Diagnosis waiting list

[Fernlife]

Hi there, I’m looking for advice around waiting lists. I’ve been referred to rheumatology due to persistent symptoms associated with autoimmune diseases including the butterfly rash and raynauds. Unfortunately it’s a 6.5 month waiting list. Has anyone decided to go private for diagnosis? If so, was it helpful? And could care be transferred back to the NHS?

[Treetop33]

Yes, I went to the London Lupus Centre, got a letter and a prescription for hydroxychloroquine and steroids (which I then got the GP to issue), and then waited for an NHS doctor.

[Fernlife in reply to Treetop33]

Thanks for the recommendation!

[StriatedCaracara]

Some departments are better than others (how many hours they have spent with lupus patients being really important - some seeing patients all week, others only a handful).

Is your appointment at an NHS Lupus Centre of Excellence

...or elsewhere?

[Fernlife in reply to StriatedCaracara]

Thanks so much, I’ll bear that in mind! I live in Scotland so I don’t think I can get a referral to the NHS centre for excellence. It is a referral to general rheumatology, which seemed to be the best thing that they could do.

[LottieLou96 in reply to Fernlife]

I'm also living in Scotland and it took some time for an appointment down in Edinburgh, but they at least seem to listen and act. Albeit their rheumatology advice helpline is not great. I live up north Scotland now, so for sale of time aren't currently transferring till I'm stable. Private centres are always tempting if one can afford it.

BW

Lottie

[Broseley]

My hubby was in a similar situation. He was referred back in July for tests for lupus. We heard nothing so in September I phoned the hospital and was told there was a 18 month wait while they caught up from covid. So he went private, via work, but Vitality were so rubbish it took till December to see our chosen specialist. He had a raft of tests, one of which led to an urgent referral to a respiratory department on the NHS as he reached the limit on his insurance. They had found a nodule on his lung. So it's now March and we are still waiting. The GP surgery have lost the results twice. We struggle to get through on the phone and it seems when they ring us the phone goes dead (only happens with them). Now still chasing, phoning every day to be told the receptionist who's dealing with his case is off work... Even the private consultant tried to ring them as she was horrified when she heard. But she couldn't get through.So my advice is yes, go private and if possible, all the way. The NHS is very sick!!!

[jnnfr]

I'm already diagnosed but I've been waiting over a year for an appointment. Got referred back in Feb 2021.

[dg70]

If you want quick attention then private might the way to go. I go privately once every six months to a rheumatologist under the hospital's own private health unit in Swindon. I have also been to several BMI healthcare hospitals which are fine. It's all the same doctors as on the nhs generally so transferring back to the same consultant under nhs is not a problem. I did try and transfer back to the nhs recently which was fine but the wait was many months so I went back to private. Plus with covid I didn't want to be in a cramped waiting room with loads of others. Takes about a month or two to see a private Rheumatologist. Rough cost £150-£200 per half hour, sometimes an hour for that price. Bloods can be done with the GP if the Rheumatologist requests them. Private lab fees are crazy prices - can be over £1000+ for full blood work. CT and MRI about £500. You get an unrushed chat generally and a good check up and often treated more like a person and not a number. Just research online what the specialities are for your local Rheumatologists or ring up Rheumatology private secretaries and ask them who best to see for your symptoms and what the initial consultation fee is. You can also ask anyone on this site in Scotland for a name. You will need a GP referral letter though once you've chosen a Rheumatologist but they're happy to do it as they're not paying. It's your money, you decide who to see.

[Fernlife in reply to dg70]

Thank you, that's really helpful.

[BrigidsFire in reply to dg70]

Do you see Dr Carty? Just out of interest. I’m also at Swindon.

[dg70 in reply to BrigidsFire]

I see Dr. Elizabeth Price, Rheumatology - just luck I got her as I only moved here just over a year ago from London and I got referred to her through an Ophthalmologist in Bath as she is the Sjogrens expert for the UK. I see Dr. Rupert Beck in Urology for kidney stones/urinary issues. So far he is the best Urologist I've seen for many years. I'm trying to co-ordinate my care through the one hospital if I can. The good thing about Swindon is that they have their own private care system (at least when covid is over anyway!) which all links in with the NHS rather than being a private care company which doesn't share scans etc. with other providers. If you go in as an emergency this really matters as they have a much fuller medical history to look at. I'm seeing a Dermatologist next month so hopefully that will go well too. Although 3 out of 3 good consultants is hoping a lot. 😆 When money gets tighter I will consider going back to NHS as I will hopefully have a few consultants in place and this is burning a bigger and bigger hole in my purse but how else can you get seen within a reasonable time in a smaller more covid safe environment? Who is Dr. Carty and how good is he/she?

[CecilyParsley]

Hi there. Yes I had an initial private consultation with a local Rheumatologist. I was seen the following week in an NHS clinic for tests. Good luck xx

[Fernlife in reply to CecilyParsley]

Thanks!

[dg70]

No problems, hope you get to see someone soon.

[BrigidsFire]

Care can absolutely be referred back to NHS.

I have private cover through my husband’s work policy. But it doesn’t cover chronic care. My rheumatologist and pulmonologist have both been consistent (after initial consultations) in making sure I’m covered in the NHS. They happen to have a rheumatology clinic that runs side by side with pulmonary clinicians. All on the NHS. Great Western Hospital in Swindon.

Private is good for initial diagnosis if you can afford it (my initial diagnosis was NHS).

I will say that for me, going private was good because I have interstitial lung disease caused by Lupus, and leaving it longer would not have been beneficial.

I think private is good for getting fast tracked. And also it takes some pressure off the NHS 🤷‍♀️