Hello all - further to my booking a private consultant rheumatologist how will it work if he prescribes more medication? I only have enough money for consultation and some scans and even then I am raiding the 'house' fund and may have to sell a kidney (!)
As far as I know I am still under the care of my rather useless rheumatologist but I suppose I can't take any recommendations from him back to the NHS?
x
I don't know much about it but does the private consultant also have an NHS practice? If so, hopefully you'll be able to transfer onto his NHS list if the consultation goes well.
If it’s just standard meds, the consultant will write to your GP and then the GP will put them on regular prescription. You might also get a private prescription at the first consult so you can get underway quickly.
If the consultant thinks you need to be assessed for biologics, they will refer you back into the NHS. But often to their own NHS clinic.
It’s actually pretty easy and honestly nothing to worry about xx
yes, that is correct. Your private Consultant will write to your GP, suggesting meds , and the GP will usually prescribe on an NHS prescription, which used to be called an FP 10, maybe it still is! Worth mentioning on your private Consultation that you are self funding .Quite often they assume that you have private health care funds.
thanks QAGS - you and someone else has mentioned this and at first I didn't know why but no I don't have insurance.
Yep, that was me. “Self funding” is basically code for “I don’t have insurance and I’m not made of money. The NHS is not helping or taking ages, please give me a break and do something - but keep my GP in the loop for meds and any scans I can’t afford. And please transfer me to your NHS clinic”. 🙂 Most consultants are very understanding.
The private Consultant will write to your GP, & if he needs to prescribe any medication you may have to pay for the first prescription , but afterwards you can be seen under Shared Care with your GP .......where the rheumatologist prescribes & the GP issues the prescription...but you will need to make sure the rheumatologist you see has a NHS practice....so that you can see him or one of the rheumatology team on the NHS.
This will be particularly important if you are prescribed some types of Biologic drugs, as these can only be prescribed on the NHS.
I’m pretty certain the private Consultation will liaise with your Nhs rheumatologist who should over see your care going forward, good luck.
Hi Brychni, apols in advance as it’s a long one here in explaining my own experience, but hope this helps ... I originally saw a senior rheumy via BUPA (who was also NHS and head of rheumatology in my hospital) for my RA diagnosis/blood tests and an isotope bone scan. I was desperate to find out why I was so unwell etc. It took 9 months to show in my blood results so I couldn’t start on any RA meds until then. The rheumy told me I’d have so many BUPA claims and increase my premiums that I should just transfer to NHS and see her in the hospital instead of BUPA consulting rooms. She said as a new patient she assured me I would get all the same care as on BUPA and not have to pay for blood tests, physio and regular consultations.As a new patient I had physio 3 times a week for a year. Lucky I know but imagine paying for that? She was right and you could get to see someone very easily in 1995 at my hospital.
These days a major consultant appointment costs between £150-£200 depending on seniority and area of expertise, and other factors and then as you say there are drugs to fund. If you were someone starting on DMARD tablets they wouldn’t be as expensive as the biologic injections if you are already down that road and need more potent meds after time, etc. I recall being told Methotrexate tablets cost approx £50 for 100 tablets and at the mo the average cost of someone being on a biologic injection is around £10,000 a year. If you have a biosmilar these figures will be less. I recall in 2013/14 when I took the original meds Enbrel and Humira being told that Humira was £500 a clickpen so to store them very safely in your fridge! I think it’s around £350 a pen now. You also have to be seeing a rheumy to get your RA med script signed and if they need to see you every 3 months in order to fulfil the regulations of your prescribed med, then it is going to be 3 lots of consultation fees just to start with. Also I am not sure if you’d have to pay for the HaH delivery as they have contracts with the NHS/hospital, so a lot to think about paying for. Then you are likely to need X-rays and maybe scans on your joints. These things are exactly as the consultant reasoned with me to switch to NHS for rheumatology. I didn’t hesitate.
Sorry your rheumy isn’t to your satisfaction and totally understand your wish to try rectify this, but is there any way your GP can refer you to another rheumy in a different hospital, logistics allowing ?
Private consultants send your GP a letter to say they have seen you and give their diagnosis/recommendation etc., and also will send a copy of the letter to you. Just as they usually do in the NHS. Sometime we don’t get an NHS letter sent to us if it’s routine and nothing different to report. GPs should always get a rheumy letter just to say they’ve seen you. If it is another consultant area of expertise (eg. I saw a BUPA respiratory consultant who wrote to my NHS rheumy as it had relevance to my treatment as I needed to go ASAP for a CT as I had adverse X-rays and wasn’t allowed to have my RA infusion until resolved) they will send letters from private to NHS .. you’re paying for that as a private patient. Not sure how it would work when it’s two different rheumys - one NHS and one private. Differences of opinion and suggested treatments could arise.
I would say you’re going to be often eating into your savings and there’ll always be something to pay for when it’s a chronic condition that is with you for the rest of your days as even if controlled and behaving, you’ll still need meds and rheumy appointments. If it is a need to go private for a specific reason such as a fast scan or something that you can’t wait for (ie replacement joints) then I’d keep with the NHS. Can you ask your GP for help to try find another rheumy and stay NHS for rheumatology? I realise logistics could be an issue too. Also difficult to see anyone ftf in these times. Good luck and hope this has made some sense! xx
Hi Neonkittie - that all sounds really complicated and expensive.
At the moment I just want to have the MSUS which I was told by the NHS consultant was not available at the moment because of Covid. She said she would send me for one otherwise but had no idea when they would be available.
When I was first diagnosed in March last year, I was very surprised because I was sure that all my pains were down to OA type illness and only in a few joints. The tipping point had been severe pain in my sacroiliac joint and the whole of my right leg. I was basically told that the inflammation seen in my wrists (where there had been no pain) indicated that any other pains would also be inflammatory in cause.
I was bemused but did as I was told, did my exercises, took the hyroxyc. but as time went on I started to develop symptoms that were more RA like and this is what I don't understand about my consultation the other day: all my symptoms have started and gathered pace since being on the meds. As my bloods were not showing anything and I didn't have symptoms I did ask at the time how my disease would be monitored and the answer was through the meds and whether or not they were 'working' but I explained I couldn't know as I didn't have any symptoms🙄 . I was told that I would have another MSUS at some point but now told I can't.
So I am hoping that some more scans will show if what inflammation there was a year ago is the same, better or hopefully not worse. I'm also hoping that my worst joints can be scanned for actual damage because I have a feeling that my right shoulder is not in great shape inside regardless of what is causing it I think I need to take steps. All I have been offered through the GP regarding individual joints is more x-rays which he admitted were not the best tool.
Widespread OA with or without RD worries me the most as it seems nothing can really be done to prevent damage in sever cases as she implied mine is, but I'm confident a GP can deal with that. as I understand it just pain killers and exercises then as she put it: surgery.
You just need to say you’re self funding. It will be all over the forms they get you to register with anyway.
Once a consultant knows you are self funding, they refer back to the NHS for anything additional.
Don’t worry!!
Hi, Yes it could be complicated going between private and NHS for any length of time was what I was meaning, but agree to get diagnosed and quickly many people want to do the private route first and I did. My case was quite straightforward. Once diagnosed swapped to NHS.
I’m sorry your bloods don’t show anything conclusive and therefore able to get an answer to move forward as such and that you are not easy to diagnose at the moment. Even more so upsetting .. frustrating .. not getting the ultrasounds you need. 😒 I hope you can see there isn’t much deterioration when comparing the original scan to one you hopefully will have soon. 🤞🏻
Has Hydroxy reduced blood inflammation levels? Or weren’t you showing high ESR/CRP as it’s not RA. Sorry if I missed this on an earlier post as I’m not seeing every one’s messages as this phone and connection are bonkers at the mo.
Gosh you need the ultrasounds and to compare damage and then you’ve some proof of any deterioration or not (hoping not) to go forward and manage it as you say. I hope it isn’t too long before you can go for this and yes I would want to hurry it. I got shoulder damage OA early on from my RA.
Hoping you get that appointment very soon for the US and sending you my best wishes. xx
Have you spoken to the private healthcare company to ask how the financial side works. I used my husband’s companies cover to get diagnosed then transferred to NHS ( same rheumatologist) particularly as I was moving onto biologics and private cover ( certainly mine) won’t cover medication for chronic conditions. I recall our policy had a £250 annual excess charge for each claim and it helps to know when your renewal date is as if you are mid private treatment you will need to pay another excess payment at the renewal. Some policies have claims limits or they restrict the number of , say, physio visits or scans etc. A call to the provider and they can explain what plan level you are on. I had to settle the private bills with the hospital then claim the money back from the insurer so be aware you need the funds available up front. Each consult was £150 to £200 ( first one the most as longer) and X-rays in the hundreds and blood tests add up too so not cheap even to just get diagnosed but for me it was invaluable but if you can get it all sorted in the renewal year then it only costs you your excess amount ( mine was £250). The insurer covers your hospital parking bills too! Just get informed on how the process works so you don’t get any surprises.
She/he will send a copy of diagnosis/treatment to your GP and drug recommendations can be prescribed by him/her on NHS.
You've been given some really useful information from many people here and hope it helps. One thing that I would suggest you ensure the private consultant or your NHS consultant/nurse does ASAP is a DAS (Disease Activity Score) assessment. Knowing your DAS is very important as it is a key deciding factor for what medications you should be considered for relating to how severe your disease is. To find out more about the important role DAS plays in your treatment decisions visit nras.org.uk/resource/the-da...
good luck and remember you can always ask to see another NHS rheumatologist if you feel you've not got the best relationship with your current one. not easy I know but may be worth considering.
Thank you Clare - during my appointment on Tuesday (the first since diagnosis a year ago) the consultant did not examine me or ask a single question about anything or pain. It really was a total waste of time in every sense.
It's been very much on my mind since and I am wondering if she didn't look back at her notes from the appointment when she diagnosed me. If she had, she would have seen that I didn't have typical symptoms; they have all developed over the last year since then. She said I was right to stop the medication if there was no 'improvement ' in symptoms, but I never really had them back then. My diagnosis was made on the results of MSUS which showed synovitis/inflammation and on the strength of that she diagnosed me with Undifferentiated Inflammatory Arthritis and put on hydroxyc. As symptoms gathered pace I called the nurse line as instructed and mtx was added. Symptoms continued to get worse and more frequent.
I'm completely mystified by the appointment but the biggest problem is that MSUS is not available yet the only way of monitoring what is going on with the disease. Hence the private appointment.
I have a few changes in some joints that I had wanted to show her but she didn't ask and just said if MTX and hydroxyc. weren't 'working' it was right that I should stop taking them. That was it.
So I have no idea of what my DAS is.
Hi. I did exactly the same. Found the consultant I wanted but would have had to wait 3-4 months for an NHS appointment with him. So I initially consulted him privately for my first appointment (1 week!!) and switched immediately to NHS for which he booked me into an NHS clinic the following week to have tests and start treatment. It didn’t feel right to be queue jumping but you have to look out for yourself sometimes and at that point I just needed the pain to stop. I would do it again in a heartbeat if circumstances were the same. Good luck with your appointment.
Hi Brychni, not sure if you saw my reply to one of your earlier posts where you asked about how private prescriptions work but just wanted to let you know that I contacted my consultant Tuesday (privately) explaining how the pain was getting worse and how sick, giddy & tired I felt, he rang me up and said to stop the MTX and he'd look at alternative meds, when I asked him what was he thinking he said possibly leflunomide.
Whilst I don't think MTX is helping, I've read on this site how people have been prescribed with triple therapy such as MTX, Hydroxy & Leflunomide and how using triple therapy has helped.
I e-mailed the consultant again last night to ask if this is something that could possibly help and just had a reply to say these options will be discussed at my appointment next week.
Sorry it's not much help to you with the rheumy you saw but wanted you to know there are some out there that do look at alternative meds.
Good luck x
In some ways, coming off the MTX makes it easier to see what’s actually working. So if you start LEF by itself and that works, great - and you have fewer drugs and side effects to deal with - compared to a combo of LEF and MTX.
They can always add a combo later on if the single DMARD therapy doesn’t work. The triple therapy is a good idea, once other options have been explored. And it’s definitely effective for some people.
But going straight to that is like 0-60mph instantly. Sometimes a slower journey is better for your overall health. If that makes sense 
x
Yes I understand what you mean but I’m already on hydroxychloroquine & etoricoxib, I’m worried about stopping the MTX as back in April I stopped the etoricoxib, within a few days the pain started getting worse, in November when I started MTX the consultant said to stop the hydroxychloroquine, again within a couple of days the pain went through the roof, I was prescribed prednisolone, stronger cocodamol & amitryptaline, the consultant said to retake the hydroxychloroquine, whilst I’m not in as much pain as I was in December, there’s been no improvement & I’m getting pain in other areas now as well as the original pain sites getting worse. I’m just concerned that stopping the MTX I’ll go down hill further x
Hi G, your reply is interesting because I had thought that something extra would be added and tbh I was readying myself to say I wasn't keen. So, doubly surprised by how the appointment went.
I'm beginning to think that the consultant hadn't read her own diagnosis notes. Otherwise she would have known that at the time I didn't have classic symptoms and they have developed in the year since then. So without a scan there's no way of monitoring the disease.
Will you let us know how your appointment goes? How do you feel about extra meds? Fingers crossed x
That’s what I was thinking, why suddenly stop you taking anything especially as it seems she couldn’t have read her notes.
Yes definitely let you know how it goes.
To be honest, whilst I hate taking all the pills, I also hate the thought of being in pain so much & not being able to cuddle my baby granddaughter to sleep, I do but jeez I suffer so much afterwards, I’m also finding it difficult to potter round the garden which I love, I work at a computer all day which is also aggravating the pain in my arms, wrist, forearm & hamstring & whilst I’d be quite happy to pack in work (which would be difficult as it’s a family business of which I’m one of the directors) the pain is just impacting on all areas of my life.
Wish there was a miracle cure as I expect we all do. X
Glad I came across this. I am bewildered at the moment too so need to read through the replies. Hope you are finding your way..I shall no doubt find out when I have had a look later on. Please don't'sell a kidney' 😊. I am self funding too. X
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