Hey folks, hope you’re all well and having a good week. Sorry for being quiet on here. I’ve been trying to find some resolution to the situation with the haemo and I’ve just had an email that is ridiculous! As a follow up from all of your super help on here (thanks again!) and speaking with my GP, I emailed the haemo team to ask for 4 things:
Why the letter I received following my appointment was such an inaccurate reflection of the conversation I had?
Why my condition has not been fully explained to me?
A written summary of any symptoms and other important flags I should be monitoring for, as I feel self-monitoring my condition and having data to share with the Dr would help both my mental health and ensuring my condition is properly managed.
An understanding of whether a Clinical Nurse Specialist in haematology is available to support me, as opposed to meeting with a doctor.
and they’ve not responded to any of them! Instead of answering the first question, they’ve said they asked the doctor who spoke with me to reflect on the episode and they will make sure it’s a learning occasion. No explanation of why they haven’t explained things, but they’ve said that they will bring forward my next appointment if I want it and they will make sure I only liaise with the consultant from now on. And, of course, no summary of what I should be monitoring and looking out for!
So frustrated. I honestly thought that I had asked really clear questions and their response is so disappointing! And at the end of it, they have the gall to say “I hope this email addressed your concerns , reassured you and reinstate your trust in the department”. Nope.
Oh @AL7 I can hear your emotions and frustrations.
Perhaps you now have the dilemma of whether to pursue the matter further v the effort, stress, health implications etc.
Please do let us know how you are getting on and really look after yourself
That is very frustrating! May be worth taking an earlier appointment and asking all your questions? If you are not happy then you could take it further.
Please keep us updated on how you are doing
Hi @AL7
Sorry to hear that you are having a difficult time communicating with your team. This is understandably frustrating for you.
You have every right to know the answers to those questions and we hope you are able to get them. I think having a named specialist nurse would be a very important first step in resolving some of these questions as they would be able to provide you with individualised care and advice, as well as being a point of contact for you, should you have any questions or concerns.
Having an earlier appointment and discussing your concerns with the consultant will hopefully be useful, they should be able to discuss a care plan with yourself and hopefully they can make everything clearer for you going forward.
If you are still experiencing poor communication, perhaps you could contact PALS if you haven’t done so already? (I can see you mentioned this in a previous post). Another option would be speaking to your GP to see if they can refer you to a different hospital or haematology team. We hope you get the answers and support you need as it is unfair to be kept in the dark, and hope that by speaking with the consultant that these issues are resolved!
Take care & best wishes,
Emma (Support Services Nurse)
