I've decided that enough is enough and to seek out a private rheumatologist.
Will I still need a GP referral in order to get an appointment with the rheumatologist?
My GP is unhelpful with regards to my ever growing Lupus symptoms, as is the dermatologist who I've just seen so I'm wary that they will not agree to the referral. Changing my practice is out of the question.
Hello poppet,
Yes you will still have to have a referral letter to the new consultant, its the way it all works,
but you will have the letter in your hand, not waiting to be sent. Try to choose a good rheumatologist, ask around in local lupus groups. Then you can contact the consultants secretary via your local hospital.
Hope you get some help and treatment, best wishes.
Thank you. I've already decided on the rheumatologist. Do I need to inform my GP of his details or is it best not to?
What If my GP refuses to refer me?
They aren't always helpful and it's like getting blood out of a stone at times just to run basic blood tests.
hi hun
you can self refer to the London Lupus and Rheumatology centre, they are excellent.
you ring up and book an appointment, info they send includes fees etc. Ideally they will want your GP details and they will inform the gp of a plan of how to continue your treatment depending on your symptoms and test results. Dr K is very good,
hope that helps T
Thank you. I wish I could but London is over 200 miles away and I don't drive unfortunately, or have anyone willing to take me.
Is it only Lupus Centres that you can self-refer to?
Could you tell me on the costs of this please?
Do you know the costs of this please thank you
Hi. I have self referred to several private specialists in the past. It means they won't have access to your medical records but I have found it is sometimes quicker and easier to book directly. If you do so it is helpful to take as much info as possible e.g. blood results as they won't have access to these. Good luck.
Thanks. I have a number of previous blood tests in my possession that reveal red flags that weren't acted upon (no surprise) but I have requested a copy of all of them from the GP (will take a few weeks).
If a private specialist diagnoses lupus and recommends treatment, are the NHS still obliged to honour this?
When you see a rheumatologist privately he will issue Private prescriptions which you have to pay for....he cannot issue NHS prescriptions.If your GP has referred you, the Consultant will report back to him/her & you might get an NHS prescription under a shared care agreement, but that can take time.
A previous GP I went to would not sign the agreement for quite a while & I had to pay for the drugs I needed.....but it was worth it as they were what I needed. If you do find yourself in that situation do check with a few pharmacies......costs vary quite a bit between pharmacies.
These days it is a very considered decision to use a Private Consultant if you are self paying. If the doctor works from a private hospital you also have to pay for all your blood tests (& he will need a new set of bloods) at the hospital & some are very costly....,plus the hospital make a charge for all sorts of things......an MRI is upwards of £500.
I broke my arm& saw an orthopaedic surgeon privately & the hospital charge was more than the doctor's fee, so do investigate thoroughly before you commit. The private doctor's secretary will have a list of all these charges.
Your GP will refer you to a different rheumatologist on the NHS if you are dissatisfied with your present Consultant.
I have no faith in NHS rheumatologists due to previous experience.
I'm sorry you have been so unlucky with your experience of rheumatologists.
I was first diagnosed privately in 1999 by a rheumatology professor (now sadly retired ) who then referred me to a rheumatologist who had a special interest in my type of RD.
Since then I have seen both NHS & private doctors & I can honestly say the NHS rheumatologists have been equally as helpful as the private practitioners.....after all most NHS Consultant Rheumatologist are also in Private Practice. Unfortunately budget constraints in the NHS mean they often cannot offer the treatment of first choice unless you see them privately & I'm afraid that can be very expensive I
I'm doomed if I can't get a diagnosis. 1999 is almost 20 years ago so things are dramatically different in terms of efficiency of the NHS as a whole.
It's very sad how much our precious NHS has been destroyed.
From my experience consultants work for NHS and perhaps do 1 or 2 days at a private clinic so you may be paying for a private consultation with a consultant you could see on NHS. I have seen several privately and it has been purely for the fact you can get to see them much quicker than waiting for NHS referral.
I have a specific consultant in mind who only does private work now. I doubt I'll even be alive if I've got to wait for an NHS rheumatologist appt. I'm a single parent to a young autistic girl - I don't have the luxury of wasting any more of either her or my own life.
If you have private medical insurance you will definitely need a referferal to see a Rheumatologist Privately. Insurers will only pay if your GP has referred you.
If you intend paying yourself, you need to decide which rheumatologist you want to see & telephone the secretary who deals with his private practice.
She will ask what you need & will tell you how much a first private consultation will cost. Fees are at different levels in different parts of the country.....fees in London being considerably higher.
Some doctors will still want a referral from your GP.
You won’t necessarily need a referral from your GP even if the specialist initially asks for one. For example Spire asks for one as standard, but quickly dropped it after I said that my GP was proving obstructive (not a lupus matter).
I’d put it in writing to your GP that you require them to give you a referral and that if they won’t give you one then can you please have:- ....
a full copy of all your records. Some time in May this becomes free of charge whereas currently they can ask for administration charges between approx £10-40.
If the specialist suggests further tests/treatments ask them to write their recommendations to your GP. They will usually do this as standard. What you don’t want is to pay for all these tests privately as that is the point where things can get really pricey.
I had a lot of problems when I saw a rheumatologist privately, the communication was poor with the aGP, and then the GP refused to prescribe meds, and I would need to pay for the prescriptions privately which were hugely expensive. I went back to the NHS.
Yes u need a referral from gp. Just be aware tho u may still see the same dr as u would see on the nhs but just quicker! Some will be nice and then just keep seeing u on their nhs list and not make you keep paying privately!
Can u just see a different gp?
U have the right to go anywhere so have a look and ask for a specific consultant, where abouts do u live people may be able to help recommend someone if u don’t have any ideas already.
I plan on seeing Dr Bucknall at the Nuffield in Chester
Ok I’ve not seen anyone in that area so not aware of them, I’m in N Yorks
I found who I wanted to see in a hospital about 90 mins away and told the gp that’s who I wanted referring to as he was alupus specialist. I had already been diagnosed for a few yrs but had moved to a different area and found the local rheum useless so asked to be referred elsewhere.
I think I just got referred on nhs not private
I can't get a diagnosis because the consultants I've seen refuse to do their job properly. Seeing another consultant within the NHS simply would not work as their views will be coloured by the previous rheumatologists.
This is my repeated experience. They don't even examine blood tests properly.
There are numerous red flags on many blood tests over the years that have simply not been acted upon.
Not all rheumatologists work on the NHS. The one I'm seeking the services of now only does private work.
My own experience of NHS rheumatologists is that they're not inclined to diagnose Lupus. I have my own theory on this but won't share it as I'll risk having my post removed.
I've been told by others that if you get a diagnosis via a private rheumatologist, they will recommend a treatment plan that will be conducted via the NHS.
It's this that I'm ascertaining is correct information.
I think maybe you have been unfortunate in seeing rheumatologists who do not have a particular interest in Lupus. If the doctor you mentioned wanting to see at a Nuffield Hospital really does not have an NHS practice.....which is most unusual - as the majority of private patients seein their consultant using private medical insurance & unless the rules have changed these companies will only accept to pay for consultations for doctors who do work & are registered in the NHS.
So do check that out....you don't want to pay hundreds of pounds in the private sector in the hope of being transferred to get what the private doctor recommends, only to find it is not available on the NHS.
It is a minefield I'm afraid & I know too well when you feel so unwell it is really an uphill battle to get to the right doctor.
He worked for the NHS for decades oreviously
I’d hope then that he will be kind enough to see u initially and do any relevant tests and then maybe suggest an nhs dr to transfer to that he’d recommend so that u aren’t having to pay privately forever as I guess it can be pretty expensive??!! Esp if u do get diagnosed and need regular appointments and treatment.
But as long as u get sorted, u get to the point of past caring how u get there!
Ah right ok, yes there will be some that just do private clinics but some do both so I thought if u were wanting to avoid anyone in particular to be aware of a gp referral to nobody specific! If u see what I mean?!
But u know who u want so won’t be relevant.
I had an nhs rheum after already being diagnosed and under the care of 3 previous rheum in different locations who said there’s nothing wrong! So then asked to be referred to this lupus specialist who has been treating me for about 6 yrs I see him every 3 months
Hope u get sorted
On My NHS appointment letter these days it says you will see Dr X "or one of his team" which can mean anything from the actual Consultant, a Senior Registrar or a Specialist Rheumatology Nurse.
I am quite happy to see the nurse as she always seems to have more time. She can change drugs & dosages & I feel she is more in tune with the actual person & how they are dealing with their particular RD. The Consultants seem more concerned with drugs & bloods & don't seem to understand how each patient is dealing with their illness in real life!
Yes I think most teams do say cons or one of their team, apart from mine! He’s a bit of a workaholic and sees everyone himself! Which does sometimes mean u can be waiting 2 hrs past ur app time (tho this has improved lately) for him, but u know that when u get in there he’s in no rush and takes his time with u.
He’s even been known to ring me on a Sunday evening before to discuss meds!!
He can sometimes take a little time to get ur clinic letters out tho at times but I think it’s just that he literally takes everything on himself!
It’s good tho because he knows u and all about u.
The only time u may see someone else is joint inj clinic where I hadabout 3 drs together!
No, just find one in your area that deals with Lupus and gather all your medical records relating to Lupus. Book it direct. Also you don’t have to tell your GP - your private Rheumy will write a report and send it to GP if you want. The NHS still have to honour your treatment. A lot of us have to resort to private Consultants. My NHS Rheumy told me “you only have arthritis” - I have Lupus and Sjogrens. He was awful. My Dermatologist told me “it is your age” - she had to back track when I was diagnosed, not seen either since. Also you should NOT have to wait weeks for medical records, they are on line and can be printed in seconds. Good luck
They said it would take weeks to locate them all. I'm referring to blood tests going back two decades. This is how long I've been falling apart.
But they still claim it's only Fibromyalgia...
How to baffle a rheumatologist: 
10 Drs before a referral 
Neurology Telephone Appointment
