AIBU to ask for your experiences of transferring from private health care to NHS

[JalapenoCheeseOnToast]

I have an ongoing back/SI joint problem which has left me unable to walk on 2 occasions in the last 6 months, very suddenly, and has been causing consistent pain since last July. I was seeing an Osteopath after the first incident and was being treated but after the second incident he now fears he has mis-diagnosed me and referred me to a private rheumatologist (who I have seen and has ordered bloods and scans).

I saw the GP after the second incident (they wouldn't see me for the first) and they just want to push painkillers on me and were uninterested in following up a second mobility assessment (which was their idea in the first place).

I have gone private because the condition my Osteopath mentions sounds almost identical to what I have been suffering, the GP doesn't want to know about it and I can't go on much longer being in pain and unable to walk or care for my children at the drop of a hat. The earlier these conditions are diagnosed, the better outcomes there are long term for joint damage etc. The GP refused to entertain the possibility of what my osteopath and the rheumatologist think it may be, despite fitting a lot of the criteria, and was willing to "possibly arrange an xray and make an educated guess".

My question is: now I have gone private, if/when I receive a diagnosis, what are your experiences of transferring back to the NHS? I've read that waiting times will be just as long (12-24 months) and they may want to redo all scans and tests for their own diagnosis and I really really cannot afford the private route for much longer. Does anyone have any experiences they can share? Have I made a total mistake here and should I have just waited?

Most private consultants have an nhs job too and they will refer you into their nhs clinic. I have a very odd medical condition for which I initially saw a private consultant. I needed specialist advice that was only available via the nhs. The private consultant just referred me on to an nhs college and I was picked up by the nhs list. No delay, no issues and very easy. The only issue you may have is that you may have to privately fund some initial tests, however they will normally tell you the cost of this and if it’s too expensive they will again refer you via the nhs. You may have a wait though. For reference my private appt took less than 10 days and I waited 7 months from then for nhs appt. This was pre Covid

I’ve got long-standing SI joint problems and SPD. After a failed surgery 15 years ago I sought a private opinion with a pelvic surgeon who transferred me straight over to his NHS list. It was done in a space of weeks. I don’t know if that’s changed now, though.

Thank you both - I am prepared to pay for the bloods and scans but past that I can't really do much more. It is good to hear that they will transfer over. The consultant I have seen works in 2 towns (one I live and one over 1 hour away) and it looks like he practices for the NHS in the town 1 hour away - I hope this won't affect things for me too much!

I just desperately want an answer (ideally not the condition I'm being tested for but at this point I'll take any diagnosis so I know what is happening to me!)

My private consultant referred me to a hospital that’s over an hour away. I go there for treatment now. No issue and I’m actually happier with the treatment there and the parking!

I go to a hospital over an hour away too.

There’s some good Facebook groups for SI joint problems, btw @JalapenoCheeseOnToast

Ah thank you both - that is reassuring! I've never had to deal with anything like this before (thankfully!) So now I'm in a pickle and doubting myself at every turn. My scans are in a couple of weeks so hopefully I'll have some answers soon at least.

@TheFairyCaravan what is the Facebook group? I'd love to take a read! I'm being tested for various inflammatory conditions (arthritis etc) so will probably join some specific groups when I have a bit more information

Why don’t you change GP?

I just wouldn’t be robbed off by that.

My husband has back problems and our GP examined him properly, referred him to physio and for tests and gave him painkillers.

There are some shit GPs out there but people always seem unwilling to change for some reason.

There’s one called Sacro-Iliac joint syndrome/SI joint dysfunction- SIJD which is worldwide
And another one called SI Joint Dysfunction- U.K. patients only.

Good luck with it all. It’s a horrible pain.

Can you see a different GP at your current surgery? They sound very dismissive and I wouldn't be happy with what you describe!

I can't relate directly to your condition, but did pay for private infertility investigations when I was working abroad. On return to the UK, they accepted the tests and slotted me back into NHS fertility treatment.

MIL has done similar twice in the UK. Paid private for some testing/scans, then waited for the NHS consultant. Next time she paid to see that consultant she had seen years beforehand, then referred back to GP. She can now return to see the same consultant on the NHS.

Some consultants/GPs might to get annoyed by the mix and match of private bits, but you are saving the NHS money!

Thank you for your replies - I forgot to reply yesterday!

I'm generally happy with my GP, I guess the main problem is that because the problem I'm having eases off and responds somewhat to painkillers (although never goes away fully), bloods didn't show anything untoward last year and for all intents and purposes I am a fit and healthy 30 year old, they just aren't interested. My concern is that on 2 occasions in 5 months I have had a severe enough incident to leave me unable to walk (just from sitting down or stepping out of my car) and I have had constant pain of varying degrees between as well. But I'm not considered an urgent case.

I was referred for NHS physio the first time which was a physio calling me, diagnosing my problem without seeing me and then giving me exercises to do without checking I was doing them correctly and left for 7 weeks between phone calls which, unfortunately, I don't think is adequate and I ended up seeking private physio and osteopathy instead.

I have my scans on 14th and next consultant on 25th so I'll discuss moving to NHS then :)

Glad to know from your experiences that it is possible though!

Having private scans will speed up the process slightly (it will cut out the waiting for the NHS to do it bit) but IME at the moment if you're considered to be managing, the NHS will not rush to do anything. So I wouldn't expect to get any actual treatment any time soon, but sounds like you are already aware of that.

Going privately massively speeds up the process at the beginning as you aren’t having to wait ages for initial consultations or scans. If you were to then need something more complex like surgery and wanted it done on the NHS then most consultants would be able to transfer you to their list. You would have to wait the same amount of time as everyone else on surgery - it’s effectively just a shortcut of getting on to the list.

We did it for DDs scoliosis and it certainly has been worth it. Went private for initial diagnosis and scans etc and consultant then put her on his NHS list for surgery to correct it. We are in NI where waiting lists are horrendous for initial consultations so all in all saved ourselves about a year of waiting - we would do it again in a heartbeat

My experience is the NHS is brilliant for serious life threatening conditions but a bit rubbish for things that are "just" painful.

I've given up taking to the GP about anything musculoskeletal because it's so hard to get anyone to take an interest and the waits are so long.

@JalapenoCheeseOnToast

Glad to know from your experiences that it is possible though!

Hi @JalapenoCheeseOnToast - sorry for resurrecting this, but I wondered did you get a diagnosis in the end? I am undergoing investigations for AxSpa - full spine MRI next week - and I wondered how you were getting on?

@AlwaysaLittleBitTired hiya, I ended up having an MRI and I showed no signs of AxSpa or Psoriatic Arthritis but I did, however, have a degenerative herniated disc in L5-S1 which was pressing on my S1 nerve. I've been taking amiltriptaline since May and have been back into NHS physio since July and I am much improved although still not back to full health.

Sorry to hear you are being investigated although it is good you are being seen to! I was honestly so surprised I didn't have either arthritic condition as I have (and continue to have) a lot of symptoms that go with them but I have to trust that the docs knew what they were talking about. My bloods did show a non-specific raised level to an autoimmune condition but apparently nothing serious or worth looking into.

I hope your MRI goes well! Let me know if you want to chat, although I didn't get a diagnosis, it was a very lonely and scary time and I'm happy to talk if you need to :)

[quote JalapenoCheeseOnToast]@AlwaysaLittleBitTired hiya, I ended up having an MRI and I showed no signs of AxSpa or Psoriatic Arthritis but I did, however, have a degenerative herniated disc in L5-S1 which was pressing on my S1 nerve. I've been taking amiltriptaline since May and have been back into NHS physio since July and I am much improved although still not back to full health.

Sorry to hear you are being investigated although it is good you are being seen to! I was honestly so surprised I didn't have either arthritic condition as I have (and continue to have) a lot of symptoms that go with them but I have to trust that the docs knew what they were talking about. My bloods did show a non-specific raised level to an autoimmune condition but apparently nothing serious or worth looking into.

I hope your MRI goes well! Let me know if you want to chat, although I didn't get a diagnosis, it was a very lonely and scary time and I'm happy to talk if you need to :)[/quote]
Thank you. I hope your recovery continues to go well, I know that these things can take so much time. I had my full spine MRI last night, so have a week to wait before I know the results. I am almost hoping that they find inflammation, as the orthopaedic MRIs I have had previously show nothing other than some old degenerative disc disease that has been around for a long time, and hasn't changed.
Thanks again :)

@JalapenoCheeseOnToast well, I saw the consultant Rheum last night to discuss the MRI report. No inflammation, but more degenerative disc disease seen than I already knew about. Mid-cervical spine - which apparently explains my nech/head/shoulder/arm pain; my usual L3-4 dehydrated discs (which I have had since my twenties), and degenerative changes at L5-S1, with a herniated disc at that point too (Schmorl's node), so snap!

I am still flummoxed by constant heel pain and pain in my chest wall, but they say it isn't Ax Spa, so I have to accept that. I have a referral to a physio I haven't tried before, so we'll see.

Good luck with your treatment.

@AlwaysaLittleBitTired glad you got your MRI and that it didn't show any AxSpa but I feel your frustration at not much progress. Sometimes I think it would have been easier to have had the diagnosis myself, I'm still in a constant state of wondering if there is still something underlying.
I hope the physio can help you, I'm going to ask mine to refer me on at the end of Dec (this was mentioned at my last appt) and I'll be perhaps another step closer to seeing who I actually want to see (Orthopaedics!)
Wishing you all the best x

Thank you. Good luck to you too! x