Private

[Sjhoney]

Hi, has anyone on here gone down the private route and, if so, what was your experience like? I’d be interested to here the difference with NHS, I’m thinking you probably get more time?

Thanks!

[oldtimer]

One of the problems is that it isn't a long term solution. It may work for a one-off consultation - when you do get more time - but the investigations and treatment are just too expensive, and in some circumstances unavailable privately.

I did have a private appointment with a consultant who I had found out also worked locally as a NHS consultant. The wait was still six weeks (better than the six months on the NHS). And there was more time to discuss the options for treatment (I had moved from another area). But imagine trying to arrange an infusion of a biological drug privately! There just isn't the expertise available in the private sector. There aren't the staff available in the NHS either and that is the problem. Campaign for more funding!

[Sjhoney in reply to oldtimer]

Yes I see what you’re saying, or should that be hear? Anyway, I’ve never felt my relationship with my rheumatologist has been great. I don’t want to be her best friend or anything but she has very little empathy. I’ve tried all the dmards but they gave me horrible side effects, acute anxiety mainly which renders me incapable of functioning, but she says if I don’t take the meds there’s nothing she can do for me. I had an X-ray 3 years ago, she barely looks at my joints, never mind examine them. I feel like a neurotic pest most of the time. Not a great place to be 🙁

[helixhelix in reply to Sjhoney]

Change your rheumy? Might be easier and cheaper.....

As far as I’m aware private rheumatologists can’t prescribe biologics, unless agreed through the same NHS funding protocol. Which makes sense in some ways otherwise people could pay £150 for a single private appointment, and then the NHS could have to pick up the bill from then on for these expensive drugs. I wish the criteria for them were a little more flexible, but still do think that it’s right not to try to limit use a bit given how broke the NHS is.

[Sjhoney in reply to helixhelix]

Yes I’ve considered changing but when I asked the dr, ( I see a different dr every time 🙄), she said she didn’t think it was the done thing. I didn’t have the strength to question her.

Thanks for your advice 😊

[Hidden in reply to Sjhoney]

I’m from Australia, and our system is different. What I will say is - find the energy to ask for a referral to a different Rheumy. I’m going through exactly the same experience and I know it’s challenging. However, it’s even more detrimental to be placing your health and trust in someone who doesn’t respect you - this is not a “take a pill and be fixed” kind of illness, it needs long term concern and care, so it’s worth the effort. I hope you can get it sorted, cheers Deb

[Sjhoney in reply to Hidden]

You’re so right Deb. My son-in-law is a surgeon and he said that he goes in and fixes things where as RD is far more complicated with many different factors in play.

I need to be more forthright which I am in most situations but I think you feel a bit vulnerable when you’re unwell. You also put yourself in their hands to some extent? Here in Britain we tend not to question doctors and they are put on a pedestal to some degree.

Thanks for your advice 😊

[Hidden in reply to Sjhoney]

I asked not to see a certain consultant again and it was noted in my notes. They were a bit sniffy about it but I haven’t seen him again. If you aren’t happy with yours I would speak to the clinic. Good luck.

[Cheylann in reply to Sjhoney]

Exactly why you shouldn't settle! Why should you not be treated properly because of your fear. Challenge them it's your right!

[Sjhoney]

That’s so weird, I had the same experience when I saw the pharmacist! She told me a whole bunch of stuff that my rheumatologist hadn’t even mentioned! Even the fact that my blood test was positive for the RD diagnosis! Why would my rheumatologist not tell me that?

You really do feel as if you’re staggering(!) around in the dark at times 🙄

[Ruth12345]

I would say change your rheumy. My experience is I have been private since diagnosis (2.5 years) due to husbands work. Oh retired yesterday on health grounds so in process of transfereing to NHS. Saw rheumy on Ssturday and he said the only difference I will notice is length of time I will have with him. He said I will still see him as ive been with him so long. So all I can say is time will tell for me, but as I say rheumy says mimimal difference between private and NHS. I hope he is correct.

Hope that helps. All the best.

[Sjhoney in reply to Ruth12345]

That’s interesting. I just think my rheumy could be a bit more flexible, it’s pills or nothing 🙄

Thanks for your reply 😊

[Mmrr]

Changing consultants is perfectly acceptable, people do it. A fresh eye might give you a fresh start.

[CagneysMum]

I was unhappy with the consultant I was appointed and so researched other consultants/hospitals in my area via the intranet. I looked for someone who was interested in research and trials because I believed this would reflect their passion ? To jump the queue I paid for a private consultation but then he recommended that I should see him at his NHS practice because they had a big team of people instead of just him, and access to better facilities..hydrotherapy pool, physio etc. It’s still not perfect (or perhaps I expect too much?) , but I’m very happy that I did this and I have far more confidence in the team of people supporting me. The most difficult part was getting my medical records transferred from one health authority to another...took 6-8 weeks!

[TheBoys]

Hi.. I tried that at the start...and two things came up. Firstly, the insurance companies will rarely pay for the support needed for ongoing conditions such as RA, plus secondly, the medication prescribed is on a private prescription which attracts it's own cost.. I paid 25.00 for a course of oral steroids. (It can be worse than this and these meds aren't covered by most insurance schemes)

The consultant was great, and offered to get me onto his NHS practice where he felt I would be better looked after. As a one off, it was great as all private care can be but unless your loaded and happy to pay... it's not the most effective route. Whereabouts in the country are you. Can you ask your GP for a re-referral to a diff hospital?

Certainly complain to PALS about any shortcomings in your existing care from the Rheumatology team

[patricia_210]

Hi I go down the private room

Consultants fee is one but I don’t have the support of a clinic where I can ask a nurse questions etc

[Sjhoney in reply to patricia_210]

I don’t really feel I have the support of a clinic. I see my rheumatologist about 2/3 times a year but nothing in between and I haven’t been offered anything. Folk talk about having a team, I don’t have any such thing 🙁

[AgedCrone in reply to Sjhoney]

If you are being treated in the NHS your rheumatologist is part of a usually large rheumatology department with a team of rheumatology nurses & other support facilities.

Why not call your hospital .& ask for the rheumatology nurse's extension & when you get to speak to a nurse, explain you need some support.

If you go the Private route there are Rheumy nurses but you have to pay each time you see them.

I recently had ultra sound guided injections in my feet privately. Afterthe consultant's fee, plus the anaesthetist, a theatre fee & other fees it cost in the thousands. It was my choice as in my particular case the procedure is not available on the Nhs......so Private treatment can be eye wateringly expensive...& Tbh you often see the same practitioners you would see on the Nhs...just quicker & more often.

[Rubyroo1]

I went private at first but was lucky to have it through work , I am so glad I had it. I saw the Rheumy within a couple of weeks and had bloods/xrays/ultrasounds done within a month/6 weeks of diagnosis. I did have to transfer to the NHS after 3 or 4 visits to the Rheumy, as Bupa wouldn’t pay for anymore, or on-going tests and do not support chronic conditions or pay for long term meds. If however, I had waited for my first Rheumy NHS appointment, I would have had to wait 5-6 months - I don’t think I could have coped waiting that long, depression was settling in and wasn’t sure what I would do. I don’t seem to have this “team” people talk about and have now phoned the nurse helpline 3 times for the same issue over the last 3 weeks - I am still waiting for someone to call me back. I am lucky that the Rheumy I saw privately took me onto his NHS list . I also still gave his private hospital email - so if things get desperate I email him on that. It seems to be that it really is a postcode lottery in the NHS system of what is /isn’t on offer and how long waits are, especially when this can be extremely painful and debilitating! I hope you manage to get sorted soon ! X

[Sjhoney in reply to Rubyroo1]

That sounds really good! My husband has bupa with his work so I may go down that route if this dmard doesn’t work out for me. It’s such a tedious process 😩

[AgedCrone in reply to Sjhoney]

Sorry to tell you but as Rubyroo has explained, BUPA regard RA/RD as an incurable disease which they do not cover, & as soon as you are diagnosed they refuse to pay for Private consultations. Etc.

However do apply through the BUPAadministrator at your husband's company...you will need a referral letter from your GP, & it may be the way to get an initial Private consultation with a Rheumatologist who after seeing you, will take you on to his Nhs list. But as you have already been diagnosed it may not be easy.

Your best might be to find a well regarded rheumatologist in your area & tell your GP you want a referral for a second opinion....GP's do that all the time.

[Sjhoney in reply to AgedCrone]

Thanks for your advice. I see my rheumatologist in a couple of weeks so I’ll see how it goes with her. X

[Thingybob]

I went via private route for initial consultation and diagnosis due to wait time on nhs. The guy i saw did spend a long time examining me but then just put me on high dose of steroids and sent me for very costly scans , x rays and blood tests. The best thing about the experience was revieving advice from the rheumy nurse regarding which nhs hospital to ask for a referal to once diagnosed. The difference between the patient service offered at the hospitals local to me is vast apparently with only 1 hospital offering early diagnosis clinics with ongoing access to support via telephone consultations with nurses. Even though they are part of the same nhs trust.

So it might be worth requesting a refferal to a different hospital entirely where they offer a different type of support package ?

Having said that it has taken me 6 phone calls this week ( bad flare for 2 weeks) to get a response due to chronic staff shortages in the department. They are usually very good