I would really appreciate some advice. I am currently waiting for a rheumatology referral and have been told the waiting list is currently 16 weeks.
I'm grateful for the GP referring me straight away but had hoped to see a consultant within 6 weeks or so.
My query is do I wait or speed things up by going private? In anyone else's experience is it easy enough to go back to NHS after the initial private consultations?
For a bit of background info, I have a long history of joint pain, since I was a teenager, with no clear diagnosis. I'm now 30 and my symptoms have been worse over the past 9 months, joint flare ups lasting longer and generally feeling more unwell, plus new symptoms of hot flushes. Last week I had my first butterfly rash effecting the face, chest and hands. Thankfully my face and chest have settled but hands getting worse and more uncomfortable. Since then I have noticed photosensitivity, with the back of my neck flaring up like sunburn after a short period outside.
Any advice would be greatly appreciated! Thank you x
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Really hope you get the advice you are seeking. If i could afford to go private i would go down that route myself personally, i dont think it should prevent you resuming back to the NHS im sure you would be able to take your consultation and test results from the private doctor back to your GP after.
Hello. I got diagnosed back in October 2013. I had numerous symptoms. Bloods were positive. GP referred me to NHS Rheumy - that appt wasn't until end of March 2014 - nearly 5 months!!! We were lucky enough to have private health care and they agreed one appointment. We saw a different Rheumy - had to travel an hour from home but it was worth it. Appt was 1/2 an hour. Diagnosis confirmed as SCLE and a prescription in my hand for 2 x 200mg hydroxychloroquine per day. Started meds the same day. I often wonder how ill I would have become if I'd had to wait the 5 months until NHS appt. I was losing hair fast too and that scared me. Plus all the other symptoms. I was so low. We saw the invoice for private appt. it was £190. You can google local private hospitals and research rheumatology and lupus specialists. Lupus UK might be able to recommend someone too. Worth it if you can afford it. Best wishes.
I should have said, I took my NHS blood test results with me. Just had a urine test there. So invoice didn't include any bloods or X-rays etc. More thorough investigations were completed on the NHS in 2014.
You have to also bear in mind that paying to go privately for a complex diagnosis is not just the cost of the consultation with the doctor - there will probably be a lot of blood tests to be done, some of which cannot be ordered by your GP. There may be imaging (scans) to be done to rule other things out or in. Blood tests are pretty pricey when you have to pay for them yourself - imaging can costs hundreds if not thousands of pounds.
Not all rheumatologists do private work, nor does it mean they are better (or more helpful/empathetic) for being private. Some top specialists in certain areas of medicine don't do private work at all. Some doctors doing private work will happily transfer you to their private list if they feel it is appropriate - others won't and there may still be a problem getting the transfer to work smoothly through the NHS system.
I realise it is hard to look at a 4 month delay now you have got this far - but you would be seen earlier if it were life-threatening (if that is any comfort). The delay is partly due to a shortage of rheumatologists overall, but part is to accommodate a new patient in the clinic with an early appointment on the day which leaves time for a longer consultation before sending the patient for certain tests which can sometimes be done on the day and the specialist see the results immediately.
It is a complex decision - and partly down to where you live and the private options available to you.
It's not so much that I can afford private healthcare, just I could make it a priority if need be, hence the dilemma over what to do. PMRpro, the potentially spiralling costs of various tests etc is a big concern, I appreciate the insight into what I might expect to happen. On the other hand another concern as Wendy39 pointed out is, where will I be by the time the appointment comes around?
I think I will have to wait and see for now and maybe look further into private if the process is still too slow and symptoms are ongoing.
If you feel your health is deteriorating quickly go back to your GP - who can, if necessary, seek an emergency consultation. Urgent means a few weeks sooner than routine - but the decisions tend to be made on your status the day you are seen. IF you get worse - that changes, but when you have had something for months or even years before seeking help - you are likely to have to wait as it doesn't appear serious enough to be an emergency.
Even people with private cover end up being sent back to the NHS! Very few healthcare policies will cover chronic illness - and if they do, the renewal cost rises steeply. That is what the UK will face if the NHS collapses. I know many people in the US who face horrendous co-pays because they are chronically ill. I'd keep my cash for later. Just in case!
One thing that is worth doing is contacting the rheumatologists secretary on a regular basis to see if there have been any cancellations and whether they can see you sooner as a result. I know many people who have done this in the past and significantly reduced the wait for their appointment.
If you'd like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Thank you for the advice, when I have the name of the rheumatologist I will try that. At the moment all I have is a letter telling me there are no appointments!
I will certainly take a look at your info, thank you very much.
I personally would not risk going to just any Rheumy. I went to see Dr Lanham and Prof Hughes at London Bridge Lupus Hospital...I HATE doctors but it was the most positive medical experience I have ever had. I feel it so important in the outset to get to the best and they were SO SO Kind I cant speak highly enough of them. call them and they may get you in next week
I saw Dr Lanham who now sees Prof Hughes patients but prof huhes still popped in to the consult. I got in within days - Thankfully covered by health insurance though. The consults with Dr Lanham are not expensive but blood tests are so get your GP to do those, they don't make you have them at the clinic they give you the option of getting these done before your consultation and if you want a list of what they need I can type that out.
Still have to say you wont get better and even if its just your first consult its worth paying for
I paid privately for initial consultations for both cardiology and rheumatology. In both cases, the consultant I saw was happy to accept me onto his NHS caseload for further management.
The way this worked was
1. I was referred to my local NHS rheumatology and cardiology services by my GP
2. I asked around to find the consultant in these services with the best reputation.
3. I rang to check their NHS waiting times
4. Since this was about 6 months in both cases, I rang to find out if they had private practices. Both did, with waiting times of about a week.
5. They were both happy to use the same referral that my GP had already sent to the NHS
6. I saw them privately (it cost about £200 each). Both of them started me on a course of treatment, sent a letter to my GP, and transferred me onto their NHS caseload for further appointments.
Because of the overlap in their private and NHS roles, the transition was pretty seamless from my point of view - test results were immediately available and no duplicate investigations had to be done.
I think there are ethical issues here, but frankly, as a patient in a dire situation - as I was - I didn't feel I could afford to worry about that.
Thank you, that would be my ideal circumstance! There is a specialist in my area, I think I should make some enquiries to see if she does private work. Thanks for Sharing your experience!
If you do decide to wait, I suggest you take pictures of your rashes and keep a diary of your symptoms. This will all help with a diagnosis. It is s***s law that there will be nothing to see on the day of the appointment.
Thank you, I have taken lots of pictures, if I wait for the referral I certainly hope I'm not still feeing as I do now so hopefully the consultant will appreciate being able to see pictures of the rashes at their worst.
Hi hun I'm due to see rheumatologist in may, I had been waiting 6months, my daughter the same, not sure about if you would be referred again if went private xx
You don't need to be referred again, or at least I wasn't. I was put on the NHS waiting list and saw the private one in the meantime. I was never re-referred and I didn't have to go to the back of the queue. But, I live in Wales and not sure if this is the case in England and Scotland.
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