Do you know of a good rheumatologist in London?

anthony1

Hi all,

thanks for a great forum! I was diagnosed with PA about a month ago by my GP, and through a combination of my GP being stubborn and a hospital internally losing a referral, I've yet to even get an appointment with a rheumy on the NHS.

I can afford to see a private rheumy once or twice (but not all the time), and from what I hear it's really important to see a specialist as early as possible, so here's my question:

Do you know of a good rheumy in London? By good I mean someone (obviously) knowledgeable but also willing to take the time to listen and EXPLAIN the options available. Not someone who will keep asking me to go back just to make more money, or try to get rid of me in 5 minutes with a bunch of Ibuprofen (like my GP).

I'm really frustrated with the situation with my GP and the hospital, it only makes matters worse.

Thanks in advance,
Anthony

stickywicket

Hello Anthony and welcome to the forum. I'm afraid I can't help with a rheumatologist in London as I'm up in Yorkshire but I'm sure someone will be along soon who can.

Lost referrals etc seem to be a recurring problem these days. It must be very frustrating for you that this has happened before you even get to see a rheumatologist.

I'm pretty sure no rheumatologist would send you home with just ibuprophen with a diagnosis of PsA. Unfortunately, that's all your GP can do. They can't prescribe the stronger stuff: only the rheumatologists can do that.

I hope someone can help out soon.

frogmorton

Am in the Midlands here Anthony so not much use to you :oops:

You need someone (anyone!) who has experience in your area. is it googlable??? Is there a local branch of arthritiscare in your area where you could meet others who have arthritis and might actually have personal experience???

What l will say is that private rheumatologists (well private anythings ) DO tend to take more time, listen and explain more than our Gps possibly can.

love

toni xxx

(dont give up on here things can get busier in the week )

salamander

Hi there,

I also had to wait quite a while to get a rheumatology appointment in London, a month is not that long to wait to be honest. I waited longer and that was for an extremely urgent referral! Once I was seen my care was superb and has been ever since. I can't recommend mine as he is semi-retired and I would say that my specialist nurse at the hospital is the person I have most contact with and she comes entirely free!

You could google rheumatologists that see private patients but, if you have already been diagnosed as having Pa, do you really want to pay for your medication as, as far as I am aware, you can't mix private treatment with NHS funded prescriptions?

JoeB2

[ text deleted]

sorry folks but you can't name 'good' or not so good Consultants on the open Forum... but you can make suggestions by PM ! Moderator

anthony1

Hi everyone,

Thanks for your replies. I'm keeping my NHS appointment (when I finally get it!) but really feel I have to see a specialist asap - a month is a month too long, as I've waited for a month already with no result and I'm in pain.

A couple of people said that I can get prescriptions on the NHS from my GP even if I go to a private rheumy, so I'm still looking for a good one.

Any suggestions, please PM me.

Thanks again for your support, and hope all of you are well.
Anthony

dreamdaisy

One person's good rheumatologist is another's nightmare. I think personality plays a part - both his and yours. The first one I saw told me there was nothing wrong with me (he retired the following month) the second was lofty and condescending (others love him) and my third is good (probably because we get on OK). A month is not too long to wait and for the pain try taking low-level pain relief on a regular basis to ease matters. DD

stickywicket

I think DD has a point. It can be a matter of how your two personalities gel or don't. Also, I've found that the best docs aren't always the ones with the best bedside manners. I once had a GP who was kindness itself and would talk for a long time but was renowned for rarely prescribing anything other than plenty of oranges and long walks - regardless of one's illness.

A month may seem a long time when you're in pain but, with arthritis at least, it's pretty routine. I've just spent 6 weeks waiting for my new orthotic insoles. I got them on Friday. They hurt :roll:

mig

The private one could well be the NHS one you wait for.Mig

JoeB2

I've PM'd you Anthony. I hope this is of some help.

One point regarding your follow-up post about being in pain.......
........Rheumatologists do not have a monopoly on analgesia. I would ask your GP to prescribe as appropriate in the interim.

If they are unsure what to prescribe then I would recommend they seek advice from a Rheumatologist via this marvellous invention called the telephone.

Alternatively, I seem to recall hearing someone talk about a concept called "e-mail". I wonder what on earth that could be ?

If all else fails then have a word with a Pharmacist to see what they would recommend as milder versions of suitable medicaments can be obtained at their discretion.

anthony1

Thanks Arthur,

Problem is GP flipped me back to Ibuprofen (which only makes a minor difference) when Naproxen had no effect on me - in his words "these are the best options". GPs are so busy they can't be bothered to do anything else. I was only referred to a rheumatologist because the hospital disagreed with my GP's referral to a hand specialist - it was the wrong department!

I've seen 2 GPs at my practice and get the feeling they both don't think much more than "you'll have to live with this, take some ibuprofen and deal with it". If I am to go on stronger meds, I'd rather get treated as early as possible, because research suggests this is more beneficial than treating it later and can even get PA into remission. If a specialist says ibuprofen is the best, then I'll shut up and stay on it. In the meantime, I'm frustrated with the whole referral system.

Although I understand where they are coming from, I have to respectfully disagree with those saying that 2.5 months to see a specialist isn't too long - especially for a first appointment. I still haven't got any appointment anyway, it's sitting on someone's desk somewhere at the hospital and it's been a month already of making no progress at all!

Arthur45 wrote:

I've PM'd you Anthony. I hope this is of some help.

One point regarding your follow-up post about being in pain.......
........Rheumatologists do not have a monopoly on analgesia. I would ask your GP to prescribe as appropriate in the interim.

If they are unsure what to prescribe then I would recommend they seek advice from a Rheumatologist via this marvellous invention called the telephone.

Alternatively, I seem to recall hearing someone talk about a concept called "e-mail". I wonder what on earth that could be ?

If all else fails then have a word with a Pharmacist to see what they would recommend as milder versions of suitable medicaments can be obtained at their discretion.

JoeB2

I can understand your GP starting with Naproxen - it's a good, well established, "middle-of-the-road" non-steroidal and, as such, as good a point from which to start as any.

Although I forget the exact figures - a certain number of patients will respond favourably to any NSAID (eg. Ibuprofen) with the remainder it is very much an issue of "suck it and see". Obviously you are with the remainder (which I think is actually the majority).

The British National Formulary, known in the trade as the "BNF" - and now available online to the public (http://www.bnf.org/bnf/index.htm), suggests that if no improvement is noted after two weeks then an alternative should be considered. There are a plethora of NSAIDs from which to choose from so one tends to start with the "low(er) side effect profile" options and work from there.

What used to be called "The data sheet compendium" is also now available online ( http://www.medicines.org.uk/emc/ ) as are "The NICE Guidlines" (http://www.nice.org.uk/). The latter have nothing to do with being inoffensive but are rather published by the much (wrongly IMHO) maligned National Institute for Clinical Excellence.

It's all out there ! (Perhaps I should get out more......?).

Unfortunately with many conditions, be they Rheumatalogical or otherwise, the best that can be achieved is effective management of symptoms. Fortunately, as Rheumatological diseases are fairly common there are a lot of options - drug and otherwise.

While you await your consultation with a Rheumatologist (did you manage an appointment for tomorrow ?) you could discuss with a Pharmacist your "over the counter" options for "breakthrough pain".

Alternatively, if your consultant appointment is still some days away, then I would suggest returning to your GP for a review - particularly if you have been taking the Ibuprofen for more than two weeks with limited effect.

Ultimately the maxim "Pain is what the patient says it is" applies to these situations.

I appreciate that many GPs are busy but they do get (quite well) paid to manage these issues and "if they can't stand the heat............!"

Arthur

anthony1

Hi Arthur,

Thanks for the valuable references - especially the one about Naproxen and 2 weeks. I was on it for a week with no improvement at all before seeing the GP. Ibuprofen made a slight difference, so back on that I was. No other option for my GP (until I start screaming in pain anyway, which I'm not yet).

I understand the process and appreciate there'll be a lot of trial-and-error, but I need to feel like we are making some progress and not going back and forth. What you said about 2 weeks is a good example, my GP didn't seem to be aware of that. The result is that I wasted a week on a pill that we're not sure if it did have any effect or not, and which is kinder than Ibuprofen. I've been on ibuprofen for 4 weeks already and a bit worried about its side-effects

I'll do my home research this evening and call tomorrow to book an appointment. Thanks again!

Arthur45 wrote:

I can understand your GP starting with Naproxen - it's a good, well established, "middle-of-the-road" non-steroidal and, as such, as good a point from which to start as any.

Although I forget the exact figures - a certain number of patients will respond favourably to any NSAID (eg. Ibuprofen) with the remainder it is very much an issue of "suck it and see". Obviously you are with the remainder (which I think is actually the majority).

The British National Formulary, known in the trade as the "BNF" - and now available online to the public (http://www.bnf.org/bnf/index.htm), suggests that if no improvement is noted after two weeks then an alternative should be considered. There are a plethora of NSAIDs from which to choose from so one tends to start with the "low(er) side effect profile" options and work from there.

What used to be called "The data sheet compendium" is also now available online ( http://www.medicines.org.uk/emc/ ) as are "The NICE Guidlines" (http://www.nice.org.uk/). The latter have nothing to do with being inoffensive but are rather published by the much (wrongly IMHO) maligned National Institute for Clinical Excellence.

It's all out there ! (Perhaps I should get out more......?).

Unfortunately with many conditions, be they Rheumatalogical or otherwise, the best that can be achieved is effective management of symptoms. Fortunately, as Rheumatological diseases are fairly common there are a lot of options - drug and otherwise.

While you await your consultation with a Rheumatologist (did you manage an appointment for tomorrow ?) you could discuss with a Pharmacist your "over the counter" options for "breakthrough pain".

Alternatively, if your consultant appointment is still some days away, then I would suggest returning to your GP for a review - particularly if you have been taking the Ibuprofen for more than two weeks with limited effect.

Ultimately the maxim "Pain is what the patient says it is" applies to these situations.

I appreciate that many GPs are busy but they do get (quite well) paid to manage these issues and "if they can't stand the heat............!"

Arthur

JoeB2

My pleasure.

Arthur

dreamdaisy

One thing that one learns with this malarkey is patience. Many of the meds take between two to twelve weeks to begin to make a difference and even then the difference may be miniscule. Pain relief is temporary and the tablets only tend to dull the sharper edges, it always returns and learning to live with it is one of the biggest challenges we face. As for side effects well, they are not guaranteed and when you start on the 'big' guns' it's best to ignore them. With regard to your 'respectful disagreement' please remember that many of us on here have ben playing this game a darn sight longer than you and realise that the NHS moves at its own sluggish pace due to the huge numbers of people that require its services. (I lost an entire year being bounced between rheumatology and orthopaedics.) One of the main problems with arthritis is that we DO have to live with it, the meds are not cures as such, all they do is slow the process (if one is lucky) and it can take some time to find the one or ones that will suit (or even better) help you. I wish you well and hope you soon get to see someone. DD

anthony1

Hi DD,

Sure, I've learned to be patient ever since I got Psoriasis, 10 years ago. Psoriatic Arthritis is just another, albeit quite different, symptom of the same disease.

My problem is with my stubborn GPs and incompetent hospital admins. I've lost a whole month, with no progress at all, just because my GP wanted to refer me to a hand specialist instead of a rheumy, and because the hospital then lost the referral. I've wasted over 3 hours on the phone between different hospital departments, and still waiting for an internal fax(!) to get through to someone's desk. It's not the huge number of people requiring services in this case, it's the stupidity of the people involved. If my GP had referred me straight to a rheumy, none of this would've happened and that's why I'm peeved, not with the 1.5 month wait. Plus all this stress is doing no good to PA.

Sorry for the rant, but I think my comment about the 1.5 month wait wasn't clear enough. My frustration is for having achieved nada waiting for a whole month with no appointment and even when I get the appointment, it will be another 1.5 month of waiting.

We DO have to live with arthritis, but I'm sure we could all live without the add-ons of mis-administration.

Thanks and all the best,
Anthony

dreamdaisy wrote:

One thing that one learns with this malarkey is patience. Many of the meds take between two to twelve weeks to begin to make a difference and even then the difference may be miniscule. Pain relief is temporary and the tablets only tend to dull the sharper edges, it always returns and learning to live with it is one of the biggest challenges we face. As for side effects well, they are not guaranteed and when you start on the 'big' guns' it's best to ignore them. With regard to your 'respectful disagreement' please remember that many of us on here have ben playing this game a darn sight longer than you and realise that the NHS moves at its own sluggish pace due to the huge numbers of people that require its services. (I lost an entire year being bounced between rheumatology and orthopaedics.) One of the main problems with arthritis is that we DO have to live with it, the meds are not cures as such, all they do is slow the process (if one is lucky) and it can take some time to find the one or ones that will suit (or even better) help you. I wish you well and hope you soon get to see someone. DD

dreamdaisy

I did it the other way around - I aquired the arthritis before the skin (trust me to be different) and the skin is being a real nuisance at the moment. Do you have any tips for dealing with a psoriatic scalp? Hospital departments don't talk to each other that easily - I have no idea why - but once all the pieces do drop into place then things can (and will) get moving. I'm sorry if I came across as being a little grouchy last night - pain was getting the better of me. The joint damage caused by the PsA has led to OA in my knees and ankles and that was really biting last night. It still is but no matter - onwards but sideways is my motto! DD

tillytop

Hello Anthony - belatedly, welcome to the forum.

Having read this thread just a couple of (possibly) helpful thoughts based on my own 17 year experience of RA, hospitals, meds etc :roll:

In terms of the frustration with the hospital and appts etc, just wondered if your hospital has a PALS (Patient Advice & Liaison Service). Many do these days and I discovered this quite by accident at my hospital a couple of years ago when I was having difficulty with a particular dept and PALS were brilliant! They spoke directly to the dept concerned and rang me back the same day with an appt.

Second - and this is just a word of warning based on my own experiences with trying to mix private and NHS rheumatology care. Be very, very careful before you embark on that route that you know for sure what the cost implications will be. Things may well have changed over the past few years but my first rheumatology appt was private because of the waiting time and it's very easy to get swept along by the private rheumatologist saying "while you are here, lets do x-rays, blood tests" and then the bill comes and it can be terrifying! The first rheumatology appt is likely to include other tests and they can be very expensive and, in my experience, often no-one can tell you exactly what the cost will be at the time. As for seeing the rheumatologist privately and having the meds, other tests etc on the NHS, again, you need to be absolutely sure of your ground here. After the intitial huge bill, I continued to see the private rheumatologist but I went to the GP for the next lot of blood tests. All was fine, until I got a bill from the GP surgery because, as far as they were concerned, it was a private request, so they charged me. Nobody told me this at the time - it was only when the scary bill arrived that I realised what had happened. The same happened again when I went to hospital for an infusion - although the infusion was on the NHS, I was billed for the blood test processing, the equipment used for the blood test, and the nurse's time. And I think you may find that your GP is not happy about prescribing something on the NHS which has been requested as a result of a private consultation - and I think private prescriptions are something like £50 a go! As I say, things may be different these days, but with NHS budgets constraints being what they are, I would advise you to be very certain of the implications before you start out. Inflammatory arthritis can require a number of different meds, many of which mean regular blood tests to monitor progress and drug side effects (sometimes as frequently as fortnightly) so it can get very expensive very quickly. I did eventually come to an agreement with a different private rheumatologist whereby he saw me as and when needed "for advice" but I was still officially registered with his NHS colleagues so all my prescriptions etc were NHS. When I needed meds, he would tell me what they were and I would go to the GP for them and all was fine. That only worked I think, because he was, at the time, in charge of the NHS rheumatology dept and was able to "call the shots" so to speak.

Hope you do get to see someone soon though, whichever route you choose.

Tilly xxx

anthony1

Hi DD,

Thanks for a good laugh with onwards but sideways!

Scalp has been the most difficult for me - it has never completely gone away and when I started treating it aggressively, that's when PA hit. My 'theory' is that my body has to take it out somewhere, if I suppress one thing it will do something else, so there is no use fighting it all the time, just accept it at a place where it's the least inconvenient and live with it. For me that has been the scalp.

As for tips:
Avoid using any sort of products on your hair if you can, this has always aggrevated it for me.
The most useful treatment has been Sebco. It probably stinks a bit (alhtough I like the smell!) and is very greasy and you have to keep it on for a couple of hours before showering, but it does make a difference after a week or so.
I've also tried capasal and oilatum shampoos, but they didn't do much for me.
You can also try washing your hair with olive oil, it has helped some people with excessive flaking and it's good for your hair anyway!

For the rest of the body, the best moisturiser I've found is Calmurid. Yes, it contains urea (and yes it stinks big time!) so only for evenings/weekends. Plus, if the skin is chapped it stings a lot for about 10-15 minutes after the application - try not to scratch! But it's the strongest moisturiser I've ever tried and after 1-3 days makes a visible difference to my skin. I 'll always try that first before I try any steroid creams. I've also found Diprobse cream emollient a good alternative for everyday use (no smell).

Best of luck, hope these tips help.
Anthony

dreamdaisy wrote:

I did it the other way around - I aquired the arthritis before the skin (trust me to be different) and the skin is being a real nuisance at the moment. Do you have any tips for dealing with a psoriatic scalp? Hospital departments don't talk to each other that easily - I have no idea why - but once all the pieces do drop into place then things can (and will) get moving. I'm sorry if I came across as being a little grouchy last night - pain was getting the better of me. The joint damage caused by the PsA has led to OA in my knees and ankles and that was really biting last night. It still is but no matter - onwards but sideways is my motto! DD

anthony1

Hi Tilly,

Thanks for your tips - I was about to book a private rheumy today but you got me thinking. I'll call the hospital again today and if they still can't find it I'll use the PALS service, thanks.
Swelling is a bit better (I think it's the Arnica cream, but I might be hallucinating!) so it might be worth waiting...

Aaargh.. decisions decisions!

Seriously, thanks for the warnings though. I can't afford to go down that road!

Best,
Anthony

tillytop wrote:

Hello Anthony - belatedly, welcome to the forum.

Having read this thread just a couple of (possibly) helpful thoughts based on my own 17 year experience of RA, hospitals, meds etc :roll:
...

suzygirl

I had a private consultation which was only £90 however the bloods were over £500 :shock: The consultant was brilliant and minimised the costs when he realised we were self paying.

The GP was not happy about prescribing the med he suggested, and it caused a few problems.

I do now realise that living with arthritis is a waiting game all the time. We wait for appts, meds to kick in, flares to end etc etc

I hope your appt comes through soon, and that you do get started on a med at your first appt. Although sometimes they want to run yet more bloods and x rays first.

JoeB2

I have spoken with my wife (who works in healthcare outside the NHS system). She advised me a Consultant's fee of around £250 is about the standard cost for a new patient appointment in London.

To get an idea of blood test fees she suggested you take a look at this website ( http://tinyurl.com/9dnerey ) and, perhaps, give them a call to enquire. The tests probably most likely to be appropriate in your case are the various "Rheumatology Profiles" (a fair way down the page). She did caution that she has known fees of up to £2,000, in exceptional cases, for new (Rheumatology) patient blood tests.

Obviously your consultant may use another company but fees do tend to be broadly similar. Additionally, if your GP has undertaken any blood work then further investigations in this regard may well be uneccessary.

There may also be other fees for services such as venepuncture (blood taking) and administration, but hopefully this should give you an approximate idea of the costs likely to be encountered.

As others have already suggested - a word that you are "self-funding" will usually help to mitigate costs.

I hope this is of some interest.

Arthur

suzygirl

£250 hey? My consultation was 5 years ago, but it appears that my internationally reknowned hospital (not sure allowed to name ) is a bargain!!!!

JoeB2

suzygirl wrote:

£250 hey? My consultation was 5 years ago, but it appears that my internationally reknowned hospital (not sure allowed to name ) is a bargain!!!!

Agreed - It does seem like something of bargain.

Arthur

dreamdaisy

Thank you Anthony, there are some useful tips in there. I spent my childhood smothered in eczema and I've noticed that the bursts of P that I now get are in places where the eczema never ventured, namely my scalp, the inside of my ankles (just under the bone) and on my soles and palms. Yuk. I have Dovobet but that doesn't seem to do much and I don't use any scented products or moisturiser - just aqueous cream. I am one very cheap woman.

Tilly has, per usual, given you some extraordinarily good advice. She is a very wise woman and knows her stuff. I have seen my NHS consultant privately but not for prescribing stuff, just for a thorough consultation. That may be an option for you in time.

Once again, thank you. DD

anthony1

Thanks again everyone for the very helpful advice. £90 is 'nothing', £250 is still OK, but no way I can afford such expensive exams. Most of those were done on the NHS anyway, so hopefully that'll be enough for an initial consultation.

I spoke to my GP and he is ok to prescribe anything a private doctor suggests "as long as it's something we would normally prescribe". I take that as a yes!

He'll also chase up my hospital appointment and tomorrow I'm also going to their PALS team in person to find out what's happening, as there's still no appointment and today I got a choose-and-book reminder saying I haven't booked my appointment, with a reference number I've never seen before! Arghhh! It adds insult to the injury plus it's weird, as rheumatology at Guy's hospital say they don't accept choose and book appointments....