Confused

[Safel]

On 31 August my doctor told me he was 99% certain I have CLL and sent an urgent referal for a heamotology appointment requiring a 2 day response. This got change to an appointment requiring a 14 day response. Now this has been deleted. All this activity has taken place in the NHS app without any contact with myself beyond the initial doctors appointment. I assume I need to go back to my doctor and start the process again. One way of managing NHS performance stat!!

[Newdawn Administrator]

I suspect that your GP referred you under the ‘2 week wait’ cancer protocol pathway initially. However, as I’ve found (certainly during lockdown), referrals are reassessed and re-prioritised en-route in the health service and it sounds to me like your referral has been recategorised as more routine.

This is entirely my impression of course from what you’re describing.

The reality is that even diagnostic, first consults for CLL may not be given urgent priority because of the chronic nature of them. I recall waiting several weeks to see a haematologist for a confirmatory diagnosis.

It’s of course different if there’s associated, urgent issues attached to it like autoimmune problems etc. If you are pretty asymptomatic and the main issue is lymphocytosis (high lymphocyte level), you may find the medics won’t get as excited at the problem. Sadly, they seem to forget how scary it can be for us at this stage.

Ring your GP to ask for a progress chase. If you know which Consultant you’ve been referred to, you could also check with his/her secretary.

Best wishes and welcome to the site!

Newdawn

[BluMts]

As you say, you first need to have a quiet and serious talk with your good GP. Let him/her know how much you appreciate his care and action and ask how you can both go forward now in getting his referral actioned. You are lucky to have this GP on your side and I hope you'll be able to show him how much you appreciate his care. He'll not be happy that his referral has been side-lined. Personally my heart goes out to all conscientious Doctors and other medical staff in the present situation they are suffering. But try to get the attention you need

[Newdawn Administrator in reply to BluMts]

Sadly GP’s are struggling to get referrals from primary into secondary care at the moment given the enormous waiting lists and changed priorities. Like you BluMts, I have experience of lack of response to a health situation that my GP referred but was ‘rejected’ due to more stringent criteria in that service. My GP (and myself) were powerless to challenge this and I’ve been left with no in-road into nephrology services ☹️

The backlogs and changed priorities in secondary care must be causing immense frustration to GP’s which is why surgery staff appear to be receiving more verbal abuse from frustrated patients. The NHS is under intolerable pressure just now and increasing Covid admissions coupled with usual seasonal demand is going to see a hard winter. Doesn’t help that a high number of GP’s still refuse to carry out face to face consults of course.

Newdawn

[happyclappy]

Lack of communication puts the stress into NHstresS!Hang in there, tough times all round.

[Phil4-13]

I hope you get a clear response to the status of your appointment. Don’t allow this waiting to torment you. Keep in touch with the doctor’s office and keep notes of who and when you spoke to. I would tend to get myself nervous and my notes put me back to confident thinking when I see it hasn’t been that long since I’ve spoken to someone and I can reasonably give it a little more time. Sandra🙂

[Taptapping]

Hi SafelSorry to hear you have not been given an appointment. I have had a similar experience with the NHS, diagnosed in April and referred with a two week response. Downgraded to non urgent and no contact for months despite repeated follow ups. I was finally given an appt in August but then they cancelled it. After a very emotional call with my understanding GP he pushed the hospital and I have a new appointment next week.

I really hope it doesn’t take 6 months for you to see a consultant! It sure has been tough mentally, make sure you keep in touch with your GP.

Best wishes

[DoriZett]

Being so new to CLL you might not be aware that physically, this delay is probably not a concern. EMTIONALLY, though - the delays are brutal. CLL is a chronic, slow growing cancer - so these delays don't usually cause any physical harm. Medical people delaying the schedules may know this, but as newly (pending) diagnosed patients - we do not - and the stress levels go off the charts. Since CLL/SLL is a cancer of the blood and lymph nodes, it is all over your body already - so there is not the concern of cancer "spreading" like with other types of cancer. They may eventually "Stage" your cancer, but it doesn't mean the same thing in blood cancers as it does in solid tumor cancers. New oral medications are doing a great job stabilizing CLL/SLL of all disease profiles, and you will probably have a period of what is called Watch & Wait (W&W) once officially diagnosed, before treatment would even begin. That period of time is your gift to educate yourself on treatments, so you are ready to make decisions when/if the time comes. You are in the right place on this website for support and information. cllsociety.org is also a great source of info (US based but still informative for those in other countries). All the best to you as you navigate this journey - we are all here for you!