Professor Dasgupta at Rettondon meet today - what a good talk he gave...

[Telian]

Wanted you to know...

Professor Dasgupta was guest speaker at the Rettondon Meet today and gave an excellent talk on the illness, he gave a lot of detail yet made it easy to understand. This was the first meet at Rettondon and he expressed his delighted at such a good turnout, there must have been 40 people in the small church hall.

I didn't know he's spent over 40 years studying and working on GCA/PMR. He did his MD thesis on the subject and as he began to realise how little known it was he made it his life's work to raise the profile - but not without difficulty. Health Service opinion at that time was it didn't warrant funding as prescribed steroids were all that was necessary - there were other more needy conditions. The need for ongoing management of the illness was not accepted as a need for funding. It frustrated him as in his words 'GCA is a medical emergency'. In the meantime patients were losing there sight and he wouldn't accept that - he constantly strives to raise the profile and in 2013 he introduced the fast track system in Southend, I was lucky to be a recipient of that the following year when I was diagnosed, it saved my sight - the rest is history as they say and this year is the 10th anniversary of PMR/GCAuk with fund raising week this week.

I felt particularly pleased, as the majority of people there were early on in their illness, and thought how lucky they were to have the opportunity to hear such detailed background to it. Some, as on here, had never seen a Rheumatologist and were managing the illness themselves after just one visit to their GP and a prescription for Prednisolone! - one chap upped his pred to 80mg because he felt so unwell and was worried about his sight - had no idea what he should do next. Professor said he had no problem with GPs managing the illness as long as they had an accurate diagnosis first from a Rheumatologist, he also said that you can ask to be referred if your GP is not doing so - overall it was really good in understanding the difficulties in getting diagnosis of this complex illness. He also said it is no longer necessary to have a TAB as an ultra sound is all that is needed to get the diagnosis.

If ever you get the chance to listen to one of his talks then go along, he makes it so interesting.

[SheffieldJane]

Wow! Lucky you, how interesting. Especially the bit about an ultrasound being sufficient for diagnosis and a Temporal Biopsy not being needed.

[Telian in reply to SheffieldJane]

Thank you SJ - I think so too - and I knew that would be of interest - my diagnosis was confirmed by him via ultrasound as my TAB was negative - it makes sense when TAB results can be so conflicting and not a nice experience either. My son came with me today and came out saying same as you didn't realise how lucky I was to have him as my rheumy after listening to what others have to deal with.. I could have listened to him all day, the way he explains how and why is so interesting...

[Mikb in reply to Telian]

My ultrasound was normal but my TAB showed I had GCA. They tried all the uninvasive procedures first - which should be the norm - before the invasive procedure. So I agree with him. Try the ultrasound but if you still believe the patient has GCA and all tests come back normal, go TAB.

[Telian in reply to Mikb]

Opposite way to me, and as I'm now finding out how reliable was the ultrasound - see my reply to SnazzyD... I get the impression he wouldn't put a patient through it now - he goes heavily on symptoms even to the point of saying bloods don't mean anything in comparison...it's like a moving target...

[SnazzyD]

Thanks for reporting back. Sadly the ultrasound requires technique different to the normal US and therefore teaching. It seems that there aren’t many who can do it in the U.K. I was told that in my hospital, a so called ‘centre of excellence ‘ don’t do it for diagnosis for this reason, but they do for monitoring. Huh?

[Telian in reply to SnazzyD]

You are right, at my consultation last month he had two students, it's a teaching hospital, and he was teaching them how to use the US on me. I know his registrars do carry out US in clinic but I believe he is the only one that gives the results at the same time as the scan - the others require a second opinion either by him or another doctor in the team or both - I've only ever had him do mine so got results immediately.

[Marilyn1959]

Gutted. I live two miles away from Rettendon and didn't know about the talk. Where do you find out about these things?

[Telian in reply to Marilyn1959]

Basically I'm a nosy parker...and I was going to ask if anyone might be going but I wasn't well and I never did it - sorry - you know what I mean... info is always on the hospital noticeboard in rheumy. I just rang the number. A fellow sufferer has just taken over Southend supporters group and as she lives in Rettondon so organised that one. Through a show of hands Rettondon will continue 3 monthly, Southend will be 6 monthly. Her name is Pat Fedi, details are on the back page of the pmrgcauk newsletter, comes under Eastern England her contact details are:

[e-mail]

and she will be only too pleased to add you to her contact list - she will let you know via e-mail details of the next meet dates/venues etc We met at the Rettondon Memorial Hall this time and I think she will use that again. I only went because at the Southend meet she said Professor would be there, I will continue to do both, if possible, as it isn't far from me plus I accepted when she asked for volunteers to help on the day - teas/coffees etc - if she needs it - as she currently relies on help from family and friend. The speaker at Southend was a Consultant Physiotherapist but don't know who will be invited for future meets at this point. It costs £3 and you get teas/coffees/cold drinks and biscuits! plus a raffle to help raise funds for the cause...plus you get to meet fellow sufferers...it's good.

[Marilyn1959 in reply to Telian]

Thanks Telian.

[DorsetLady PMRGCAuk volunteer in reply to Marilyn1959]

This was posted earlier in week - many times!

healthunlocked.com/pmrgcauk...

And it’s a Pinned Post - on right of screen.

[Telian in reply to DorsetLady]

I've seen those before but never saw anything local at the time so stopped looking - in between I'd found another source - I'm not sure if there was a gap in meets in my area from the previous organiser moving on.. thanks for the reminder.

[Marilyn1959 in reply to Telian]

I think you may be right about a gap. I vaguely remember now that S4ndy and I were trying to contact organiser around July? last year and had no response. However I certainly did not pursue at later date. Will mow look again. Thanks for the info.

[Telian in reply to Marilyn1959]

At least you'll get the info direct to you - that's the only reason I rabbitted on about the setup - Pat was new and reliable I thought..

[DorsetLady PMRGCAuk volunteer in reply to Telian]

If you “ belong” to a local group then yes you should get direct email, and the organiser usually raises a post on here. But as Kate put out the notice about this meeting perhaps you have a problem locally. She usually only puts out a post about an event organised nationally.

Might be worth checking with the charity itself or look at their details of events.

[Telian in reply to DorsetLady]

That makes sense, I felt like a doh! when you pointed out the pinned notices but knew I'd looked...I'll mention it to Pat, she might find it a bit overawing as the take up last week was amazing only going local! think she's very brave particularly having this condition. Many thanks DL.

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Yes she is, especially if it’s a large group and with an speaker etc to organise.

The two nearest ones I attend are both quite small and very informal, just a chat and a cuppa, but even those still take time and effort to organise.

[Telian in reply to DorsetLady]

That's nice, the one in Southend is more informal and I did like that.

They are proving popular, at the Southend one Pat thought she was only getting 5 'booked' people but ended with about 20, they must have seen the local advert in the hospital - I'd be horrified if it went national. Depending on who the speaker is people will travel miles.

Thinking more about having speakers I get the impression she thinks she has to have one - as long as she has an agenda that needn't be the case - I'm sure she'll get there.

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Yes. Think sometimes people just want a chat, and a bit of reassurance, and if there aren’t too many people you can usually manage to speak to all of them individually. If it’s a lot of people and a speaker you maybe don’t get that.

[Telian in reply to DorsetLady]

You are right they do - and he was inundated with questions and couldn't answer all as time ran out, that was the only down side..

[PMRpro Ambassador in reply to Telian]

Celtic was saying a bit back that one meeting the speaker had to cancel at the last moment - so they had an unplanned mix'n'chat and many people said how much they had enjoyed it, could they have more! That is the point really - so you get to know others with the same problems - the same as the forum. That's how you realise that no, you are NOT alone.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

So agree - and I think you come home feeling more confident that you can get through this illness. Plus you also learn perhaps what to do or more importantly what not to do from others who have been there. No matter how knowledgeable or considerate a doctor is, very often they haven’t been ‘there’!

[Telian in reply to PMRpro]

That rings a bell that Ilkley and Leeds were combined...thank you.

[S4ndy]

Me too, I am close to Rettendon, didn't know about the meet either!

[Telian in reply to S4ndy]

Hi S4ndy - see my reply to Marilyn - cheers.

[DorsetLady PMRGCAuk volunteer in reply to S4ndy]

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

" he also said that you can ask to be referred if your GP is not doing so"

You can - but in many areas it will be turned down by the referral committee. It has happened to a few people already, one had query GCA. And unless you can afford to go privately - you are stuck.

The TABUL study comparing TAB and U/S showed it was comparable in getting the result - so if you can have it U/S is better as they can see more in many ways. And even if they don't find it with U/S by a trained person who is doing it regularly (that is the main problem) there is no guarantee they will find it doing a TAB. Which is why symptoms and history rule. I had colleagues in the vascular lab who said that it took a good 6 months to learn each new technique and you had to be doing them regularly to keep your eye in. One said she even found it hard for a few days after being off on holiday!

[Telian in reply to PMRpro]

Didn't know that about referrals, he was asked if it was a postcode lottery and he didn't seem to think it was, not sure though, only that he said he has patients come to him from varying parts of the UK eg North Wales and 'quite a few' from Kent but who knows if they are private, I shall ask my own GP what he knows..

I agree re the TAB see my reply to SnazzyD...

[PMRpro Ambassador in reply to Telian]

I was under the impression that he had been told unofficially there are patients who have had to participate in the lottery of referral to such committees. I suspect Welsh patients may be private. Kent need not be - until recently it was your right in the UK to ask for referral to anyone of your choice anywhere in England. The rheumy service in Kent is awful - one lady I know used to travel to Leeds. Where, after a few years of a reluctant diagnosis of PMR (by local rheumies) and later possible GCA that it was too late to treat (by BD) but awful symptoms, she finally got the correct diagnosis of anklylosing spondylitis and appropriate drug treatment.

[Telian]

I honestly don't know a great deal about committees but out of personal interest I will look into it - I was under the impression that you could still ask for a referral of preference to anywhere, has that changed as you say 'until recently'? The fact that someone raised that question in the meet made me think you could but again will find out...

It is terrible what some people endure - we are thinking of moving some time in the future and it is my biggest fear the health care elsewhere...

[PMRpro Ambassador in reply to Telian]

A lady in the NW with ?GCA was told her rheumy appointment would be several months so asked for a referral to a particular rheumy who was recommended. She was told her GP's referral had been seen by the referral triage and been rejected as unnecessary. I have heard a couple of other similar experiences. So effectively - no, you can't necessarily see who you want any more. And if your GP referral was poorly worded you may find yourself left with "only" GP care. Which is fine if it is one who has some idea...

You have no choice in Scotland or Wales (as far as I know), you are referred to the locally stipulated service. Someone I know lives just outside Dundee but in Fife. For most of her referrals she is sent to Ninewells hospital, the nearest hospital and easy to get to, but last week was told that for one particular thing she must go to Kirkcaldy - much further and almost impossible for her in her state of health.

I have a list of regions in the UK I could not possibly live if we were to return to the UK. Our younger daughter has told us we couldn't live in the flat she has (we bought it and she is a tenant) as the local medical services are either appalling or too far away (she's a paramedic there so knows the score).

[Jackoh in reply to PMRpro]

Can you say what regions you wouldn't live in or is the list too long?!

[PMRpro Ambassador in reply to Jackoh]

Kent and Wales are probably top of the list. The West Country doesn't really do too well the other side of Bristol! My daughter refuses us permission to live in much of North Yorkshire.Then there are the other remote rural areas where access to hospitals is a bit slow. Here they use helicopters - no such luxury for most of the UK. The south in general is on the list as much as anything because I seriously doubt we could AFFORD to live there. We do have plenty of friends and more than half the family are there so it has appeal.

[Jackoh in reply to PMRpro]

Thanks-for those reasons perhaps shouldn't have left Surrey!!

[Telian in reply to PMRpro]

Bit of a minefield - we would be in West Yorkshire, what do you know about there?

[PMRpro Ambassador in reply to Telian]

Depends where you are. You have Leeds and Sarah Mackie's department for rheumatology - which extends to Otley I think. There are medical services all over the place - whereas North Yorkshire and the moors are 45 min to decent hospitals. Which is why PM daughter says no! She approved of Guisborough though as it is handy to James Cook and about half an hour from her. The criteria for our age group are fairly clear: ease of access to a decent hospital whatever the weather. Whitby's hospitals are variable - James Cook (good) and Scarborough (should/may be in measures), both 40 mins even on blue lights and often the moors and coast roads are impassable with snow/ice in winter!

There is a group meeting in Ilkley and Leeds - quiz them!

[Telian in reply to PMRpro]

Will be in Tingley, postcode is Wakefield but next door to Leeds. I've heard the name Sarah Mackie I got the impression she is good? My son often gets referred to the Spire private hospital but as an NHS patient in Wakefield, pretty central really North Yorkshire is too far anyway and with the moors etc - oh I remember those harsh winters well and is one of the reasons I am not keen to move - it's too bloomin cold - they call me a southern softie now - you do acclimatise after 30 years though..

I'd seen that Ilkley/Leeds is a joint meet so will try to find out, thanks for that - we're only thinking about the move at the moment but No 1 son says we should be nearer - it makes sense in some respects...

[PMRpro Ambassador in reply to Telian]

The local ambulance service has some cracking paramedics Tingley is handy for the motorway to Leeds...

A uni friend lived in Hanging Heaton and one of my YAS friends lives in Cleckheaton.

[Telian in reply to PMRpro]

I get the nod, so could be meeting your lovely daughter - or not - don't intend to need one...and you're right Tingley is handy for most networks. Just got to find a lovely, kind, patient GP - there are two of us to contend with OH is worse than me by far...

PS what is YAS?

[ConventCassie]

Is there any way you can record his talks and we can listen across the Pond?

[DorsetLady PMRGCAuk volunteer in reply to ConventCassie]

Hopefully it may appear on this -

healthunlocked.com/pmrgcauk...

[ConventCassie in reply to DorsetLady]

Awesome! I’ll keep an eye out. Many thanks.

[Telian in reply to DorsetLady]

If he agrees to make a recording that would be good and I think he may think so too - watch this space..will gently drop that one next time I see him..

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Good idea!

[Telian]

I definitely know he likes to spread the word and that would be an ideal platform - reaching the parts others cannot - watch this space - we may be budding directors! ha ha...