingfaces.co.uk

Helpline Tel: 07792 357972

Support organisations

Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.

Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form

The Rare Cancer Alliance offer support and information to people affected by rare cancers. It has a forum where you might be able to meet others with the same cancer as you. 

Reading list

Jay Adkisson
iUniverse, 2006
ISBN: 978-0595392643

Jay Adkisson compiled this collection of emails and message threads from LostEye.com's website, along with articles and other helpful information to help people who have lost an eye to cope with the experience. The message is that life can continue as normal after the loss of an eye. The book is American so some issues are not relevant in the UK.

From Macmillan Cancer Support

  • Understanding head and neck cancer
  • Diet and cancer
  • Coping with advanced cancer
  • Controlling cancer pain
  • Controlling symptoms of cancer
  • Lost for words - how to talk to someone with cancer
  • Sexuality and cancer
  • Understanding chemotherapy
  • Understanding radiotherapy
  • Coping with hair loss
  • Coping with fatigue
  • Understanding cancer research trials (clinical trials)
  • The emotional effects of cancer
  • Talking to children when an adult has cancer
  • Talking about your cancer

From the Royal Marsden Hospital Trust

  • Chemotherapy
  • Radiotherapy
  • Clinical trials
  • Your operations and anaesthetic
  • After treatment

These booklets can be downloaded from the Royal Marsden website, or you can request them by calling freephone 0800 783 7176, or send an email to patientcentre@rmh.nhs.uk.

If you would like to recommend a book

Please contact us if you would like to recommend a book that you have found helpful. It helps us if you include the title, author, publisher's name and year, and ISBN number.

Information and help