I have been diagnosed with CLL in 2014. I saw a haematologist/oncologist for 5 years, but as my blood tests were fairly stable he said my GP could take over and this has happened since then. When my GP checked my lymph nodes, she felt that she wanted me to see the haematologist again, so made an urgent two weeks referral on 11 August. On 9 0ctober I got the appointment and it will be 10 May 2023!!!!!!
I live in the UK and I now really think the NHS is broken. I despair.
Feestvarken
Hi there,that is simply not good enough.You must get back in touch with the department where you received your initial treatment and bypass your GP.I hope everything is ok,but the stress must be terrible!
We are trying another hospital and hope for a quicker response.
Agreed that is not good enough. Is your GP aware of this appointment delay. This shouldn’t happen. Is the GP going to refer you to another hospital. But yes you should also call the appointments department and ask why the delay and say it’s urgent.
Good luck
Colette
Yes, we are trying another hospital and hope for the best. I will call the hospital today to check.
It could also be a clerical error because I remember receiving an appointment for 12 months instead of 12 weeks.
At least in London you have a choice of several hospitals.
I will call the hospital today to check.
hi, sorry to hear that. It is so sad it is almost laughable. It has to be a mistake. I wonder where in the UK you are. Does your GP know. I would make an urgent call to your GP. I am finding the NHS quite proactive still. Maybe you could make contact again directly with the original oncologist? Take care
I live in London. We have applied to my original oncologist again, but I didn't like him, so I wanted another hospital. But I better stick with him.
also, I think it is important to be happy with your oncologist. It isn’t unknown to change to one you like and trust. Important to do it now before treatment starts, I think, which will be a more stressing time possibly
Yes, that's true. It's the Royal Marsden in Kingston, so I am sure there will be a few oncologists working there. Fingers crossed.
A friend of mine was a patient there until she moved to the north of England and she said it was always chaotic and busy. Although a number of clinicians some hospitals try to keep you with the same person. Were you ever given the contact details of a CNS that you could contact and express your concerns.
Yes, long time waiting and then 5 minutes at most with the consultant. What is a CNS?
A Clinical Nurse Specialist. I didn’t know I had one for years, sadly hospitals usually only tell you about them when you start treatment. I always call/email mine about any queries. When you do get a sensible appointment ask who yours is.
Write a list and try to bring someone with you and try to get the time you need.
Thank you. I've learned something.
Jesus wept - that is obscene. I trust your GP will help you fight for a timely appointment.
We changed hospitals, and I got a call today and expect an appointment quite soon.
I had a much needed chuckle at that Jammin. Something tells me that neither myself or Colette mrsjsmith are viewed as ‘easily manageable’ by our medics 😉
Newdawn
No offence taken Jammin and I know that sometimes medical services will attempt to get away with as much as they think the patient will tolerate. At the moment the NHS has changed from being a maze to an obstacle course! 🙄
There’s times even the strongest of us need support and advocacy particularly if we are feeling vulnerable.
I feel for your mother as I’m having a root extracted on Friday and extensive dental work done. Hoping my immune system can handle it.
Newdawn
Good to hear that.
Thank you,
All my friends would find me being ‘ manageable ’ very amusing. I am on three hospital patient groups and I am forthright when I think things are incorrect or progressing too slowly. My lovely GP is referring me to another consultant and with the covering letter she described me as an informed patient.
But thank you for your thoughts and the two times pre treatment one of my stepdaughters comes with me and takes notes.
Colette
Should I get a second opinion!
Anaemia or CLL? Time for re-referral?
Referral to a CLL specialist? Not yet....!
Confused again 
Could my fatigue be due to my CLL which is 'only' Stage A? My red cells are ok so I'm not anaemic.
