Consultant recommendation

[Backchat57]

Hello all. I am getting v tired and frustrated with the care I receive from my rheumatology department and need to look at other options. I am in the south east does anyone have any personal recommendations please I would be very pleased to hear from you!

[Runrig01]

I’m in the South East too, with a rheumatologist as useful as a chocolate teapot. Unfortunately due to being on biologics I’ve been told I need to remain within CCGs boundaries. I had to travel 250 mile for my ankylosing spondylitis diagnosis, then transferred back to them for biologics. I have several areas of fusion including my ribs and have no chest expansion. My scores are all back to pre biologics and I e developed pulmonary fibrosis from the inflammation, yet he refuses to switch me to another biologic. My respiratory specialist says if my inflammation isn’t controlled my life span is 2-5yrs. With AS 50% of patients never have raised markers, so he uses normal markers to justify his decision. Yet can’t answer why my scores are back to starting levels, why my chest exits non existent, or how I developed PF if inflammation is controlled. It’s infuriating. I personally don’t think the south east have many good rheumatologists as the good ones seem to like being based in or near London

[Anniebl24]

You can ask to be referred to another area ie from one county to another. I have done this. It does mean that you have to be prepared to manage the admin yourself. They cannot see test results across borders etc.

[grumpygirl]

When I moved back to my current area I stayed with my Rheumatologist in Oxfordshire as I had previous experience with the team in my new home town and wasn't keen to repeat it. You do have the right to chose your own consultant (unless something has changed) You will need to get your GP and your new consultant to agree to what is I believe is known as a shared care pathway. This means I have my monthly blood tests done by my surgery/local hospital and my GP checks them and notifies me if there are any problems, and if my consultant wanted me to have xrays for example they will request them by emailing my gp and then I have to remind my gp to send the results over. It is a bit more hassle but for me it is worth it.

[medway-lady]

I'm in North Kent so Medway Maritime Hospital a much maligned hospital but its only ever been great to me. Saved my life when I had blood clots in 2014 and found my acute kidney injury in 2018. I've been under their Rheumy team for over 15 years and yes they can be a bit slow but you don't feel rushed and they do ring back. I can only speak as I find and you could do a lot worse than be referred to that particular hospital. Its often hard to park but the doctors, specialist nurses are lovely and when once I did have one problem with a trainee nurse, and called for the young registrar who sorted her out. Then she had to go for more training and the dreadful letter she wrote was removed and I got a full and complete apology. So as in all hospitals there is good and sometimes bad but the MMH has a good RA department and I think is in tandem with Darent Valley anyway. So it depends where you are really.