How you can help the Ocular Oncology Department
By understanding your condition
An important way in which you can help us is to understand as much as you can about your condition, reading any material that is provided and feeling free to ask questions if necessary. We believe that patients who are well informed about their tumour tend to worry less about their condition and generally cope better than those who leave too much to their own imagination.
By giving us feedback
Feedback is very important and it would be very helpful if you could complete and return any questionnaires that you receive. There are two types of questionnaire. The first, dealing with patient satisfaction, will ask you questions about administrative matters, your experience in hospital and how you feel about the results of your treatment. The second type of questionnaire may be sent after discharge from the ocular oncology centre, to determine your general state of health and to enable us to become aware of any complications that might develop years after your treatment.
By complaining
If there is anything you are unhappy about, you are encouraged to make a complaint, which will help us rectify the problem.
By donating tissue and blood samples for research
It would be very helpful indeed if you could give us consent to use tissue and blood samples for research. In addition, we would like to use your clinical data for outcomes evaluation and photographs for teaching and research purposes. As mentioned previously, your anonymity and confidentiality will be protected. National and international regulations ensure that no harm whatsoever will come from using your data, images or tissues for research, teaching or audit.
By speaking to new patients about your own experience
You can do this either through the patient forums on this website or by joining our telephone database. If you agree to join our telephone database it is likely that you will be asked to speak to about one or two new patients each year. Depending on your preference, we can either give them your telephone number or we can telephone you with their number
By making a financial donation
Many patients have donated money to the Eye Tumour Research Fund, which provides valuable assistance to patients, by improving our knowledge of Ocular Oncology.
By attending our patient focus group meetings
About once a year, we hold a patient focus group meeting on a Thursday morning so that patients attending our follow-up clinic can speak about their experiences and make suggestions for improvements. Minutes of the meeting are discussed by members of our centre. We hope that in future these will be published on this website.
By joining our patient support group
This group would represent all our patients. Its main functions would be to:
- Discuss with us how various aspects of care might be improved;
- Assess any newsletters, guides, information sheets, or other literature we may have prepared, before large scale distribution to patients, to check that such material is interesting, relevant, correct, and easily understood;
- Discuss with us our various clinical and research activities, so as to ensure that everything we do is fully in accord with our patients' wishes and attitudes;
- Join us in our campaign for improved resources, when we negotiate with health authorities for more funds and better access to modern tests and treatments;
- Provide a voice for 'consumer-driven' progress.
We are currently investigating how best to form this patient support group.
