The haematologists I see here at Hammersmith Hospital are a great bunch, friendly and professional.
Recently I was told I was on blood pressure meds that weren’t compatible with my blood cancer treatment, I should be taken off it, given something else. Fair enough. But the Haematologist would not message my GP about it, he wanted me to do it, he didn’t want the GP to think haematology were interfering.
I’ve been thinking about this, what happens when my condition worsens, do I have to act as messenger. Surely haematology are in charge of my cancer and related issues?
Hello again @d00d, lovely to hear that you have such friendly haematologists, I find it can make such a big difference to our treatments and care. Believe me, I’ve read about other forum members who deal with quite the opposite!
I wonder though whether your team could be a bit more helpful in passing on their understanding of your condition and needs to your other specialists. While it’s great that we can advocate for ourselves, my non-medical understanding is that of course our various doctors should be letting each other know of what they’re prescribing us, how they’re treating us, and how these affect us holistically.
Perhaps you’d like to call the Blood Cancer UK specialist nurses as they can advise what is typical in your situation and perhaps how to make sure your various specialists are communicating without you needing to chivvy them. Their number is 0808 2080 888 and they’ll be back Monday morning from 10 am.
Hope that helps a little @d00d, it is a concern of mine too.
I think it maybe down to accountability issue. Them not wanting to make a poor decision and also that most gps aren’t as clued up as specialists hence the titles. I would hope neither have an inferiority complex of who you trust more or who’s better to go to or advice counts more, but it maybe a way that they would only prefer to consult in what they know best.. which when it’s something 50/50 doesn’t help you. Fingers crossed things don’t worsen but I think if it was me I’d want everyone singing off the same hymn sheet but it’s certainly worth seeking advice from both as well as your clinical nurse..
Giving the support line is sound advice as they are truly brilliant
@DuncanB how interesting that you have found that to be case. We are also in Scotland and that’s repeatedly not been our experience. My hubby was found, in a Haematology ordered scan, to have a growth on his kidney and we had to ask GP for a renal referral. I was shocked but did so. Anything like sick lines, slightly more regular meds (even those related to chemo ie anti sickness last summer) all had to be got via GP. Indeed I had to get recent Haematology bloods done for him via GP and contact Haematology with results. It’s a mind blowing experience at times!
I’m under care of Raigmore Hospital in general and they do referrals for bloods to Community Nurses at local hospital.
As I’ve had a Bone Marrow Transplant last year Queen Elizabeth Hospital Glasgow take the lead on everything Transplant related but it’s Shared Care with Raigmore.
On whole works well and from what you described some hiccups along the way in your husband’s case.
I’m retired so sick lines not something I need to worry about.
Up where I am in Highlands results of blood tests done by Community Nurses can be seen by Raigmore and Glasgow teams and I think the GP too even though bloods go to Wick for analysis.
