"lack of 360 degree patient care for complex cases"

I have a complex history of multilevel deformities and arthritis due to osteomyelitis as a child. I had 18 surgeries in total.

I am now in a situation where I can barely walk, I need a complex custom made knee replacement but I also need the multilevel rotational deformities corrected as much as possible to give me the best chance to relieve the knock on effect of the deformities in my ankle joint. I will also need a second stage to deal with my ankle / foot.

What I am trying to say is that I need a surgeon that can do more that your standard conveyor belt knee replacement.

When my GP referred me to the RNOH, We did not know who to choose, so we picked someone that seemed to work with all types of replacements in the market.

I had to wait 5 hours in my first appointment and when I finally met the knee surgeon it was really rushed and I felt that I could not give a detailed account of my history and where I am in terms of coping and what is possible to achieve.

The knee surgeon has "consulted" internally with the bone reconstruction lead and have agreed between them that an off the shelf implant with customs jigs would suffice. I have asked for the internal reports but they are not forwarding them to me.

I do feel that the option that I have been offered is second best.

My second appointment has been with a registar, which is fine, but considering that I emailed the department lead with many questions, I do not appreciate when someone ignores my concers and "gets rid of me by placing my appointment with someone else"

I have a completely abnormal anatomy and an off the shelf replacement would not be suitable for me. I have a report from a leading knee surgeon who advises a custom knee

I tried to have a meaningful discussion with the registrar. He was nice BUT that is not the point.

I am desperate to find a solution, and I saw another RNOH specialist privately, and his opinion of the way forward is completely different.

The problem is that my case is not being looked at in a holistic way and I am not confident that I am in the hands of the best team within the RNOH. There is no team work between consultants even though I need a multidisciplinary care.

I am dissapointed because the RNOH has really good reputation however in my case, I dont think that my care is being handled correctly.