does anyone have experience of setting up a glaucoma support group with their hospital, or in their locality. I’m giving *feedback* to the hospital after my last awful visit and I’d like to offer to help them give people a better experience of using their service. I’d appreciate any suggestions.
Thank you.
K
TBH I think that some of the giving feedback should come direct from Glaucoma UK. There is a real need for a patient voice especially because it feels difficult to do this if you are the person undergoing treatment. I think there should be some citizen science gathering information project ..which would help point out if there were problems with a particular hospital. For example where the communication process for virtual appts is 'no news is good news' ...until your letter is either lost in the post but more likely sent to someone else. If you are lucky then your hospital will have an ECLO who is there to help patients - most typically those with sight loss - but whose brief almost certainly does include outpatients - they could be a good starting point. I think if you have had a truly terrible experience then you should not dismiss the possibility of a formal complaint and to take that beyond the hospital's own service. I personally think when hospitals are inspected then inspectors should review complaints particularly those that find against the hospital.
Thank you for your thoughts. My feedback will go through the formal complaints channel. But I don’t want to come off as totally negative and they cannot improve their offer without input from patients. Also my experience with complsints is that the organisation tends to focus blame on the healthcare worker directly, without considering the systemic changes needed, which is not only unhelpful all round, it’s a missed opportunity to improve.
Great idea and much needed, been thinking about this myself too, ophthalmology can be notorious for poor communication and patient experience which is scandalous considering the types of issues some are dealing with
agreed. They have not learned from the experience of other hospital departments that have developed good patient-centred care. Could be so much better. It’s interesting that during the pandemic the focus was on trying to clear the backlog of cataract cases, so many more clinics available now. Yes it’s a quick win to restore sight to many who are struggling, but also £££s to docs working privately 😕.
Primary open angle glaucoma: Depth Perception
Trabeculectomy post op care
Confused about reliability of visual fields tests results
Surgery option (trabectome vs trabeculectomy)
