CLL Support Association

Doctor support

Does anyone else out there have trouble getting support from their family doctor? I guess what I mean is empathy. I find my family doctor does not seem to care about the stress of living with cll on a day to day basis. I often feel like I’m begging for understanding. I’m still working and when I go to doctor to deal with regular illnesses (I’ve had a cough for 6 months) she doesn’t seem to get the amount of effort it takes for me to function day to day. Would love to hear feedbCk on advocating for self when we are in watch and wait and don’t appear to have cancer.

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Sorry, I can sympathize with you, but I don’t have that problem. I am sure you will find others in the group that might help you out with this issue. Have you tried telling the doctor exactly what you just wrote to us? Depending on what they would say, it would at least give you a clue as to whether they would be willing to change their attitude. Good luck with this. A caring and supportive GP is a real plus in our journey.


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Hi Hmcardle, experience tells me that there’s three key reasons for this attitude amongst some GP’s/family doctors quite apart from the time restriction consideration;

1/ they are primed more to acute conditions and see CLL as the haematologist’s remit

2/ they have little experience or in-depth understanding of CLL because it is a relatively rare cancer and some GP’s only see a few cases in their career

3/ they have poor empathy skills generally or/and are professionally burned out!

Sometimes there’s a combination or an element of each.

I’ve known my GP for decades and he’s a challenge but frankly I’m a pretty assertive patient and he expects a fight back from me if I’m unhappy. I never disappoint him! We’ve had some very interesting and combative exchanges which I won’t describe on this post because you haven’t restricted it to the community. Many GP’s preserve the power inbalance at all costs and it’s hard to engage with them on a human, vulnerable level.

I’ve discussed this emphasis on the acute with my GP and he admits that he sees my CLL as the haematologist’s business. Chronic is long term and they often just don’t have the answers to the day to day issues we endure. Frankly they just don’t understand them! Problem is my haematologist is like many and doesn’t connect other health maladies to the CLL which may be what is happening with your cough. However, primary and general care is the province of your GP and they should be investigating cause quite apart from the haematological malignancy.

Some doctors simply do not treat holistically. They see themselves as having a diagnostic - treatment role and the psychological - social element is something the patient has to manage. We are very lucky indeed if we manage to get a GP who can combine all these qualities and who has specialised in haematology too during training.

My advice is to be very focussed with your doctor. Spell out exactly what you want and need. Be clear that you want this cough investigating. It may be your family doctor will never allow a close, empathetic relationship to develop and you’ll need to decide whether to part company and find a more responsive one. The positive thing is you seem to have an excellent specialist and that really is worth it’s weight in gold!




i actually moved Gp practice for similar reasons, and when I moved house I made sure I stayed within the practice catchment area.

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I can totally relate to this. It’s always “if I had cancer this is the one I want”. Makes you angry and feel a real time waster.


It’s a difficult situation I find, but my GP surgery was quite supportive at the beginning before I’d visited the haematologist. In the early days I had a few health issues and they acted quickly in getting further investigation done but as has been said I think their knowledge is limited so they rely on the CLL consultant to pick things up. I’ve always found them to be suitably concerned when any new thing Ive noticed/experienced is worrying me. I guess it’s just down to personalities sometimes.

It’s the W&W I find more difficult to deal with on my own sometimes, but it is getting better. You do need your cough investigating though - as that will help you in your function day to day. I work four days but don’t do anything else other than work on those days (luckily hubby is retired and prepares meals) -and my fifth day is usually spent recovering! Good luck with your GP 🙂


Time to look for a new doctor!

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