What do I ask

Hi, my mum has been diagnosed approx 3 weeks ago with lung, liver and bone cancer. She is to frail for treatment. I live 250 miles away so try to speak with ward staff. Other day I got told she had gone for a head scan it turns out she went for a lung scan. So it's frustrating! What questions do I need to ask Dr's and discharge team re discharge, any future needs for mum? Thanks 

  • Hi there and thanks for the post

    I am very sorry to hear about your mum and that she is too poorly to have any treatment.

    This must be a difficult time for you especially living so far away from her. As you say it can be difficult to get a real sense of what is going on from a distance and it is important to keep asking questions to the doctors and nurses involved.

    As and when the time comes for your mum to be discharged I am sure the nurses will want to talk to you about this. You haven't said if she lives alone or has other family around her to care for her but this is something the team will want to know. Asking is your mum well enough to go home or does she need referrals to be made to other support services or equipment need ordering to meet her needs at home. On the other hand is it more appropriate for her to go to a nursing home or hospice.

    Patients are at home they are generally under the care of their GP however as required they may also be referred to other support services such as social services, District nurses, occupational therapists and so on. Most patients with cancer will also be referred to a Macmillan nurse or palliative care who are experts in symptom management and support the patient and loved ones. 

    So as I say firstly speaking to the team about what the time frame is for your mum being discharged and what services she may need to be referred to before this happens. 

    I hope this helps.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Best wishes

    Naomi

  • Hi Naomi, thanks for your reply and sorry for my delay getting back to thank you for I. The hospital were going to discharge her again saying she was self managing. Thank god I was there at the discharge meeting to challenge their overview and get them to read her notes. She is in hospital, a NHS one but contracted out. They seem to not understand mums diagnosis, stopped all of her meds and took her off oxygen even though she was only on 81%. I had to demand they put her back on it as she was distressed and panting for breath. I feel beaten by they system. 

  • Hi Liz- up- North and thank you for your post.

    I am sorry to learn that you are feeling beaten by the system. It is really difficult when you feel you are not being heard.

    I wondered if your mum has a cancer specialist nurse you could speak to or if she has been allocated a nurse on the ward who you could talk things through what your concerns are.

    If you have your mum's permission it might also be worth having a chat with her GP, and see what services and support they can offer once your mum has been discharged.

    Please do come back to us again for any further information and support

    Take care,

    Jemma