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I have recently been diagnosed with CML and wanted to know if there are some recommended Consultants in the UK ( ideally in the North). I have read that not all general haematology consultants are clued up on the latest developments as this tends to be a rare type of leukaemia. Can anyone recommend anyone NHS or Private? Thank you for your help

The shock of diagnosis is now a distance memory to me. I'm one of the world's longest survivors :)

IF you're going to have to have a cancer than this one is not too bad in the great scheme of things.

Depends really where you mean by "north"

I would suggest / stress that you want to get your GP to refer you to one of the specialist units and go there rather than "just" any old general hopsital or any generalist haematoligist. I'd also urge you to stay at a specialist unit no matter what and even if you can afford private healthcare. Believe me with something like CML you really want access to the best and the latest and in my experience, that can best (and only) be provided at one of the centres of excellence. These centres of excellence also have proper facilities for testing blood and again you'll read about blood testing on this web site and come to understand how important that is.

I'm alive thanks to going to a Specialist Centre of Excellence and coupled with a stubborn determination and a strong measure of good luck. Also because of massive funding support from Leukaemia Research as I went on to a load of very very very expensive trial drugs and treatments that weren't available generally via the NHS and quite frankly even if they were wern't licenced or approved by NICE and were not affordable to any other than someone who had a spare £200,00 per annum. Note: also not "approved" by the likes of my private health plan (BUPA)

Though be clear I was diagnosed in the "bad old days" when treatment options were more limited and hence I've been on about every Leukaemia Research clinical trial there's been in the past 20 years and as a result I'm here today and well and despite having been told I'd not see out 3 months when I was diagnosed way back when...

Now I'm on one of the new generation wonder drugs you'll read about on this forum: imatanib or glyvec. Nowadays thankfully that one is a treatment of choice and approved by the NHS.

I'd not hesitate to recommend my own consultant:

Dr Smith at the specialist unit at Leeds Teaching Hospitals - St James

or Newcastle Hospitals Royal Victoria Infirmary (RVI) specialist unit where there's the guy I call "Mr Glyvec" and whose name I forget! Might be Professor Jackson??

If you're GP is pratting about and/or reluctant to push you to a specialist unit then just keep plugging away. Keep on at him. Never forget it's your health and there's no one on this planet that's going to be more motivated to get what you want than YOU.

In my case I had peculiar features and was gravely ill when I first presented so I was blue lighted to Leeds. I may even have complained that I was going so far away... now I know better though.

All the best and you know where we are now when you've got over the initial shock and think of other things you need to know.

Hi and welcome to this forum. I agree with Darley that before anything you should take a deep breath and consider your options which, for the vast majority of people diagnosed in chronic stage, are good.
Regarding how to access a haematologist who is based at a centre of excellence (and therefore 'clued up') I suggest that depending on which part of the North you are in, you try those that Darley has mentioned: Dr. Graeme Smith at St James Hospital Leeds, Prof. Stephen O'brien at Newcastle. If you are nearer eto the North West then Prof Richard Clark at Royal University Hospital Liverpool. All are excellent centres for CML and will be able to guide your choice of TKI therapy depending on your personal preference and any possible co-morbidity.

You can access very effective oral therapy called tyrosine kinase inhibitors (TKIs) namely imatinib/Glivec (1st Generation); nilotinib/Tasigna (2nd Generation) via NHS England as 1st line treatment. There may also be eligible for a clinical trial expressly for newly diagnosed who have not yet started treatment. This may be a good option to access other 2nd and 3rd generation TKIs that are currently only available in England via the Cancer Drug Fund - and this requires you to try at least imatinib/nilotinib first before trying dasatinib or ponatinib.
So there is no real need to 'go private' as the most effective and specialist treatment you can have for CML is available via the NHS.

If you would like the contact details of any of the above CML specialists then let me know and I will email you privately.

Meanwhile, good luck and try to read as much as you can about CML- if you have any questions at all- no matter how basic- then please ask on this forum and we will try to help.

Sandy