Progressive bone disease diagnosed and scared

Hi I know this is not your thread but just wonder where about you are, if UK I don't understand why you haven't seen a consultant yet if your hip is so bad

I did see a consultant privately in May 2016 and had an xray as my GP refused to let me have an xray on the NHS. The consultant said I should have a new hip sooner rather than later and I could be in a wheelchair by Christmas. My GP said I should see a rheumatologist first who took more xrays in September. They did not bother to give any updates to my GP about the xrays, but booked another appointment to see them in January, when the rheumatologist said my hip was in a bad way based on the September xrays. She decided I should have a CT scan of my pelvis, but also of chest and abdomen to see if there were any other problems. In March she phoned to say my heart, lungs, kidneys and liver were clear but my hip was 'orrible. Last week she wrote a letter to my GP to say I should have a new hip. The GP has filled in a form to see if they can get funding. She could not tell me how long it will take to get an answer. She said if we are refused we will appeal! 

That's disgusting, I don't understand what your GP is on about, he or your rheumatologists should just refer you to an orthopedic surgeon and he will be the one to organise your hip replacement, go back to him and tell him this.

You shouldn't be suffering unescarrily as you are.

The rheumatologist dumped it back on the GP. I saw another GP yesterday as mine is on holiday and she said that funding was the way forward and I am in the pipeline. Surgeons cannot do the op unless the CCG has agreed there is funding to do it, it seems. 

Sorry you are not getting the referral you need, its not up to your GP to source funding for hip replacement, as I said before he/she needs to refer you direct to orthopedic surgeon, where abouts are you in UK and if you don't mind me asking have you moved here recently

I have lived here at least ten years in the South East of England.  My GP is not sourcing funding she is asking the local CCG to fund it. They have meetings every so often to decide what they fund and what they do not fund. 

As usual its the postcode lottery that's standing in your way, your next step is to contact your local mp and get them involved, iv never known anyone to struggle getting a HR as you are, if anyone else does then come forward and give some advice to get something done

I think the CCG has to agree to all funding. If I went to see an orthopaedic surgeon they would still have to get funding through the CCG.  There has been a lot on the news about CCGs in the Midlands turning down people who smoke or are overweight for example. 

My local MP is Theresa May, I think she is a bit busy at the moment. 

Yea think maybe she is, yes they are cutting back but obviously its different here because my Dr referred me and the consultant sorted the rest, simply because as he put it, your Dr knows a little about everything but not an expert in anything and I'm an expert in bone/joint problems so here he's the one to get the go ahead.

So how long will you have to wait does your Dr have any idea

Just heard that I have got the funding, a few minutes ago. It has taken around four weeks. Unlike you, I suppose I had already seen an orthopaedic surgeon last May who had said I have a dodgy hip and then the rheumatologist got involved! Where do you live?

that's good news, so hopefully it wont be long before they can do the operation. From everything I've heard it is a lot easier than a replacement knee.

I am not sure that I can have the operation that soon as I keep hearing on the news the government have got rid of the eighteen week limit, so it could be ages. Should be interesting, but at least it is one hurdle over and champagne time! Apparently a knee replacement is extremely painful.