CMML Hospital neglect!

So my partner Alex has been in hospital with a chest infection for the last 6 days. He had a blood test on Monday morning at the local hospital haematology department and ended up at A&E on Friday last week (today is Thursday) as his blood test must have shown increased white blood cells on that Monday how could they have missed this? On admission his platelets were 12. A leukaemia specialist haematologist from the specialty unit he had an appointment booked with (now postponed) came to see him and was shocked that our local hospital had not treated him with platelets or anything else, they haven’t been communicating with him and I think that this doctor may have ripped into the team there..

I feel like they have been very neglectful, unprofessional and totally uncommunicative. I’m desperate to get him into the care of the specialist unit he’s been referred to so he can get some treatment. We still don’t know what the prognosis is or what treatment plan is going to happen. I’m deeply worried that this seems to be to be worsening too quickly! could I be worried for nothing, is this normal?

  • So sorry to hear this. I hope Alex feels better soon. I think we have all been let down in the fact that no one has explained this illness to any of us. W all know its about blood counts but as laymen it is not easy to understand. we just need to know what is ahead of us.

  • The truth is nobody in the NHS has got the time or isn’t able to communicate well enough with patients. Which is why cancer research uk is an invaluable resource. I think I need to speak with someone at some point at cancer research uk but I’m not sure exactly how much time anyone has to listen to me.

    Having done a bit of research on CMML and I think I’ve learned a little bit about platelets unless someone knows something more. 150 to 400 is normal, high white cells and low platelets can be an indicator of infection. Platelets for someone healthy regenerate in 7 to 10 Days.

    if anything is wrong here please let me know.

  • Hello 33Archersmate

    I'm so sorry to hear about your partner's diagnosis and all that has happened with his care up to this point. It's understandably a difficult time for you both at the moment and natural that you have concerns about his care moving forward. 

    You can find information on our website about making a complaint. You might also want to get in touch with the hospital PALS team as it's part of their role to help resolve concerns or problems when you're using the NHS. 

    If you'd like to talk with one of our nurses about your partner's diagnosis and what this may mean in terms of treatment then you're welcome to call them for some advice and support. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I really do hope that things improve soon. Keep in touch and let us know how you're both getting on.

    Best wishes, 
    Jenn
    Cancer Chat moderator