Further to my last post about an appaling consultation with current rheumatologist I'm trying to get my dizzy head around the above issue.
I've read here that many have have good outcomes following consultations with Prof. David Cruz or Dr Giovanni Sanna at the London Bridge Hospital, so am considering going down this route in order to get things moving in - hopefully - the right direction (three plus years as a practically non-functioning blob is, well, enough).
So...if anyone has been down this route and can clarify, as follows, I’d be truly grateful...
1) if I do go and they put together a treatment plan, is this something my GP will follow (thinking here of shared care agreements and how this works when private consultations are involved). Also worth noting that my GP is less than helpful.
2) if a different drug regime is prescribed, will I have to pay private prescription fees or are these available via an NHS prescription (I guess this could be quite expensive).
3) following an initial private consultation, is it possible for either of these doctors to request a transfer of care to the NHS. Thinking here of transfer to Birmingham Lupus Centre of Excellence, since travelling to Guys on a regular basis may be beyond me, at the moment.
I think the bottom line here is that if it were a matter of six to twelve monthly treatment reviews (and then management via NHS GP) then I could manage private fees. However, if more intensive investigations or treatments were needed, then this would be a real struggle (impossible) if I had to pay privately.
I really need to do something to try an get some health back but am concerned that I may end up 'locked out' of NHS healthcare (such as it is!). So...any advice or tips anyone could give would be very much appreciated.
By way of an update...I have two appointments coming up with opthomologist and neurologist. Once I receive letters following these consultations I'm going to move forward, one way or another.
Annoyingly, letter following recent rheumatology appointment states that he cannot 'clinically substantiate any symptoms which require an escalation or change of treatment' (he was not even prepared to discuss symptoms!). Sigh.
Thanks all xx
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Foggyme
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My understanding is that if you see a consultant privately, they might assess you as having a different condition from your NHS consultant, and might recommend a different treatment and/or monitoring regime. So long as you are under their care as a private patient, they are your caseholder and consequently would monitor, investigate and prescribe for you. You would have to pay for all this as a private patient.
If you wanted to see them only for a couple of sessions - for example, to get an assessment and a report to take back into NHS care, then no NHS clinician is obliged to accept the findings or recommendations of the private consultant. That's not to say they will not follow these recommendations, but they might well not do so - because the NHS clinician would have to take all responsibility for your care from that point on. If they are not suitably qualified to underwrite all the recommendations of the private practitioner, they would be in a vulnerable position re negligence claims etc. That would apply to recommendations to transfer care to a different NHS treatment centre, as well as recommendations re particular drug or monitoring regimes.
In general, "shared care" arrangments are dependent on how
far it is possible to separate the components of your treatment. If they can be separated, eg if you want to add a particular treatment under the care of the private clinician which just supplements your NHS regime, that may be possible. You'd have to pay for that component though. But if the treatment is inseparable (eg the private consultant wants to put you on a biologic, whilst the NHS wants you to have Azathioprine instead), then you have to make a choice between them.
Hello and good morning to you whisperit and thanks for your swift response.
What you say makes perfect sense, unlike the various health care systems designed to help us! It's a bit of a nightmare, isn't it.
Based on what you say and given my current circumstances, it sounds like going down the private route for a 'quick fix' may not be the best option.
Going to have a good think but I suspect the outcome - for the moment at least - will be that I stick to my original intention and try to get an NHS referral to the Lupus Centre of Excellence at Birmingham.
This is the only time in my life where I find myself thinking that great wealth (in the financial sense) would be a distinct advantage...how sad ☹️.
Thanks again for your wise words...onwards and upwards...eventually...hopefully 😉.
Whisperit gave an excellent summary of how the private and government systems work in the U.K. As an American, I was baffled as to how a patient would use both private and and NHS doctors. I don’t think you would necessarily get better care if you paid more money. The NHS has better outcomes than we have in the U.S. I can see now why you can’t go to a private doctor and then have the NHS doctor change medications and monitor. That would be the case here if I went from one private doctor to another private doctor. The doctor prescribing the medications and ordering the tests has to be responsible. So I am in agreement that your best approach would be to get referred to a specialty clinic so that you would have a team working together. I do think it will be a big problem if, for example, a private doctor recommends a new medication the NHS doctor has not felt was indicated. Good luck to you on getting that referral, and I hope it leads to better treatment.
Thanks KayHimm. The NHS is marvellous in many ways...for instance where acute or emergency treatment is required.
However, it's organisation and management is not suited to modern day practice...nor is it built and organised to meet the needs of those with chronic or multiple medical conditions. Add to this the fracturing of national standards of delivery, now governed by local Clinical Commissioning Group et al...and it truly is a postocode lottery where accessing appropriate (or good) care is concerned. And it often depends who you see on the day - rarely the same GP or consultant.
The idea of trying to access private healthcare is born out the frustration of being dealt with by a...to be honest...very rude and condescending consultant who is not even prepared to discuss symptoms - despite having a clinically confirmed diagnosis of CTD and symptoms that research shows are associated with that condition (many of which are unknown or unacknowledge by him). To the extent that I have left the consulting room in tears (most certainly not like me) and even wondered if I'm just going mad...
The value of a private consultation is that the consultant 'consults' with you...reads notes, takes a full history...and has time to talk through options, treatment plans and such like, making decisions together about the best way forward. Not having to wait nine months for another review is a distinct added bonus 😀. And oh if only this was available to all patients...NHS and private alike.
And now I feel that I've been 'ranting', so sorry for that.
Have to say that despite the many drawbacks of the NHS I'm heartily pleased that it exists. I only have a basic understanding of the US system of health care but being subject to a system that can potentially turn people away without treatment (in extremis, to die) is something that I just cannot get my head around.
Agree with what you say about the NHS referral...going to go for that. It won't be quick...and may not even be possible, but will try, and keep trying....with a large element of fingers crossed 🤞.
Really appreciate your best wishes for referral and better treatment, so many thanks for that. Will post an update when I have one 😉😀.
It sounds like you are very unfortunate to have the consultant you have. He really should be able to explain to you why he is not ready to change your treatment. That would be a difference in the U.S. For the most part, we could simply go to another doctor. I can hear that you need a second opinion to feel confident you are getting the best care.
We have the same diagnosis and also orthostatic hypotension. I am curious, as I see in your last post, that your rheumatologist did not think certain symptoms were autoimmune related, what they were. I am just asking because I may have had a similar experience.
Hi KayHimm. Know you’ve asked this before and I couldn’t say (someone else's post), so thanks for asking again. Here we go...
Apart from the 'usual' (joint pain hands and feet, collapsed ankles / foot deformity (wear orthotics), pain in shoulders / neck (prolapsed discs C4 - C7), frozen shoulder, issues with tendons...(apparently none of this counts because I can walk unaided and don't have deformed hands (do, with changes on X-ray and ultrasound but hey ho..)...
Rashes - occasional malar and what I think may be Lupus chilblains in right toes). Livido reticularis (diagnosed by dermatologist - rheumy says cold wewther and crossed legs!!)
But here are the ones I think you specifically refer to...
GI issues / dysfunction: fullness after eating little, heartburn, reflux, abdominal discomfort, no appetite, weak / dizzy hour after eating (no option but to sleep).
Facial, sinus, ear pain (and multiple infections - improved slightly now on steroids). Bone pain over bride of nose plus nose bleeds, frequent crusty nose.
Orthostatic hypotension (BP observations / 'non-dipper at night (indicative of orthostatic hypotension / autonomic neuropathy - no tilt table test - yet).
Loss of balance, lightheaded, vertigo, acute travel sickness, muscle weakness on repetitive action, breathless and cold sweat on exertion.
Difficulty standing for any length of time (or drying hair etc.).
Problems with temp control (swings 35-37.6) - bouts of low grade temp interspersed with freezing cold like you couldn’t imagine.
Peripheral neuropathy, parasthesia (worsening - whole body, even in head 😳). Nerve pain plus peculiar trickling 'waterfall' feeling.
Recently developed issues with memory (knew where I'd parked the care but no mental map of how to get back to it etc. - frightening 🤨.
Urinary dysfunction - permanant urgency (six times a night partially fixed with steroids but day time a nightmare). No stress incontinance but a little 'damp' on occasion. Sorry to say 😢.
Blurred vision 80% of the time (punctual plugs and ciclosporine eye drops). Eye pain, permanent headache.
And the most difficult to deal with - fatigue and exhaustion - all the time.
Sorry for the long (but not exhaustive!) list...but you did ask 😳🤔😉😀.
It sounds terrible and I swear on anything you like...I'm not making this up or exaggerating (saying this more to reassure myself).
And none of these symptoms are, apparently to do with CTD...and none can be clinically substantiated...apparently. Despite extremely high ANA and c-ANCA, on CTD diagnosis (both 1:1800).
So...there you go...any comments appreciated, particularly if they involve telling me that I'm not mad (though of course I could be...or perhaps should be 😉).
You have a lot of very difficult stuff going on. My heart goes out to you. I really think they will find the cause even if it takes a while. I recognize some of your symptoms, which, at least in my case, turned out to be related to autonomic dysfunction. When is your tilt-table test? Is this what your doctor said is not related to autoimmunity? Know you are not crazy! Also, feel free to message me.
And yep, rheumatologist says none of the above is related to autoimmunity.
Tilt table test...it gets better...GP insisted on sending me to ENT to get this arranged (yep, know they don't deal with this, told him so...on two separate occasions...but he insisted. And that made for another very bad hospital appointment...ENT consultant seemed to hold me reponsible for being somewhere I clearly shouldn’t have been). Very frosty time.
But...ENT is at least writing to my GP to tell him where to refer me to (what I asked GP for in first place)!! More waiting!
You really couldn’t make it up...and it’s such a relief to hear someone say that I'm not crazy 😉. Thank you 😊 xx
Well, in your case it does sound like you are not getting very good care. What I will say is that many years ago I was sent to an ENT for certain symptoms (think that is common to rule out vestibular issues) and then a neurologist. So it is good that the ENT got things moving. Sometimes they just diagnose OH on symptoms and treat it as in my case years ago. Your symptoms of getting dizzy drying your hair are pretty classic. You also have concerning GI issues. Have they sent you to a GI specialist? There are things they can do to help you, so, frankly, I am surprised you haven’t had investigations. They do not like to do the tilt table test unless they really need the information. That is because it is a horrible test. You have to stay upright until you faint! As far as the dysautonomia, is your doctor maybe just saying that it is not clear whether it is related to your autoimmune disease? You can’t prove the connection as with kidney disease. But that does not mean you don’t treat it. And my neurologist does express it as « your autoimmune disease has damaged your nerves. » And he is ready to treat if I deteriorate. You need to see a neurologist and a GI specialist. Until then, eat small meals, move your feet while standing (will find a good video for you) stay hydrated and keep body temperature steady. You are struggling with so much. You need answers.
My rheumy is saying categorically that the symptoms are not related to autoimmunity...think there are maybe two issues - he's not aware that they can be, or he's not prepared to believe that I have these symptoms.
And he made it quite clear that he's not prepared to alter current treatment (despite the fact that the very low dose of azothioprine is not effective, that I'm still on steroids, and would prefer a steroid sparing treatment plan).
Had to ask GP to refer to neurologist...will see what they say.
Gastroenterology...yes, had endoscopy etc...multiple ulcers, reflux, acute on chronic gastritis. Sent for barium swallow (difficulty swallowing) but discharged via 'paper' clinic because swallow was normal. And yep, need to go back but will have to start again as a new referral.
So, plan to wait for referral to Birmingham and try and get treatment via multi-disciplinary team...(to include gastro) with perhaps better joined-up thinking about what's actually going on.
It's all a bit of a mess and I'm getting worn out fighting...
Oh, that is really hard. I know it is discouraging but good you are trying to get to a specialty center. The autonomic stuff is uncommon and difficult to diagnose. But you have not had key tests yet. I bet the neurologist will order a tilt table test. You have not had the new « smart » pill that can diagnose motility problems in every part of the GI tract. I am very surprised your rheumatologist is categorically saying your problems are unrelated to your autoimmune disease. Motility issues are pretty common. Make sure you let us know what the neurologist says. Wishing you the best!
Thank you, Foggyme. It gets more complicated when consultants work both within the NHS and privately - as many do. I first saw my rheumy privately in the wing set aside for private work in my local hospital. At that meeting, he said that I clearly had a CTD and he would be prepared to take me onto his NHS list from there on. So I effectively queue-jumped (guilty face) into NHS care. Btw, I can say that he did nothing special in that private consultation that he does not do in my subsequent NHS ones. That was relatively straightforward because my rheumy works in the same NHS Health Board area that I live in; so it didn't need any extra paperwork or anything - the referral letter my GP sent in for the private referral was all that was needed.
In one possible scenario, you could see one of the B'ham Centre consultants privately and seek to be transfered to their NHS list thereafter. If that specialist centre has a straightforward agreement to provide specialist services to patients from your area of residence, it might "only" need agreement from your current rheumy to get your care transfered. But if there is no such agreement, you might also face some sort of financial gatekeeper process - like the one Wendy has been battling in West Wales - because the internal market in the NHS has introduced finance managers into clinical decision making.
You could try ringing up any consultant who is based at the B'ham centre but who also works privately to ask whether this scenario is realistic? Their secretary will surely be used to fielding such queries anyhow.
Hello again whisperit ...so, following your reply I've been investigating, and here's what I found out:
None of the Lupus consultants at the Birmingham (Sandwell) Lupus Centre of Excellence undertake private consultations. Not useful for me at the moment but a very good thing for all...means that they focus their Lupus Excellence on NHS patients. Hurrah for that.
The general rheumatologists do undertake private consultations...but not going down that route because it may just lead to another dead end...and I don't want to take that risk.
They do take out of area referrals but unfortunately Prof. Gordon is retiring soon so I'll be triaged and allocated to one of the other two Lupus specialists. She was at pains to say that trained by Prof Gordon. So now it's a matter of negotiating referral through GP at this end. And that I will do. Whatever it takes.
Have to say I spoke to the most marvellous smiley lady (Prof Gordon’s secretary/PA), who was extremely helpful about advising the best way forward (referral from GP versus current consultant, what to include in the referral (more importantly, what not to include 😉). So, she helped me sort out a 'plot' and even asked for my name so that she can look out for the referral. Not what I'm used to. Amazing 🙃.
Think I'll give her a ring to let her know when the referral's on its way - ever hopeful that it will be.
So...not going to be quick (bearing in mind I'm waiting for feedback from neuro and opthomologist before approaching GP). Be well into the New Year before I can even approach GP....but at least I now have a coherent plan (I think 🤔) and feel much better because I'm not simply sat stewing...and declining 😉.
Thanks for all your words...fully aware of how much effort it sometimes takes to contribute...so ever thankful for your effort and kindness.
I’ve been in this same boat, went to see a rheumatologist and things were looking good until my bloods come back normal!!!
I feel like I’ve not much time left to wait so I paid to see D Cruz privately. I did this not for a diagnosis but to make sure I was on the right path to a diagnosis. He wrote to my doctor, and she did a 2nd opinion referral under the nhs, which we are entitled too. This has now been granted.
I did have to receive a letter from my current rheumatologist to say no diagnosis had yet been made. X
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