Purplesheep wrote:It is really unfair on us who have had disappointing experiences with Prof. Grahame to say that it is essentially our own fault and that our expectations were too high or we were looking for a 'miracle cure'.
By talking about my experience, I am not trying to be negative or put anyone off seeing Prof. G., I just want people to have realistic expectations, and that includes the good and the bad experiences.
Really sorry about the long post, just felt like I had to say this as I feel indirectly attacked anytime someone says we shouldn't be complaining about the UCH clinic as they are so underfunded. This board should be open to express all opinions and experiences and not just the ones who show Prof. G. in a favourable light.
barkingmad wrote:Thank you Star Gazer. we can forgive an essay at 3am in the morning!
You are right, as is purplesheep and omega, to write about the negative things that happen. At the end of the day they are there to support us and are aware that many of us have had such negative local experiences that to travel all the way to London has to have more meaning.
I will email UCH to remind them that there are still some issues.
star gazer wrote: It is lack of resources and money that make the situation frustrating, More money and resources = better education and facilities for the medics involved in our care. for many the exhausting journey to London for an appointment that is full of expectation and answers can be a complete let down when things have not turned out very well at all, I feel bad for anyone who has been through that,
star gazerxx (sorry raised more than a couple of points, but hey its 3 am and i can't sleep so who else am I going to talk to x)
bree wrote:Hi Omega and Purplesheep
I am sorry if my post upset or offended you, i was in no way trying to make little of your experience or say it is all your fault, if the consultation did not go well at UCH or you did not feel you got help. I would never say that to anyone, I had to fight years and years to be taken seriously so I do know how horrible it is. Like you said purplesheep we all have the right to express our opinion and thats all I was trying to do. The point I was trying to make is that I can relate to Donna, in that I got quite angry/sad for a while that I was not been "cured", that whilst I did have answers I still had to struggle with these life changing symptoms and for a while I was quite angry and disappointed with the system. So for me I felt that was part of the problem and maybe other people felt that too.
Omega, I do believe you are right that there are a lot of admistrative errors and these do need to be brought to attention. It is right that we say what is wrong with the service so that improvements can be made. I do feel that lack of funding and resources will impact on the care that we get and it is important to address that do.
Again, sorry for any offence it was not intended and I really was not trying to silence anyone. Just trying to be positive and share the good experiences that I have had . Just to clarify I am an NHS not a private patient.
Purplesheep wrote:Omega, just wanted to say that during my appointment, Prof. G. DID have my referral letter in front of him - I don't think he had read it before the consultation, but he went through it towards the start of my appointment. In my case, this was actually a bad thing, as it was a letter from my rheumie that contained lots of mistakes! To make sure you get to discuss all the issues, it might help if you make a list what you want to address during the consultation. You can then either go through the list during the appointment, or even give it to Prof. G. and say those are the problems you would like to discuss most. Just be aware that asking about pain medication is not a good idea
Good luck and I do hope that your appointment goes better than mine did!
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