We are pleased to see this forum being used and there have been some important discussions which we have read and followed with interest. We will be presenting about this forum at an upcoming European urology meeting.
We would be interested to hear any feedback and suggestions for this forum.
Thanks.
Kay and Matt
Hi
The forum is great for reading and sharing ideas. It’s nice to know that people are staying stone free for longer and gives you a sense of community even thought you don’t know the other people, you have the same health struggle. It’s good to know you have somewhere to ask questions. I glad it’s up and running. Well done guys xx
Hi
This forum is very useful but it is not known about at Southmead Hospital so please make it known to more Consultants. I did tell mine about it but would be better being advised by you too. May be a poster or leaflet in the urology outpatient area.
Like you give out a card at Guys if you have cystinuria with details of who to contact for guidance/treatment. I would like to see this available to every patient with cystinuria no matter what hospital they are under. I have dealt with rural hospitals and they have very little knowledge about cystinuria to the point where no one saw me for 10 years as they told me I was managing very well on my own. I did question this at the time as wasn’t happy about it.
There is a reluctance of rural hospitals to send people to a specialist hospital who have a lot more knowledge and I think a lot of cystinuria patients aren’t having the best care available to them.
I am extremely happy with Southmead Hospital and they would welcome more cystinuria patients.
I heard from one of my Consultants on my last visit that it has recently been discovered that some people produce more stones a lot more quickly than others and I hope that we all might have some insight into this and why in the not too distant future.
Hi Kay/Matt
I think the forum is developing well, and hopefully it has been of help to the new sufferers in particular; I wish it had been around when I first got diagnosed!
The key focus should be widening awareness and possibly geographical coverage so that usage reaches the level of critical mass.
Best Wishes
Neil
