The best part of my cancer journey (if there is one?) is the great support that I have had on this forum. I really appreciate the support one can get from the people on here who know what’s going on. The blood cancer nurses have been excellent to communicate with. Shout out to Heidi. The worst part of the journey has been the interaction with the hospital haematology department. Mistakes and confusion do not help. Also the support from my GP surgery is poor. I have been unable to get an appointment with the GP who has been monitoring me during the build up to my diagnosis. I don’t think it’s his fault. I had to wait 2 weeks to get an appointment with him last week only to have I cancelled and changed to this week with a totally new doctor. I don’t know about anyone else but I believe continuity is essential in these instances. I tried to explain that to the admin staff, to no avail. As for the hospital I was told my next appointment would be mid September which is a big gap between my last venesection and blood test as I’m newly diagnosed. I had to physically visit the hospital yesterday as I can never get an answer from my support nurse and I was running low on my meds (no repeat prescriptions set up) When I eventually got to see the doctor she told me I should have visited 2 weeks ago, “didn’t you get the letter” " obviously not" I replied. I was then given a prescription for meds and instructed to get a blood test on the way out. That’s where I am now.
Hi @BrianP
I agree that consistency is very important and it must be so frustrating that this isn’t the case for you.
I know I have had discussions with others before about the impact of things like this on our well being and in our mindset when navigating a blood cancer diagnosis.
Well done for being assertive and going to the hospital. I know you shouldn’t have to but I’m so glad you did.
I do hope the communication and consistency improves for you. Please keep us updated 
Thank you for your support Nichola, it’s much appreciated.
Hi @BrianP,
I’m really glad to hear the forum and nurse Heidi have made such a difference to you. We love feedback, and I’ve passed it on to the team - thank you!
The rest of your post sounds very frustrating though, I’m so sorry. For what it’s worth, it’s not unusual for people to be seen monthly or more frequently in the first few months after starting hydroxycarbamide, so a gap as long as yours is worth flagging directly with your haematology team, along with the fact you haven’t seen a doctor since diagnosis.
I know you mention having a specialist nurse - normally that would be who I’d recommend talking to directly. I believe you can ask for a different Clinical Nurse Specialist or keyworker, though availability depends on your hospital’s staffing and whether there are other nurses who specialis in your specific diagnosis.
If things like this keep happening, our Support Services team can help you think through how to raise it with your hospital team - they’re on 0808 2080 888 (option 1). There’s also a piece from another member on becoming your own advocate with your medical team, which might feel familiar.
Keep us posted on how things go!
Ceri - Blood Cancer UK Support Services
Thanks for your support Ceri. It means a lot. I’m going to check out the advocate link.Brian
Glad to read that the support here on the forum has been helpful @BrianP
It sounds like the whole appointment process and support from your clinical nurse specialist hasn’t worked as well as it should.
Hopefully things improve going forward.
Take care
No, not really Duncan. I was supposed to get a call back today following my blood test on Tuesday, but that didn’t happen either. Not to worry, I will get it sorted somehow. Regards Brian
Hello @BrianP
Nice to hear from you
I agree - the journey we are on has its twists and turns
The lack of co ordination in the NHS is a key one I am afraid to say I have experienced
Some times we have to take the ‘bull by the horns’ if you pardon the expression
I found myself sitting in York Hospital Haematology department and asking them to do bloods as I had not heard anything, no letter, no phone call, no e mail, nothing
I’m confident they know how worried and upset we can get, and once you get the right person / people I find things go well but yes - it can be very frustrating
It was lovely to hear what great support you’ve found on the forum.
Take good care
Best regards
Mike
Thanks for response and advice Mike. That is exactly what I’m going to “Grab the bull by the horns!” I was supposed to have a call back today about my recent blood test but, as usual, nothing. Time for action. I didn’t get through life sitting on my backside and taking it on the chin. I’ve given them enough slack. Well, no longer 
. Regards, Brian.
Hi Mike, well I took the bull by the horns and contacted The Patient Advice and Liaison Service (PALS) on Friday at my hospital. I explained the whole situation to them and put it into there hands to resolve the issues. Today I received a phone call from a member of the admin at the haematology clinic. She promised to resolve all my concerns. An hour later I had a call from the consultant who apologised for the mix ups but he wasn’t sure how they occurred. He gave me an update on my blood tests, which were good, and has sorted out repeat prescriptions, a repeat blood test next month and he will be sending me a written report on my condition. So, it was worth it. Now to sort out my GP practice who are making it difficult for me to see the GP who has been monitoring my bloods for nearly a year. The practice manager received my letter this afternoon. Nobody puts Brian in the corner. All the best!
Well done @BrianP ! It just goes to show that sometimes we have to take action. I am so pleased you have made some good progress. Thanks for updating us. It’s encouraging for others who may be in a similar situation. Willow x
Thanks Willow, I just could not let it slide, especially so soon into my journey. I have yet to receive a response from my GP Practice manager but I was allocated an appointment with my GP, albeit in 2 weeks time, the following day. Coincidence? I think not. Kindest regards Brian.