Contacting Prof Dasgupta

[Devoid]

I have become concerned that the team at my local hospital have either little experience or interest in LVV . I am considering my options. Has anyone contacted Professor Dasgupta direct, rather than going through their consultant ?

[Theziggy]

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[Devoid in reply to Theziggy]

On here large vessel vasculitis!

[PMRpro Ambassador in reply to Theziggy]

Like PR: Public Relations, palindromic rheumatism, per r... (medical anatomical) ...

[MrsNails]

It’s against protocol to contact another Specialist yourself directly & would place the Prof in a very difficult position, the same would apply even if you wanted to see him privately (even if he has a Private Practice)

You can ask your GP for a Second Opinion Referral but he may be reluctant if it’s Out of Area, you can only ask.....

You can also ask your Consultant for a Second Opinion, that is your right & he may be prepared to do this for you.

MrsN

[Devoid in reply to MrsNails]

Hi my G.P early on said to ask consultant. Initially I felt the consultant had got my best interest at heart but since I declined continuing with methotrexate he appears disinterested. I have had my last 2 appointments with a doctor doing his rotation for G.P training, very good bedside manner but clueless on LVV .When I increased the steroids when I thought I was having a flare he said I shouldn’t have done that but should have left a message on the rheumatology nurse number, which is an answer phone, which they try to get back to you within 3 days!!!

[PMRpro Ambassador in reply to Devoid]

If you are lucky - someone I know hadn't got through to hers to even leave a message, it is permanently engaged. She called the hospital switchboard in case there was a fault or someone had left it off the hook - not interested, keep trying they said.

[Devoid in reply to PMRpro]

I couldn’t believe the doctors response, to think he’s going into general practice is just worrying, he had no idea that I was getting tocilizumab for longer due to covid , and no idea how I would be monitored once off medication which he seemed to think was a walk in the park!!they had called me in for a face to face appointment then I saw this chap , not a permanent member of the team. I certainly wouldn’t have risked going in if I’d known

[PMRpro Ambassador in reply to Devoid]

I saw a consultant at the first appointment and was sent for tests and a 6 week taper of pred to cover a business trip to the US. At the second appointment I assumed I would see him again as I still had no diagnosis and surely he'd want to hear about the response to pred in a query PMR case????? No, a stranger. Who repeated the first consultation almost word for word and action for action and wasn't in the least interested in the response to pred. Then admitted he hadn't a clue and went to get the boss. A waste of my time and his time. It turned out he was "a GP with a special interest".

[Devoid in reply to PMRpro]

I was annoyed with myself that I didn’t challenge but I think I was just gobsmacked that they felt I needed to be seen and then it was such a waste of time. I’ve had my next appointment through, a telephone consultation in March!

[DorsetLady PMRGCAuk volunteer]

Have a look at this -

thelondonclinic.co.uk/consu...

Not NHS methinks.

[Devoid in reply to DorsetLady]

I can See that he does a private clinic and does zoom appointments, I just feel that I am doing so well and now have a decent quality of life that I don’t want to mess it up at this stage. My consultant thinks I should be off steroids prior to finishing tocilizumab, which doesn’t seem in line with what Professor Dasgupta said in his webinar

[DorsetLady PMRGCAuk volunteer in reply to Devoid]

Well - give it a go then. Nothing ventured, nothing gained.

Just have to say he wouldn’t take on someone I knew who was having issues with her GCA because it hadn’t been diagnosed with a biopsy!

I know your biopsy was negative - but your scan for LVV was positive.

Let’s us know how you get on please.

[Maisiek]

I saw the Prof initially as a private patient, but I’m lucky to be local . Good luck .

[Kendrew]

I see Prof Dasgupta privately after asking my local rheumatologist to refer me to him because I'd heard he was a leading authority on PMR/GCA, but I have to say, I have begun to feel he treats me more like I'm one of his 'guinea-pigs' rather than an individual patient, and I've never really seemed to come away from an appointment feeling settled about things. At one appointment I even asked him if he thought I actually had PMR, to which he shrugged his shoulders and said he didn't know! Not the answer I wanted to hear when I'm being prescribed prednisolone, alendronic acid, etc! He wanted to put me back on amitriptyline for a second time to help me sleep....despite me saying that wasn't an issue, and despite it not helping previously and leaving me like a zombie each morning. So although I respect him as a professional and so called expert in his field, please don't expect him to be the miracle solution to your condition because you'll just be another patient on his very long list!

[ValFF53]

My friend saw Professor Das Gupta (she lives in the North West) for a second opinion.

I went with her to her two appointments (NHS) and was really impressed with him. I am a qualified nurse with PMR and have had personal experience of dreadful Rheumatologists.

My friend’s second appointment was brought forward because he was retiring from his NHS post and, I believe, concentrating on research. It seems that he is still seeing patients on a private basis, though.

I wish you well.

[Hildalew]

Reading the variety of comments about Prof Das Gupta, I was reminded that some time back, probably over a year, some people on this forum were writing very positively about a specialist in Chichester. It was so enthusiastic, and I was at a comparatively early stage in my PMR journey, that I wondered, for all of about 5 minutes, whether I might just move to Chichester!

Of course, I've no idea where you are but if it's not too far perhaps you could check him out?

[PMRpro Ambassador in reply to Hildalew]

Rod Hughes at Chertsey is very good too if you are anywhere in easy reach of the M25