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?
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.
Here is the mentioned LIST OF FLAIR SITES
Royal Marsden Hospital
Royal Devon and Exeter Hospital
QE Hospital Birmingham
Cheltenham General Hospital
South Tees – James Cook
Castle Hill 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
University College London Hospital
West Middlesex University 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
Birmingham Heartlands Hospital
Good Hope Hospital
Sandwell General Hospital
(Royal Hampshire County Hospital)
Queen Alexandra, Portsmouth
Royal United Hospital Bath
Salisbury District Hospital
Southampton General Hospital
Derriford Hospital, Plymouth
Gloucestershire Royal Hospital
Royal Cornwall Hospital
Torbay District General Hospital
St Bartholomew's Hospital
Royal Surrey County 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
Watford General Hospital
Musgrove Park Hospital
Milton Keynes Hospital
Surrey and Sussex Healthcare
Worcestershire Acute Hospitals
Aberdeen Royal Infirmary
University Hospital of Wales, Cardiff
Glan Clwyd 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
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
Queen's Hospital Romford
Peterborough City Hospital
New Victoria Hospital Glasgow
Do you know if there running the clarity trial at the same hospitals?
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.
Thanks. I couldn’t work out how to do it.
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.
Dr Mike Leach and Dr Alison McCaig are both specialists and take clinics at the Beatson in Glasgow.
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.
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.
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.
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?
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.
Good one. Will give it a go.
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.
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
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!
How did u contact Dr Leach? I really want to get that second opinion.
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