How has your experience with the healthcare system been?

[MaddieHU]

Do you feel that your doctors have understood your options and needs?

[Deniseelk]

My GP, no. Clearly she does not have a great insight into RA so therefore Rheumatologist is where all help and advice is gained from. His supporting clinical nurse is fantastic from a supportive view and totally understands the daily struggles of RA so I don’t need to explain. There is never an issue of needing to beg for tests to check issues out, they are always proactive but it is all driven by me and the follow up appointments are too far apart.

[Patient0]

No, it has been very frustrating. I have been having vague symptoms for years. I knew the Dr would just put a patch on it and once you have quite a few patches (usually medicine), you have a new problem- like liver damage or kidney problems. Or a lot of things don't get taken seriously until they become a bigger problem. I have had psoriasis for at least 13 years but the Dr wasn't suspecting arthritis.

Also, food intolerances hadn't been ruled out or even suggested to me. I have had to do a lot of research and take a lot of initiative to guide the Dr. I have a biochemistry and pharmaceutical background so feel more able to find information about health problems but it has been challenging.

It has taken 8 months post diagnosis to get a gluten intolerance test. in the meantime, I have had side effects to medication such as psychiatric changes and possibly gall bladder issues. Why not check the food intolerances first?!

I was diagnosed after a foot x-ray for a suspected broken toe after 2 years. The NHS wait to see rheumy after the x-ray was 6 months!!!! I also had pain in my knee and back. I went private.

The rheumatologist didn't believe that I was having psychiatric side effects to Depo medrone. He also didn't give much advice on anything other than medicine. What about exercise, coping with fatigue, dealing with diagnosis of a long term potentially degenerative disease, dietary guidelines?

[GoatGirl56 in reply to Patient0]

I'm with you on DRs being on their own track and not listening. Fortunately, my primary is great and talks through my ideas and decisions to help battle this outside of medicine. As for as the gluten goes, just get rid of it - even without test result. You don't have to have in intolerance for it to generate inflammation throughout your body. Been off completely for about 8 mos. Never going back,

Hang in there.

[GoatGirl56]

Too many misdiagnoses and docs saying one thing and then contradicting. I want to work only with my primary but not sure I can drop rheumy completely yet... working towards it

[Kb5417]

In short no .... not fully. I am fearful of the pain this disease causes, it’s ability to fracture close relationships, it’s impact on my future health and well being and quality of life, the cocktail of medication and subsequent effects ect ect... the list goes on. Pain is subjective very much like fear .... it is what the pt says it is..... so people or medical professionals who have not experienced the impact that this disease has, holistically, on the pt cannot fully understand the impact it has on the individual at the time of consult and beyond. Plus the impact that case load and appointment timing has on the medical professional does not foster a full holistic and compassionate appointment, not to mention limited services and lack of knowledge.

[Alexplode]

My treatment on the NHS is poor. An appointment made to start on biologics next week has been cancelled because it was made too early. The reason given was, I can't have the appointment as 6 weeks has not passed since I got the letter from the rheumatologist advising that i should start biologics. As I have had the MRI and blood tests to start the biologics I said I could not understand the logic for this. Was advised to call the rheumatology helpline who don't have a clue either.

The result of this is, along with the constant pain, I am sinking into depression just grieving for the life I had 2 years ago.

[Caza]

The rheumatologist that I see, takes onboard my wishes. I’ve had excellent treatment from him but you only get 5-10mins. I’m always aware of the very busy waiting room. It would be so nice if there was a nurse or someone that I could really talk too-about diets exercising gadgets do & donts feelings etc.....