I am looking for some advice on going private for rheumatology services.
I recently paid for some rheumatology blood tests via the Nuffield private testing service. The majority of results were in normal range (the ESR and C-Reactive Protein were both raised, but I understand that is not a marker of anything specific, just that there is some inflammation.)
The only real result was the ANA at 1:640, but the additional auto-immune tests were negative (image attached).
(Note: the Nuffield blood tests don't come with any medical advice before or after, you just get sent the results).
I am not sure whether I now need to seek out a specialist for more advice (I don't have private health insurance so appreciate there will be a significant costs, but experience with the NHS tells me I could be waiting a long time to even get an initial appointment, if I am referred in the first place).
I can provide more background health information if it is useful, around why I had the tests, as well as daily rashes I have, joint pain and skin issues etc, but I would stress I am not in daily or debilitating pain for any of the issues I do have - its more like I have multiple small things that are each frustrating in their own way. From what I have read of other people's experiences, specialists are not interested if someone has positive blood tests results and only minor symptoms - instead it's a case of 'go away for a few years and see how it goes' (this is my interpretation of posts, sorry if this is wrong!).
So I really wanted to see if anyone has advice along the lines of 'this doesn’t seem like something that requires a specialist/ treatment/ investigation because of these reasons...' .
Or if anyone has decided to go private rather than NHS and had a good or bad experience compared to what they expected I’d be interested to know.
Thank you
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Punkysloth
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I suspect that, even if you get cover now as you don't yet have a diagnosis, after a diagnosis of a chronic condition is made you will subsequently either be declined cover at all for that condition or the renewal premium will be unaffordable for the normal citizen. It is what we try to get through to people about the risk to the NHS and parallel private options. The medications you need can cost in the thousands per year - I'm on a biological that is about £12K per year, just that one drug. People in the USA with chronic conditions often don;t have cover - especially if they are no longer working and not eligible for Medicare or MedicAid.
Private medicine is only a way of jumping the queue - I'm not being nasty there, almost all privately practising consultants have a day job in the NHS so if they are duff in the NHS, they will be duff in private practice. And they aren't a charity - so the premium charged is going to reflect that such drugs may be required in the future.
In terms of surgical procedures - most private hospitals don't have a fully staffed ICU, often there isn't even an anaesthetist on call overnight - so if something goes wrong, you bleed or collapse, they call an ambulance and transfer you to the NHS. If there is time. I knew someone who had a "minor" nose job in the private clinc about a mile from the major trauma centre. She bled overnight - no ICU support and it takes time to transfer an unstable patient. She didn't make it.
Are you saying your medical insurance in Italy pays the £12k for your Biologic drugs?
In UK, that can,’t happen. All Biologic drugs including Rituximab are provided free to patients on the NHS …they cannot be prescribed Privately. If you are being treated Privately…..you have to transfer to a NHS rheumatology department to get Biologics.
Most RA patients being prescribed Rituximab/Mabthera are now started on a Bio Similar which is much less expensive. Since Rtx came off Patent around 2019 funding has been much easier to get for a Bio Similar& patients appear to do just as well on these drugs.….I’m surprised that isn’t the case in Italy.
Also in the UK having your first rheumatology consultation Privately will usually be quicker than waiting for an NHS appointment, but once you have had that appointment with your private doctor, and he agrees to transfer you to his NHS list, you go on the list exactly the same as any other new RA patient. You don’t get pushed to the front of the queue…all these “Private to NHS” appointments are strictly controlled by the NHS….this prevents queue jumping. If you wish you can still see your rheumy privately, but you pay for that.That cost will depend on where you live & cost anything from say £175 up to The Sky’s the Limit.
Also, Doctors working in the NHS are contracted to work a set number of NHS hours…they can’t just pop off to their Private Consulting Rooms when they feel like it. That is why Private appointments may be very late in the day or at the weekend.
Very few , if any, private hospitals perform serious cardiac or cancer surgery…thankfully patients very seriously ill are usually treated on the NHS.
No, that wasn't what I said - the system here in Italy is very similar to the NHS so I am in the state system, I don't need private insurance. and it is free at point of delivery although some of us have a small co-pay for some things. Chronic illness and low income are grounds for exemptions. Strangely, most of the EU and a lot of the rest of the world DOES have an equivalent to the NHS - it is NOT unique and nor is it always the best in the world. It is probably the lowest cost to the user at point of delivery. Not the same thing at all.
I beg to differ though - biologics CAN be prescribed privately for you to pay for yourself - someone on my home forum did the homework, I also didn't suggest that Private to NHS meant jumping queues - but going entirely private whether via private healthcare cover or paying out of pocket does. If I were to go privately to a rheumy and could afford to pay the costs of all the tests - I wouldn't need to be transferred to their NHS list. Plenty of millionaires about who do just that.
What I tried - obviously not clearly enough - was to address the situation of taking private insurance to get a diagnosis or if you have a diagnosis of a chronic disorder. Star13 seems to have covered it better. If the insurance company considers you a poor risk and one that is likely to cost them more than the premiums you pay then they will quote a massive premium or directly say no. Just like car insurance. Or house insurance when you bought a property that is likely to flood ever year or two ...
Well someone should tell all the Private Patients who had to be transferred to a NHS Rheumatology Department, to get Rituximab & other Biologic drugs…they need not have done so.
Quote:
“Nice regulations state Biologic therapy can only be prescribed by a consultant rheumatologist. Your GP cannot offer it to you. . So if you are not under the care of a rheumatologist do ask your GP to refer you.”
You can’t legally write a cheque…no matter how rich you are, unless devious doctors obtain these drugs outside the law.
The Nice statement means an NHS Consultant not a Private doctor. It may be the same person…but if you have infusions, you have to go to an NHS hospital to get them. Free at the point of delivery .
Unless things have changed recently, BUPA & similar PMIs in UK will not pay for them. You are told to use the NHS….
Believe me- these days nobody would boast that the NHS is unique.It is struggling & because no government will take the chance of introducing some sort of insurance Co-pay type of system- things will not improve any time soon.
But now that actually getting to see a GP is nigh on impossible, I think the general public seems to be more willing to accept that “free from cradle to grave” except for one’s N.I contribution, is not going to be enough to get the medical treatment we have come to expect here.
If anyone reading this…living in U.K. .is receiving Biologic drugs Privately,please holler.We would all be interested to hear about it.
Really? At £12K per annum solely for a single drug? At a basic estimate. Glad you have that size of pension.
But that is my point - none of the private insurance companies will fund it, they cherry pick the easy/cheaper stuff and leave the complex and costly to the NHS, including mopping up their messes. If you want those drugs and pay out of pocket to see a rheumy and then also for the drugs, you can probably have them. It is an option - BUPA and co persuade you they are saving you money.
explains the position in sections 3 and 4. A private consultant specialist can prescribe - but it must be made clear to the patient that all arising costs for medication and monitoring are down to them, paying out of pocket.
“ It might be affecting your ability to work, enjoy your family life or have a good quality of life. Biologic therapy can only be prescribed by a consultant rheumatologist. Your GP cannot offer it to you. So if you are not under the care of a rheumatologist do ask your GP to refer you.”
But you say “Biologics CAN be prescribed for you to pay privately “
But my point is according to NICE they CAN’T.
You are right that if you have PMI…..you can see a consultant in a Private hospital way sooner than waiting for a NHS date. That is why both here & in the US, companies now include PM I as a “perk of the job” …so that their staff can get treated & back to work fast.
But it won’t get you Biologic drugs in U.K…It wouldn’t apply in the US as the rules are different.m
In England the only way to get Biologics…. is to be prescribed them by a National Health Service consultant working in the NHS system.
The Harley Street Private Rheumy Consultant cannot legally do that.
Things must have changed - I have tried to access NICE edicts in the past and just got "Not available outside the UK". BNF certainly isn't still. Nor can I use OpenAthens - wouldn't be able to in Scotland or Wales, never mind Italy.
The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care. NICE is an executive non-departmental public body, sponsored by the Department of Health and Social Care.
So you see see…what NICE recommends does matter…& is usually carried out.
I don't THINK I said it didn't. I merely said I have not been able to access NICE for years. But you are obviously determined to have the last word ...
I’m not quite sure if you are asking about private medical treatment or getting private medical health insurance?
First of all, for medical insurance you would have to declare any tests, treatment, symptoms and consultations that you have had in the last so many years (whatever that insurance company requires) even though you don’t have a diagnosis, they will rule out any condition for treatment that has those symptoms in the future and exempt them from any cover. Even if you get cover, premiums are very expensive and some insurance companies dictate what Doctors you can see. You also have to get authorisation for any treatment or consultations that you want and many are clamping down on that. It really depends on the type of policy you have and what it covers you for.
If you just want to find yourself a private Doctor or surgeon and pay for whatever treatment or consultation then that is an option that’s up to you. Many people now are saving up and choosing to pay to go private. You can imagine can’t you some poor pensioner who has paid all their working life into their taxes etc and then need a knee or hip replacement as they can hardly walk or a heart bypass and told they will have to wait years. Who could blame them for not wanting to waste valuable years if they can afford it.
I believe in having a choice in life and spending your money how you wish.
I think there are excellent rheumatologists on the NHS and in private practice (often the same ones working more profitable extra shifts) and similarily there are awful ones. I think the important thing if decide to go private is to find a highly recommended specialist; perhaps in your case (bearing in mind the speckled ANA pattern) someone with a speciality in (and high reputation relating to) connective tissue diseases including SLE/lupus and Sjogren's. Having said that you can I think be ANA positive without having an autoimmne condition and be ANA negative and have one.
While I have no idea whether the positive ANA in your case signifies anything, it seems that this positive ANA, along with rashes, joint pain and skin issues, should in theory be sufficient for your GP to refer you without massive delay to a rheumatologist. Maybe see what your GP says.
Though ofc GPs are gatekeepers in UK system and quite often ill-informed ones with a finanicial interest in restricting who goes through the gate. Stubborn GPs quite often seem to be a principal reason why folk with rheumatological symptoms go private. While in other cases, the GP just requires a bit of a nudge.
As someone who has both tried the NHS system and the private system of seeing a rheumatologist there’s a few factors to consider.
Firstly with the positive ANA and symptoms, you should have a case for your GP to refer you to NHS Rheumatology. You sound very similar to me in having a positive ANA but all other major markers are negative (Lupus etc) except I have a low C4. I was diagnosed with Undifferentiated Connective Tissue Disorder and I also have Raynauds. Undifferentiated just means there is some sort of autoimmune disorder going on but it doesn’t fit into the category of any one particular autoimmune disorder like Lupus for example. It can later change to one type but sometimes not.
There is a long waiting list for rheumatology on the NHS as you can imagine with our healthcare as it is but it’s worth starting the ball rolling as it’s the best way of getting any tests done such as X-rays without forking out thousands privately (I could never afford the testing and with my many many medical issues I’d never get health insurance) and now you’ve had the tests I’m not sure where that leaves you standing regarding health insurance but worth enquiring.
Very often the private consultants are actually the same consultants you’ll see at NHS, you just pay to see them quicker and for a bit longer! But unfortunately it doesn’t guarantee you they will be any better listening just because they are being paid extra for it! So it’s worth checking that before you book and deciding if it’s worth the price. I actually once got declined by head of rheumatology at my local nhs hospital so booked to see a private consult at local Nuffield instead who turned out to be the very same head of rheumatology and once she examined me privately referred me back to the nhs system herself!
So yes I would say overall depends on how keen you are not to wait more than anything and if you can afford testing. The private consults can refer you to the NHS I think… aswell if they feel it’s warranted enough for tests etc so that could be something too (though don’t swear me to that). I’d first and foremost talk to your gp, show your results and see what they say and whether you fit criteria for referral. You’ll need a letter from them to do a Nuffield private consult anyway. You could always start the referral for nhs and if you grow impatient book to see private. No harm no foul as they say. Good luck!
I waited 7 months for an NHS appointment and it wasn't very useful, but it is very much dependant on where you live in terms of waiting times and whether that Rheumatologist is knowledgeable enough about connective tissue disease. I don't think mine knew an awful lot, as she's referred me to dermatology to treat erythromelalgia (which is a 15-18 month waiting list) and told me my blood tests were negative when my ANA was positive. I don't know the titre/ratio thing, but my pattern was "cytoplasmic speckled", so it might be that it's not relevant to anything in my case. I think with you having just "speckled" might be more useful, but I'm not an expert by any means! I also have rashes, joint pain/swelling/stiffness, Raynauds, Erythromelgia and fatigue and waiting to hear about a second opinion with the NHS.
If you can find someone nearby who works privately and for the NHS, who is knowledgeable enough, you could see if they'll do an initial appointment through private healthcare, then transfer you to their NHS list afterwards. If I were you, I'd speak to your GP about a referral to an NHS rheumatologist and try to find out the waiting time, as some people are seen very quickly. You can always cancel the NHS referral at some point if you decide to go private. I don't know the costs of going private, as I'm trying to figure that out myself.
How did you get the bloods from the Nuffield…who referred you..or did you just decide which tests you wanted yourself?
To get a diagnosis of anything you either need to speak to your GP to get a referral to a Consultant at a hospital near you…or if you know anyone who has Private rheumatology treatment….ask their opinion in their treatment…the former is preferable.
Have you seen your GP & discussed your health?
As you say PMI is very expensive…depending where you live…your first consult could easily cost £500+ If you get a private referral you can call the consultant’s secretary.to get an estimate if the doctor’s fees.
As you have already had symptoms…very few if any Private Medical Insurers will accept you
I had PMI throughout my working life & luckily I had very good diagnosis & treatment..but my RA appeared years after I joined a PMI.
I'm not clear you understand that you dont have to choose between private health insurance for everything or sticking with the NHS for everything.
Many people pay for a private consultation as a one-off and then revert to NHS care afterwards. This has the benefit of not locking you into a payment plan - you're just paying a couple of hundred quid for a single consult. If that initial consult turns out to suggest you have a condition that requires ongoing care, you should at least result in a referral letter to the relevant NHS specialist that may be better than the average GP might write.
Depends on NHS hospital maybe. The one I went to was not a Centre of Excellence and I was told I did not have a systemic autoimmune condition like SLE or Sjogrens as I walked in through the door. Symptoms did not come into it.I had a strong positive ANA but other blood tests were negative.
Pre 2019 no doubt they would have had to use earlier criteria like getting more than 4 out of 11 symptoms.
Outcome would have been very different.
I had to go private (without insurance) for my UCTD diagnosis. I was really poorly, it was a nightmare. All been fine since.
I think they want to keep case loads down so conveniently criteria used to define a particular research population, are being used to scope which patients to see.
Be careful, until you get something like a positive anti ds- DNA or similar result so you score 10 with the 2019 criteria, there may be specialists who are dismissive like mine was. Even told me my many symptoms were in my head.
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