Your eye consultant, or ophthalmologist, is or will become a critically important person in your life. Bear in mind that retinitis pigmentosa is a progressive condition, and a rare one, so you will want to work with someone who really understands it well.
Currently you have the right to be referred by your GP to a hospital and consultant of your choice, though of course they will have to have the resources available to be able to see you. There are many good ophthalmologists and eye clinics across the country, but first and foremost you should be asking to be referred to a retinal specialist, and ideally someone who has a particular interest in inherited retinal dystrophy.
Other factors you will need to take into account when asking for a referral are:
- Geography and costs, as you will be travelling regularly to the clinic
- Trusted recommendations
- Do others in your family use a particular consultant?
- Sub-specialisms, for example some consultants are experts in a particular type of RP or patient
When you meet your consultant and go through the testing and diagnosis it is the start of an important relationship. You may be distressed or angry – some people are more accepting of the prospect of sight loss than others – and the way in which this initial discussion takes place and is handled will be crucial.
There is a suggested list of things to think about when going to see your consultant on the separate RP Fighting Blindness website.
You will need somebody to trust throughout your life with RP, and once you have had a chance to think about it in a considered way you should have no qualms at all about asking more questions, seeking another referral, or asking for a second opinion if you have any doubts or do not feel you are getting the information you need. Your trust, your eyesight, your welfare, are all more important than any consultant, no matter how highly qualified, and should be your highest priority.
Remember that your ophthalmologist will be responsible for your eye health in general, not just your RP. It is important therefore that you are NOT simply discharged after diagnosis, you should be visiting him or her every year. Other eye conditions do affect people with RP, and it is not unknown for these to go untreated and for sight to be lost unnecessarily as a result, for example due to cataracts or macular oedema. If you have been discharged, you can go back to your GP and ask to be re-referred.