Was it worth going private?

As you know I was advised by my GP to go private for my rheumy appointment as the waiting lists were so long. I waited four weeks for my private appointment which went very well and I was advised that I would be transferred to the nhs list for further tests. Well that was a couple of weeks ago so I phoned to find out how long I'll be waiting for an appoitment or blood test forms. The answer, 8 to 10 weeks! I am honestly shocked although I really should be beyond shocking by now. This is just the same as being a new Nhs referral. Once again to the bottom of the pile. What I wonder was the point of my GP suggesting a private appointment? I'm still only on ibuprofen and feel very anxious about the delay in treatment. I Feel extremely fed up as being out of work and having this hanging over my head for almost a year is taking it's toll. I really have no fight left in me. What does a person have to do to get a diagnosis?

[Ella32]

Hi

Please don't give up the fight. I've been at this for 17yrs and at time i too have felt like giving up, but one thing i have learnt about this ba***rd illness is that you never know what is just round the corner, and just sometimes what is waiting can be just what you need

I know it can be frustrating with doctors and wait lists etc... but rest assured that once you are in their 'system' you wont have to wait that long again for tests, follow ups etc..

I ALWAYS do excatly what your GP suggested when i see a new consultant. Going privately for the 1st appointment does seem to get you further with a better outcome (sadly). If you don't mind me asking, which area of the UK are you in? Just possible we may be in similar areas and i can give you a few numbers ( although odds are we're not lol).

Keep going and you'll get there.

Ella x

[Hidden]

Hi Ella, I'm from Wirral in the north west. I don't blame the rheumatologists as I know there are only 2 at my local hospital. I really think the health authority should be looking seriously at provision though. x

[Hidden]

Yes there's a huge gap between NICE guidelines and what's on the ground in reality for most people. The importance of early and diagnosis treatment is stressed over and over again and yet your experience shows the exact opposite of the guidlines. I think there must be a mechanism where you can complain to your health authority and tell them of your experience. Go and see your MP and get things moving higher up the chain Paula - that's what I would have done if I hadn't had satisfaction from the rheumy at my second consultation. Heck I'm feeling cross enough for me and my situation let alone for you!

And if you saw this guy privately surely you have his secretary's number and can phone for the results through the private system that you've paid for? I mean if you had to pay the results of the tests and the diagnosis are what you paid for so please be a demanding consumer on that front at least. Otherwise, as you say, what was the point apart from getting a nice sympathetic consultant - which will count for a lot in the long term perhaps but doesn't mean much right now? Lots of hugs and empowerment to go and find out what that rheumy you paid has got to say for himself. TTx

[sciqueen]

Hi

I agree with Ella, once you are in the system, it comes thick and fast. Just persevere, it should get better.

I understand your frustrations and most authority see you within guidelines. I hope your end up with a good rheumy team to make up for your poor initial start.

Sci x

[Hidden in reply to sciqueen]

Thanks Sci, I'm sure you're right and hopefully will get some answers soon x

[Hidden]

I see what you're saying about complaining Tilda but I feel worried about doing so in case I offend the rheumatology team. If my results come back positive I could be spending a lot of time in their care and the last thing I want is to feel uncomfortable. It's so frustrating but I imagine I'm not alone in feeling this way. I can't get any results by phone as the rheumy wants the blood tests and xrays in order to make a diagnosis. Luckily I'm not in the severe pain I was in around Christmas but the pain is affecting more joints now. My wrists are very sore and my right hand looks wider than it used to also my little finger is now sticking out. My toes feel very similar to my fingers, like they've been fractured. I don't need to be an expert to know that carpal tunnel doesn't cause painful toes. I'll have to do some reading up and decide what to do. I've never felt so helpless before. Had my hair cut and highlighted today. I usually wear it straight but as I'm unable to manage the blow drying now I've gone back to my natural curl. Am also happy to say I've now lost a total of 31lb and feel much better for it. x

[Judi]

Can your GP give you some stronger pain killers while you are waiting to see your rheumy team? If you could alleviate some of the pain waiting might not be so bad.

I was diagnosed with RA 20 years ago and I had to wait 3 months before I saw a rheumy consultant even then so I dont think getting into the system has improved at all.

Judi

[Hidden]

I think I'll make an appointment to see them today Judi. After telling them the Naproxen gave me Oedema the Dr just left me to it. Its not good enough really. I think they should have at least tried to hurry my appointment through.

[Treesha]

Hi paulywoo I can't understand it either. I originally saw consulltant privately ( hubbys work paid ) the appoints were quick bloods xrays mri scans everything. As soon as I was diagnosed my consultant transferred me to his nhs clinic saying it would be better with everything available in the same hospital scans and such things. I CAN'T EVEN GET A FOLLOW UP APPT!!!! I will have to ring again today. I spoke to his secretary last week who promised to sort it out and I am still waiting. I am in liverpool not too far from you. Good luck with getting sorted. Take care. Xxxxx

[Hidden in reply to Treesha]

Thanks Treesha. I hope you get your appointment soon too. It was good that your husbands work paid for your private appointment. I do wonder what's going on in this region with rheumatology appointments. I've at least found strengths I didn't know I had instead of getting depressed about it all. I'm sure I could get anti depressants in the blink of an eye though if that was what I wanted. There's nothing like a good dose of medication to cover up the problem. x

[Hidden]

Paula I completely understand the feeling of not wanting to complain or bite the hand that may have to feed you - living in a close knit community like this with only an infrequent rheumy service means I know exactly how you must feel about complaining. Yes I think you need to go back to your GP and have a serious talk with him or her about how to manage while you wait. From everything you are describing I don't really see how you can have anything other than RA to be honest - in fact yours sounds more clearly RA-like than mine but then I am on MTX now so I'm hoping that's why.

My little finger on my right hand has journeyed off track now so much that I can't gather it in at all and it frequently aches badly in that part of my hand - and yet GP seemed to think this wasn't any kind of drifting because I haven't yet got swan neck deformities that show. It's so hard when we are so aware of our bodies changing quite fast but when you show a doctor they just come out with stuff that shows they just don't want to know? I think that when they dismiss us re your oedema from Naproxen (I'm exactly the same) it's just because they are running out of ideas and hope that by burying their heads it will just disappear and you will give up and so will the RA somehow?

I've given up on the idea of seeing head physio or doctors now and just keep focusing on losing weight and keeping as fit as I can do until all the aches and pains either disappear or show themselves again so I have something clear to show others or my bloods are either spectacularly raised or normal again. Suggest you research pain medicines and steroids etc and work out what you think would suit you best while you wait and then tell the GP what you want them to prescribe for you. Taking control of our weight and of our medicines is the best thing we can both do for the time being I believe - if no-one else helps us then we have to do our best under the circs.

Shocked by your and Treesha's experiences - I thought it was just island life that was causing the delays and stuff for me. Really Judi - 3 months would be no wait for us at all - I waited four months for first consultation and that was inconclusive so I had to wait another 5 months for a diagnosis and that's better than what Paula and Treesha are getting! TTx

[Hidden]

You're right Tilda, we have to take control of whatever we can. I eat a clean diet now, drink little alcohol, take long walks and swim 3 times a week. I did try an exercise Dvd but realised it was a bit too much when she tried to make me do press ups (I don't think so!) and jumping jacks. I hope you get your new rheumy appointment soon and look forward to the day we can come on here and say were feeling better. I think a cure is hoping for a bit much but that would be nice too

Best of health

Paula x

[LavendarLady]

Paula, has your GP not done any blood tests at all? They will show up disease activity. My blood tests are done each month at my GP surgery although the first ones were done in hospital. I saw my RA consultant privately initially and had fantastic treatment. I was in hospital within 3 days of seeing him and receiving treatment privately. Being on BUPA for years helped.

I still see him privately for consultations and although I cannot claim it back now from the insurers as now classed as chronic, it is worth paying him £130 every 3 months + whatever injections he does. And I am on a limited income now.

My GP did say that if I had been left to the NHS I would have waited weeks if not months for something to be done or left languishing in hospital with little treatment. She agreed I had received wonderful treatment, far better than I would have received with the NHS. I do see the Rheumy nurses on the NHS every 6 months. My GP doesn't think much of the NHS!

I do bite the hand that feeds me girls - As I have said before, we pay their wages and I feel we are entitled to some consideration as a result. I have no problem with creating a fuss when needed but I appreciate it can be difficult for others to do the same.

Suggest you see your GP again and give him a kick up the backside (metaphorically speaking) - he should be able to put you onto better painkillers or arrange a steroid injection to help you along. Paracetemol taken with nurofen is extremely effective in the short term.

Is it possible you could see your consultant again privately to get you onto the various drugs etc we need? Might be worth considering. I bet you would get an appt within a couple of weeks if you did.

Best wishes. LavendarLady x

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I know what you mean about biting the hand that feeds LL but it is very hard to do if it's for ourselves because we all feel more vulnerable when in consultations.

I usually find that I'm empowered to be more assertive if I know I've done everything I can to help myself, as Paula is obviously doing. I think some people just expect doctors to be miracle workers because they are paid so much but ultimately they are paid a lot because it takes a long time to get to be a doctor and it can't be easy when a lot of patients are not taking care of themselves and are just sitting there like victims saying "oh help me help me" even though they are obviously not looking after themselves at all. I can see that I would get a degree of compassion fatigue in those circs.

But you are right - doctors need patients who engage and are proactive about their own health and who also expect a lot from them too. And as my OH pointed out - if we always take the lead then the medics can get complacent about us if we find we can't for once - they think because we aren't telling them what to do and aren't moaning we must be fine so it's a balancing act but generally speaking I like your approach and think it works best. My mum was on the GMC as a lay member and she had a very healthy scepticism about doctors and was always reminding me how much they earn too! TTx

[rheumatoidymummy]

My husband fell into this trap - some PCT's arrange for GP's to refer to private hospital consultants when there is a long wait to be seen in an NHS hospital - the reason....? So that they can say they met the 'seen by a consultant in so many weeks from GP referral' target (I can't remember the number, might be 12 weeks) - the private hospital doesn't carry out the treatment though - it's back to the NHS for that - it's purely so that the target for how long it takes for you to be seen is met.

I understand how you must feel - my husband was crushingly disappointed as he was virtually paralysed with the pain from a prolapsed disc. I'm afraid you've been given hope and then dumped on by the bureaucracy of the NHS.

[emma58]

arh feel so sorry for you.. am in the same boat why dose it all take sooooooo long. cant you get some co cordamal ectra from your doctor just to help the pain. would love to tell you how to get on the fast track but i dont know myself . chin up take care xxx