Finding a Rheumatologist in Leeds

[ASC1951]

After a generally healthy life pushing bits of paper around a desk, my body has now got to the point where bits start to break off. As my GP cheerfully puts it, "You must accept an increasing amount of degenerative change"

The latest malfunction is that I'm getting ankle, knee and knuckle pain. My GP reckons it's osteoarthritis and says just keep exercising. I think he might be wrong - I have also started to get muscle and soft tissue pain in my forearms and thighs, which suggests a rheumatic or inflammatory arthritis i.e. potentially treateable and better for being treated sooner rather than later.

I don't expect my GP to be over-concerned. After all, I am still in pretty fair shape and would be perfectly capable of work if I hadn't retired. So -
- how do I find a consultant rheumatologist who knows about a little more than his core expertise and will take me seriously for wanting to carry on cycling and swimming into my late 60s?
- how do I get my body in front of him? I don't mind parting with lumps of my pension to see someone privately. Well, I would prefer the NHS to pay, but not at the cost of making me wait months and months because I am undeniably not an urgent case.

So, what is the procedure here? I don't want to go and throw a hissy fit in the surgery, because the GP may be correct; equally, I'm happy to put my money where my mouth is if that gets me in front of the right expert.

 

[ColinJ]

I agree - GPs and consultants never make mistakes!

I mean, when an elderly woman I know was hit by a car recently, launched into the air and landed in a crumpled heap, obviously the correct explanation for the sudden onset of her back pain was "wear and tear due to old age"! 

Further to that, she was being completely unreasonable in mentioning that she had been quite capable of carrying bags of shopping about, and going on hilly walks up until the day before the accident.

What a terrible old nag - moaning on and on for over two weeks about her 'little problem'. Then when the doctors finally start to take notice, they start doing tests for cancer of the spine, scaring the family witless...

While they wait to receive the terrible news about this fast-growing invasive cancer, the family continue to insist that the back problem is new and they want a proper investigation done.

To shut the family up, and with much tut-tutting, the consultant finally sends the old woman for some detailed scans and x-rays of her spine. Now, granted, the x-rays do show a couple of smashed up vertebrae, but forget about that, a bit of mechanical damage is nothing to worry about when you are suffering from terminal cancer!

Days pass slowly...

Old lady is eventually called in to hear exactly how many days she has left to live. Guess what? No sign of cancer - she is very lucky. If she is concerned about the cancer she never had in the first place, she can come back in for more checks in a years time...

"So what about the back pain!" shout the family.

Oh, back pain, don't worry about that! When you get to your 70s, "You must accept an increasing amount of degenerative change" - aaaaaaaargh!

 

[ColinJ]

I know that the medical profession does some amazing things and, boy, would I be grateful for them if I needed them. Actually, I am grateful, because my mum is currently receiving treatment for various conditions, and has had successful surgery several times in the past. (I was both horrified and impressed by the size of a gallstone that they extracted from her years ago!)

What bugs me about some professionals, and I'm not just talking about medical professionals, is the breathtaking arrogance that some of these people have!

I tried explaining to a GP once (on one of my extremely rare visits) that I had perhaps perforated an eardrum when swimming. I told him that I'd gulped underwater, there was a loud POP, water rushed into my ear and I got waxy, foul-tasting chlorinated water coming down the back of my throat. 

He told me that it was anatomically impossible, there was no route through the ear to the throat. It couldn't have happened. I had "imagined it".

I said "What about the  Eustachian Tube then?" (Looks to me that there is a route through there once the ear drum has perforated! )

He leapt to his feet and started ranting to me about which medical school he'd been to, how many years he'd studied etc. etc. He didn't like it one little bit that I was trying to have an intelligent conversation with him about my problem.

I can't see what is wrong with ASC1951 wanting to carry on with an active lifestyle, one which is presumably reducing the burden he places on the NHS. If the price of that is a second opinion from another doctor, I say - go ahead!

 

[ColinJ]

[QUOTE 1206328"]
I had mother in front of me once, we were discussing why her son had just been sectioned and put in a locked ward.
[/quote]
I know that mental health issues aren't a laughing matter, but I'm afraid I howled at that!

(It sounds like you, with your mother and that you were talking about yourself in the 3rd person... )

[QUOTE 1206328"]
Some people, as I would suggest you did with your ear, like to ambush professionals with their little bit of knowledge, and do not understand or appreciate how the whole fits together.
[/quote]

I merely gave the doctor a description of what I was doing at the time, what happened, and how it happened.

I was told that what had happened, didn't happen, couldn't happen, and I'd got it wrong.

I politely informed the GP that I was actually there at the time and he wasn't. I'd gone deaf in one ear. There was crap coming down the back of my throat which had never been there before (nor since BTW).

He repeated his mantra - I was told that what had happened, didn't happen, couldn't happen, and I'd got it wrong. There was no physical route for water to go through a person's ear into the back of his throat. Only at that point did I mention my 'little bit of knowledge' which just happens to be an anatomical truth that he was denying. I suppose that I should have listened to him (with my one remaining working ear) and been grateful that I hadn't 'imagined' both ears perforating. 

I repeat - some professional people are arrogant oafs.

 

[snorri]

User76 , just what are you on today :?: , you do seem a bit OTT

 

[ASC1951]

[QUOTE 1206323"]
So, your GP with years of medical training you think is wrong, and I guess you are basing this on a quick internet trawl of your symptoms...

Now you want to access a rheumotologist to get a diagnosis that matches yours. Lets think why your GP made his diagnosis shall we?

Are your symptoms worse in the morning, are they symmetrical, do they ease on exercise, which joints exactly are involved, big joints or small joints, what is your CRP level? If you start searching the web for differential diagnosis of rheumotoid vs osteo arthritis you may begin to understand why he came to the conclusion he did.

Finally, in this bad tempered rant at you .... maybe you should see a psychiatrist as well
[/quote]
For heaven's sake, Maggot!

That's not just a bad tempered rant, it's a bad tempered ill-informed rant.

My GP made her diagnosis on the basis of an eight minute consultation. Her years of medical training did not extend to asking me any of those questions, apart from "which joints?" Her diagnosis on this occasion is almost entirely theoretical, whereas I have the advantage of knowing this particular body much better than she does and having observed over several months the progress of the symptoms I was complaining of.

Far from doing an internet trawl for my mate Bert's condition, I read very carefully what the NHS' own website said, in particular the diagnostic differences between osteo and rheumatoid arthritis. Some of my symptoms are suggested as being more typical of an inflammatory arthritis; which, furthermore, may be controllable in a way that osteoarthritis is not.

GPs are generalists and the way that the surgery appointment system operates is that the most likely diagnosis is always offered first, on the basis of the patient's reporting of the condition plus a very basic examination. Only if the patient comes back later are less likely diagnoses, tests or treatments considered.

If you think patients should unquestioningly accept what they are told in an eight minute appointment, just because they are told it by someone who did a lot of training several decades ago, you are a fool, Maggot. In my early 40s I had a foot injury which stopped me running. My then GP told me unequivocally that I had ruptured fat pads in my heel and I would never run again. A consultant told me I had badly damaged the attachment point of a ligament and gave me a course of expensive, painful - and totally ineffectual - cortisoid injections. They were both completely wrong. I had in fact built up an imbalance in two small muscles at the front and back of my shin, which a physio was able to correct in a month with targeted resistance stretching.

Anyway, I've been back to see my GP. She feels blood tests and possibly xrays are appropriate before she can confirm her initial diagnosis, so that is what we are going to do.

 

[snorri]

[QUOTE 1206331"]
Snorri, I have no idea what you are talking about I'm sure
[/quote]
I thought your response to a very calm, reasoned and non-critical OP was, errr, rather robust.
Sorry if I misunderstood.

 

[Bill Gates]

I view a visit to the GP as an unfortunate and time wasting step in the process of getting treatment from the couldn't give a sh!t appropriate department in hospital. Listen to this saga.


Pain in both knees, unable to ride bike, March 2010

Phone doctor for appt. 2 weeks wait

See Doctor begin April, sends me for an X ray

Walk in same day hospital, told to wait 10 days and make an appt see doctor.

phone GP mid April for appt. 2 weeks wait.

See Doctor end April sends a letter to Hospital for consultant. Believes one knee has calcified cartiliage and other is so bad need knee replacement surgery.

2 weeks later get letter for appt hospital. Friggin 6 August!!!!

Attend hospital and see the registrar. Isn't preapred to discuss much about calcified cartiliage but says we're going to give you a knee replacement for the other knee. I've got all sorts of questions but not interested. Arranges for appt pre surgery.

Begin Sept attend appt hospital for pre surgery assessment. Raises more questions re my surgery but told only consultant can answer.

Phone Hospital next morning to arrange a consultation prior surgery. Told not possible. So ask to come off surgery list and re-appt only this time to speak consultant. Told end of October begin November. No letter giving me date of appt yet received. If I phone again I know it's going to be Oh Dear new appt January 2011. Ridiculous.

I've just given up!!!

Knees no longer painful so getting on the turbo today and see how it goes.

 

[fossyant]

Maggot, there is no need to 'go off on one'

The OP hasn't had a 'hissy fit' with anyone.

In my experience, anyone who is active and fit, but has a problem is somewhat 'dismissed' by many medical folk - "oh can't hurt much if you can do xyz" - that's in comparison to the 80-90% of lazy moaning buggers that they see day in day out.

In my case, my GP has been very good, but the consultant has dismissed my pain in my shoulder as I 'still do heavy duty cycling'.... trying to explain the pain in your shoulder is cancelled out by the screaming coming from your legs, lungs etc. when doing say a 100 mile sportive...they don't get it......... they don't do exercise like that !

I have a colleague who was a triathlete, swimming a mile every morning etc. Had apendicitis but the doc wouldn't believe her - "you can do a mile swimming"...."erm I'm doubled up in pain though" ..............

The OP is fit, and is concerned that the GP has 'passed him off'.....he had a right to be concerned.

It took 18 months of pestering to get my shoulder MRI'ed after I was knocked down (despite saying - my shoulder is really painfull) - they MRI'ed my spine instead, despite when getting into said machine - "you are 'MRI'ing my shoulder aren't you ?" - "Er no, your spine....." Many trips back to GP, wait, referral, wait, see specialist again for 5 mins, wait, referral, wait, MRI, wait, see consultant for Results. The bit from GP referral to getting results took 6 months both times..........

 

[fossyant]

Mate, the OP never said the NHS were rubbish. He hasn't had a go at anyone. He's asking where else might he go - as you mentioned a BUPA prvate consultancy might just help.

Chill a little !

 

[Bill Gates]

[QUOTE 1206336"]
I don't believe the first bold. At the time you went, the surgery would have been obliged to offer you an appointment within 48 hours. Could you not make it until 2 weeks time. In fact what surgery are you with, I'll ring them and try and get an emergency non-registered appointment today.

10 days may be stretching it, but if it was an emergency you would have had he results within an hour. The xrays would ahve been stacked up in order for a report to be done without it being an emergency.

2 week wait again, my you are unlucky.

If your questions are not answered, get yourself on an assertiveness course.

Your presurgery assessment was done by a nurse, consenting and information rules that the person who answers or gains the consent must be someone who will be, could carry out the procedure. The nurse was spot on.

Unless you phone, how on earth do you know when the new appointment will be.

I think we have to face the fact you are scared like a little girl by the surgery, and just want to moan about the service instead of manning up and having the operation.
[/quote]

I'm not a liar.

I spoke with secretary of consultant on the telephone who told me that the earliest appt to see consultant was end Oct begin November. I'm waiting a letter with the date of appt. As I haven't had one yet my guess is that the system has failed me.

Scared like a lttle girl am I?

I've had 4 ops on that knee over the years. Also raced my bike after 2 x heart attacks. Never backed away yet from a confrontation, and happy to meet up to prove it.

 

[Bill Gates]

[QUOTE 1206342"]
Well it's a shame I don't still live in Littlehampton, or I'd take you up on that.
[/quote]

Where do you live?

 

[Bill Gates]

[QUOTE 1206344"]
Well, what I have done is to include that information in my profile that displays on the screen, although I confess, I have hidden it next to the word 'Location'
[/quote]

OK. I'm not about to travel to Cheddar either.

I'm not happy with your language. You've called me a liar and scared like a little girl. Neither is true but even it was it crosses the line of what is acceptable for me. What is mystifying is to why you said it anyway. It wasn't as though as I was having a dig at you or any body else. It's easy to say those things on the internet but are you the sort of person who is prepared to say those things to my face? I live in Crawley and I would dearly like to give you the opportunity to do that. Personally I don't think you've got the guts.

 

[ChrisKH]

[QUOTE 1206328"]
I had mother in front of me once, we were discussing why her son had just been sectioned and put in a locked ward. She produced several pages of internet research and ranted at me, very loudly, that I was just in cahoots with the doctor and the police because everyone thought her son was bad un.

I listened, because thats what I do, and she showed me articles from the internet that she had pulled off, she was using them to explain how hearing voices and trying to jump in front of train to stop it from derailing because of the aeroplane that landed on the tracks to take low level pictures for Google Streetmap (I am not making this up) was a result purely of zinc and potassium deficiency, and we only to give him drugs because we were in with the drug companies (that was a seperate article she showed me). I am still not sure we had the right family member sectioned to be honest.

Some people, as I would suggest you did with your ear, like to ambush professionals with their little bit of knowledge, and do not understand or appreciate how the whole fits together. To diagnose disorders you need more than one criteria to be fulfilled. For instance to have depression, you don't just have a low mood. You must also have at least 4 of:
disturbed sleep
disturbed appetite
guilt or feelings of low self worth
pessimism
fatigue
agitation
diurnal mood variation
poor concentration
suicidal thoughts or acts
loss of self confidence
sexual dysfunction
then we must rule out other similar disorders such as anxiety, insomnia, alcohol use. It's not as easy as saying you're a bit down, it's depression. It will be the same with arthritis, although I don't know all of teh criteria, I'm sure we could Google it though. It's not just a case of ankle and knee pain, bingo rheumotoid arthritis.


So ASC should have a grown up discussion with his GP, not look something up and then see his GP, then come on here and say his GP is wrong and how does he get a rheumatologist in Leeds. ASC, did you tell the GP your internet researched concerns? Or did you just come on here to bitch about him?
[/quote]


But she could have been right though? My mother was in the opposite corner, being treated for a complete mental breakdown and restrained in her bed, etc. and the doctor was convinced that she had a mental issue because she had once had a break down in the past. Turned out her electrolytes were all over the place and as a result of poor/no immediate treatment she went into a coma. She acted in a completely mad fashion because of her electrolyte level, which was later found to be as a result of a cancerous tumour on the lung. Now, as a professional I would rather someone came to me with an internet diagnosis so I could tell them why it wasn't what they thought it was. Doctors are not perfect for one thing and managing a patient's expectations, which includes internet diagnoses, is all part of the job.

 

[Fiona N]

Oh come on User76 - everyone can tell good stories about the fantastic treatment they or someone close to them have had from the NHS. And we're all extremely glad that it's there - especially if you've lived in a country with private health insurance as standard (I always find it odd, when people talk about Switzerland being a 'low tax country' they somehow fail to consider the several thousand pounds a year required to obtain insurance for the sort of medical care we take for granted in this country, funded from our 'high' tax). The thing is that the more serious problems - heart attack, stroke, cancer - seem to get generally amazing treatment. But it's the less serious, non-life threatening stuff where it all to frequently seems to go wrong.
Now I would hate to infer that cardiologists, oncologists and related specialists are somehow better people than orthopedic specialists, and it could be that having had your life saved you're not in a position to complain about the former, but the experiences of my family is rather that patients with conditions which are merely damaging to quality of life as opposed to life-threatening are treated rather differently.

Even more extreme is the story of someone I know who has both ulcerative colitis and secondary (returned, pre-menepausal) breast cancer. She has said over and over that the way she is treated by the cancer specialists is completely different from the bowel people. The former involve her in the decisions, talk through the options, take on board how she feels about the options etc. The bowel specialist merely sends down his opinions from on high and recently this almost killed my friend when he refused to recognise a problem. it was left to the oncologist to realise that a change in medication for the UC had caused pancreatic failure as my friend realised that the symptoms she had weren't the usual ones from the chemo. At her last consultation with the bowel specialist she had specifically asked that he check the drug changes would not impact on the chemo or vice versa but he said it was unnecessary as there were no such conflicts. Even when she reported back the problem a few days later, she was told a new appointment wasn't necessary and she should continue with the new drugs for 6 months after which the situation would be reviewed. Two weeks later my friend was in intensive care.

This is exactly the sort of arrogant, know it all and the rest be damned, behaviour that people complain about. We know it's not the NHS in general, it's usually down to specific individuals, sometimes aided and abetted by 'the system' - particularly short consultation slots and busy schedules. I (and probably most other people) realise to be a doctor, and especially a surgeon, does demand a very high level of self-belief - it definitely is not a job for people who have self-confidence issues - but that should not tip over into arrogant disregard of the experience of the patient. GPs making you feel like you're wasting their time as you're complaining about arthritis despite being in your 60's because 'you're at an age where such things are par for the course' is part of this.