Finding a CLL specialist?

Hi all

As I've only recently been diagnosed with CLL I really thought my treatment path was pretty much dictated to me - i.e. the doctor I saw at my local hospital is the same person who will lead me through the rest of the CLL maze!

I am a bit naive/inexperienced when it comes to the world of healthcare but is it possible for me to ask to be referred/seen by a CLL specialist (I'm assuming the doctor I've already seen at my local hospital is not a CLL specialist but I've only spoken to her for 15 minutes and, to be honest, I wasn't really aware of what to ask her!)?

I have read that there are advantages in being seen by CLL specialist, as opposed to a cancer/haematology specialist, so it sounds as though this may be something worth persuing.

I live fairly close to the Christie hospital in Manchester where I guess I could locate a CLL specialist - I'm just not sure how to access their services (or even if it's possible without a referral)!

Any pointers/advice/experiences would be, as always, much appreciated.

Many thanks.



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20 Replies

  • I did just that when my specialist retired. There are CLL specialists and there is one in Manchester. CLLSA used to have a list of specialists but they dropped it for reasons that I don't know. I did some research and found my specialist at Liverpool. I asked my GP for a referral as a second opinion - which might be a good way to start - and then asked if he would take me on. Fortunately he said yes and I am very happy. The CLLSA web site has a number of webinars and videos about patient meetings and these will tell you who is who in a given area. The recent one in Liverpool had my specialist and one from Manchester who seems to be very well versed on CLL and how to manage it.

    So to summarise - first find your specialist. Then ask either your GP or your current consultant for a referral as a second opinion - you are entitled to one of those under the NHS I am sure. Sometimes the CLL specialists will act as a backup to your own consultant also.

    Dunno if that helps

  • Hi

    That helps enormously - thanks very much!

    I realise we're currently pretty much stuck with our CLL once we have it but, until a cure is available, I'm determined to be as proactive as I can in making sure I manage my condition as much as possible!

    Thanks very much for your advice - I'll be speaking to my GP as soon as possible for that referral! 😊

    Have a great weekend.

    Keep well!


  • You are welcome. Of course we have to learn to live with CLL. I was diagnosed in 2012 and have been on wait and watch since. It can be frustrating to be told on the one hand that you have cancer and on the other that they are not going to treat you. It is one of the most common adult leukaemia I think but even then there are not that many new cases each year (between 3,000 and 4,000 I think) so many doctors are not that familiar with it. I think many CLL patients will know more about it than their GP - I know that is true for me and my GP is very good. The CLLSA web site is a good source of information but in the end the main thing is to be aware but certainly in the early stages not let it get in the way.

    Take care

  • Hi debs hi was diagnosed with all 2011 had treatment stayeda way 18months came back was treated again did not work as well this time court pumonia then was told about a trail going on at the christe hospital in Manchester a new drug called apt 199 clad I did I'm in remission now my consultant was named Dr bloor brilliant Dr and a I would recommend the christie to anyone lovely hospital they can't do enough for you ring them up or tell your go to referr you if yo go on daily mail web site my story is on their ok good luck Doug

  • I would most Drs don't know there arse from there elbow

  • hi Debs I was diagnosed this year from a blood test taken in 2009 when enlarged nodes were detected in my 3 yearly breast screening , I have a ill mannered haematologist with no bed side manners that is very rude so after being on here and speaking to people I asked my Dr just 3 weeks ago to refer me to Professor Andrew Pettitt at Liverpool hospital( I read up on him on line ) and received my appointment yesterday for the 27th may , im now writing my list of questions as the 1 at Lancaster Hospital has told me nothing other than the Wait & Watch . You have a right to see who you want Good Luck julie

  • Andrew is my specialist and he is very good :)

  • You may need to ask for a referral from your current haematologist rather than GP. S/he cannot refuse. I am in Greater Manchester and did that.when my symptoms became severe and no treatment was forthcoming despite them. Very glad I moved to Christie's.

  • Morning everyone!

    Thanks for all your input regarding CLL specialists - it's just proved to me how much I don't know!!

    I'm so glad I asked the question, otherwise I'd simply have sat back and waited for my next 15 minute session with my local haematologist (the same one that told me my lymphocyte count didn't show up on my blood test results because "the machine was happy when it found high white cells....It doesn't bother fiddling around to separate the types of cells"....!?).

    Your information and advice has spurred me into action (or at least it will tomorrow when everyone is back at work!). I'll be making an appointment with my GP to get that referral to a local(ish) specialist!

    I can already see that this site and its fantastic members/contributors is going to feature highly in my CLL life....and I'm already grateful for that!'s a bit cloudy out there but it's still a beautiful world. I'm going to get out and forget my CLL for a while - life can be too short, as we are all only too aware, so I'm going to grab what I can and enjoy life!

    Hope you all enjoy your day, wherever it takes you!

    Thanks again...

    Keep well.


  • It is a bit cold and windy here in Wales but it is still a beautiful day - enjoy :)

  • There is something else I just remembered which might be of interest and comes from Andrew. That is what to ask your specialist to see if they are on the ball with CLL.

    The first is to ask them to explain 17p deletion, and the second is about access to clinical trials.

    One of the important things for CLL patients is access to clinical trials - there are a lot going on since there are a number of new treatments, CLL specialists will know all about these and who is running them and will be able to access them.

    Do a search on CLL 17p deletions since my understanding is that it is an important marker for early treatment. I am not a medical professional so that is my understanding.

  • Hi again, Scruffy Duck.

    Thanks for the "top tip" - I will definitely do some homework and make sure I'm armed with some key "test" questions once I get to see a specialist!

    Thanks again ☺


  • Deb

    Please let me know how you get on. I am exactly the same position having been told lots of different things by lots of doctors at my local hospital so much so that I am confused. One told me I needed to start treatment and the other that I did not. God knows who is right and I suspect I maybe meeting my maker sooner rather than later. If I don't get this right.

    Watch, wait and worry is frustrating I know but like you I do need some answers.

    Best of luck


  • Good morning, Dave.

    Hope you are well this morning.

    Just a quick note to say I will definitely post updates here regarding my efforts to access the services of a local CLL specialist - fingers crossed, eh?

    Watch this space! 😉

    Keep well.


  • Hi Deb

    How are you getting on?

  • Hi

    Thanks for asking!

    I've only managed to get as far as making an appointment with my GP, who I plan to ask for support with a referral to my nearest CLL specialist (at the Christie Hospital in Manchester).

    Like many people, I have to wait for an appointment and the soonest available date (for both GP and me) is 2nd June (!).

    I'll be able to update you when I have some news...fingers crossed!

    Hope you are staying well.

    The sun is shining on us here - hope it's shining on you too! ☺

    Will keep in touch.


  • Hi again

    I was just wandering through some of my older posts and spotted this exchange of comments (when I was asking about access to CLL specialists) from some time ago.

    You asked how I was getting on, back then, but only today have I heard from a CLL specialist at the Christie Hospital and I have my first appointment later this week!

    I've been plodding along on W&W, with steadily increasing white cells (ALC now 119) and enlarging nodes - no weight loss or night sweats - still going about my normal daily life and feeling fine. I've been visiting my local hospital haemo team for 2/3 monthly check ups but have seen 3 or 4 different docs...whoever is on duty on the day! The last doc I saw suggested he'd refer me to an expert after I asked the question - seems he was true to his promise!'s taken a while for me to get to the specialist but, it seems to me that I'm being referred at the right time - let's see how things go from here!

    Hope you are well.

    Take care


  • Good news Deb24. Let us know how you get on.

    Sue uk

  • Great. Update us please


  • June 2nd is not so far off now. I hope all goes well. Sun is shining here in the Welsh hills :)

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