CLL specialist in Scotland? - CLL Support Assoc...

CLL Support Association
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CLL specialist in Scotland?

Sitting at my thinking spot tonight I wondered. Are u in Scotland? Do you see a specialist in CLL? If so would you recommend him/her?

Thank you

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There was a post from Adrian Uk 11 days ago with a list of hospitals involved in Flair trial. Assumption being that involvement means a good knowledge of the CLL/Sll. I received all my treatment at Kirkcaldy and am on the Flair trial.

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Here is the mentioned LIST OF FLAIR SITES

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Royal Marsden Hospital

Royal Devon and Exeter Hospital

QE Hospital Birmingham

Cheltenham General Hospital

South Tees – James Cook

Addenbrooke's Hospital

Castle Hill Hospital

Christie Hospital

Diana Princess of Wales

Kettering General Hospital

Leicester Royal Infirmary

Northampton General Hospital

Nottingham University Hospital

Calderdale Royal Hospital

Royal Liverpool Hospital

Scunthorpe General Hospital

St James's Hospital

Buckinghamshire

University College London Hospital

West Middlesex University Hospital

York Hospital

QE Hospital Gateshead

Bradford Royal Infirmary

Harrogate District Hospital

Huddersfield Royal Infirmary

Manchester Royal Infirmary

Blackpool Victoria Hospital

Countess of Chester Hospital

University Hospital Aintree

Doncaster Royal Infirmary

Grantham and District

King's Mill Hospital

Lincoln County Hospital

Pilgrim Hospital Boston

Royal Hallamshire Hospital

Rotherham General

Birmingham Heartlands Hospital

Good Hope Hospital

Sandwell General Hospital

Hampshire Hospitals

(Royal Hampshire County Hospital)

Poole Hospital

Queen Alexandra, Portsmouth

Royal United Hospital Bath

Royal Bournemouth

Salisbury District Hospital

Southampton General Hospital

Derriford Hospital, Plymouth

Gloucestershire Royal Hospital

Royal Cornwall Hospital

Torbay District General Hospital

Hammersmith Hospital

St Bartholomew's Hospital

Worthing Hospital

Royal Surrey County Hospital

Ipswich Hospital

Churchill Hospital

St George's Hospital

Croydon University Hospital

King's College Hospital

Royal Derby Hospital

University Hospital South Manchester

Russells Hall Hospital

University Hospitals of North Midlands

George Elliot Hospital

James Paget University Hospital

Colchester General Hospital

Epsom and St Helier Hospital

St Richard's Hospital

Bristol Haematology & Onc

Basildon Hospital

Watford General Hospital

Musgrove Park Hospital

Milton Keynes Hospital

Surrey and Sussex Healthcare

Worcestershire Acute Hospitals

Singleton Hospital

Ysbyty Gwynedd

Aberdeen Royal Infirmary

University Hospital of Wales, Cardiff

Glan Clwyd Hospital

Raigmore Hospital

Wrexham Maelor Hospital

Royal Gwent Hospital

Western General Hospital

Beatson Oncology Centre

Princess Royal University Hospital

Nevill Hall Hospital

Victoria Hospital, Kirkcaldy

Borders General Hospital

NHS Lanarkshire

Salford Royal Hospital

Royal Alexandra Hospital Paisley

Queen Margaret Hospital, Dunfermline

Belfast City Hospital

Pennine Acute Hospitals NHS Trust

Craigavon Area Hospital

University Hospital Coventry

Altnagelvin Hospital

Queen's Hospital Romford

Peterborough City Hospital

New Victoria Hospital Glasgow

Len

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Do you know if there running the clarity trial at the same hospitals?

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I don’t. This thing is like a state secret. Last time I asked me consultant he said the trial was over (?). I was the one who told him it wasn’t.

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Thanks. I couldn’t work out how to do it.

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Last I heard was that the only CLL specialist in Scotland is at the Beatson Centre in Glasgow. I'd be delighted to hear we had acquired more.

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Hi Flabel,

Dr Mike Leach and Dr Alison McCaig are both specialists and take clinics at the Beatson in Glasgow.

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Hi Elizabetha

I have tried to find Dr McCaig’s contact email as she seems to also work for Glasgow university and this just got returned to me.

At this point I’m considering going to one of the consultants in either London or Birmingham, I just want to talk to someone that really knows what’s going on with my body.

On the other hand I would love to move on from the consultants I currently see. So someone local would be amazing. Even if it is in Edinburgh, Fife or Glasgow.

Not sure if I’m allowed to contact the Beatson personally or if would have to be referred by a doctor.

I’m confused and a bit lost tbh.

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Hi Flabel,

My haemotologist referred me, I think that this is the best way to arrange a consult. It didn't take long and I saw Dr McCaig at the Beatson in Glasgow. She was very approachable and asked if I wanted my case to be transferred to her however she confirmed the prognosis and treatment options already given to me by my own haemotologist at the New Victoria infirmary in Glasgow.

I decided to remain with him as we had built up a good relationship.

I would suggest that you ask to be referred for a second opinion and take it from there.

Best of luck.

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Thanks huni.

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It’s important to undetand there are different levels of specialist.

1. Any consultant haematologist will have at least had some training on CLL. But they may not see many patients with this condition and may or may not be 100% up to date or sympathetic to the challenges we face.

2. A consultant with a self declared special interest in CLL who makes an effort to keep up to date and may be part of the UK CLL forum organisation and or attend other international conferences.

3. Someone who has done clinical trials in CLL (hence the FLAIR list). Personally I wouldn’t rant to be under the main care of someone who wasn’t at this level at least (or a memeber of a team that works with them).

4. Someone who has published in CLL. This list is inevitably smaller.

There has been a lot of controversy about providing any list of experts, but we have the permission of the people running the flair trial to share the list of their sites.

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Hi Adrian

And thank you for all the help you have provided me. I would’ve never know of the trial if it wasn’t for you.

And this is one of the reasons I’m so reluctant to trust my current doctors.

I have requested to my consultant to be entered as a candidate for the FLAIR trial but they seem to just ignore my request.

I feel my hands are tied otherwise. Am I being stupid?

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Not at all. It’s your consultant who is being unhelpful to put it politely. They think you don’t know your rights. It’s really simple. Book to see your GP (I hope you have a good one you know well and see regularly) and say you want a second opinion for your CLL management and ask them to refer you to the nearest FLAIR site for that. You can even google the hospital and get the phone number and see if you can speak to the research coordinator to make sure you know who to be referred to. But if your GP addresses the letter to the Haematolgy department and explains you want to be considered for a second opinion and possible FLAIR enrollment it should be fine.

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Good one. Will give it a go.

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By the way consultants won’t reply to patient emails typically. So maybe just get your GP to refer to the doctor you want to see.

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Ok. Thanks

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In my experience asking your hospital consultant is normally the best way as once your under a haematologist your Gp tends to avoid getting involved but worth a try

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I sought out a second opinion years and years ago and it was Dr Mike Leach at the Beatson in Glasgow. Glasgow is not in my health board area and to be honest I feel it put my haematologists nose out of joint that I went elsewhere 🤷🏻‍♀️ He basically confirmed I was being taken care of in the right manner and sent me back to my own consultant but I felt much better knowing I had been double checked!

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Hi huni.

How did u contact Dr Leach? I really want to get that second opinion.

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