Your Answers & Opinions Can Change Lives?
Our OOKP Support Service, believes every person’s experience has the power to make a difference. That’s why we invite you; patients, family members, carers, and supporters; to get involved in ongoing research and development, which aims to improve care, recovery, and quality of life for those affected by OOKP.
OOKP is one of the rarest and most complex eye surgeries in the world. Because so few people undergo this life-changing procedure, each story, challenge, and success provides insight that can help shape future support services, treatments, and emotional care. Your perspective is not only valuable; it’s essential.
By sharing your experiences, you could help researchers, hospitals, and charities, design better tools, improve recovery outcomes, and reduce the isolation many patients and families feel, both before and after surgery. Whether you’ve had the surgery, are preparing for it, or support someone who has, your journey could inspire and inform others just beginning theirs.
Taking part in research doesn’t mean being part of medical trials unless you want to. In most cases, it’s simply about being willing to share your lived experience, answer questions, test new ideas, or contribute your opinion on what matters most.
Depending on your interests, this could mean:
Taking part in informal surveys or interviews about your OOKP journey
Helping test or improve patient information guides, digital tools, or emotional support resources
Joining small discussion groups to share what helped you – and what didn’t
Being invited to contribute to NHS or academic research (with full support and clear explanations)
Giving feedback on services and helping shape national understanding of OOKP needs
Many of these opportunities can be done from home by email, phone, or video call. You'll always be in control of how much you want to share and what you want to take part in.
If you're a patient who has undergone OOKP surgery; recently or years ago; your experiences are invaluable. If you’re preparing for the procedure, your thoughts and concerns are equally important. Family members, carers, and even those who’ve chosen not to proceed with surgery are also welcome to take part. Every perspective helps us see the bigger picture.
You don’t need research experience or any specialist knowledge. We’ll support you at every step, and you can ask questions or decline to take part at any time.
Once you let us know you’re open to getting involved, we’ll contact you as research opportunities arise. We’ll always explain what’s involved, how long it might take, and how your input will be used. You’ll never be pressured to take part, and everything you share will be treated with respect and confidentiality.
Some opportunities may be led by our group, while others may come from trusted partners such as NHS hospitals, university researchers, or national charities. You’ll always be told who’s involved and how the project is being managed.
Getting involved in OOKP research can be incredibly rewarding. You’ll be helping to:
Improve care, recovery, and wellbeing for future patients
Reduce the emotional strain and confusion others might face
Influence how services are developed and funded
Contribute to national knowledge about OOKP
Be part of a community working for long-term change
Some people also find, reflecting on their journey and using it to help others brings a sense of purpose and healing. It’s a powerful way to give back.
If you’d like to find out more, just get in touch. You can contact us by email, phone, or through our "WhatsApp" group. Let us know you're interested in research and we’ll keep you updated as opportunities arise. There’s no commitment – just an open door.
Click the button below to register your interest.
Please include "RESEARCH" in the subject line or in the initial text if using "WhatsApp"
Being a new support service, with many members needing assistance, we rely on help, from volunteers, fundraisers,, telephone buddies and more.
If you fancy a challenge, with amazing rewards, click the button below and join us