As I mentioned previously mum was told by the consultant on Friday that they were no longer going to treat her cancer and everything now would be about palletive care. Fine if thats how it has to be, but the consultants seem to forget they may deal with 100's of patients suffering from this disease a day but my mum and dad have never had to deal with it before. They do not know what is normal, not normal, who they should contact, who they should turn to for the answers. So the consultant packs them on their merry way with no care plan in place, no contact numbers absolutely nothing. The consultant even put the wrong quantity down on the presription for Oromorph so they didn't have enough of that for the bank holiday!
So today fear and panic set in and I get a call saying mum can hardly breath and he doesn't know who to call. I dash round and they have got in such a mess and a panic that is why mum can't breath not that she is taking her last breaths. I call the district nurses number that they were given back at the beginning and who had visited once back at the beginning to do an assessment and they still thought my mum was in hospital. She had been discharged weeks ago! They apologised and said they would sort out some form of care plan. Although by the time I got home they called back and cancelled their visit and re-arranged for another date!
Why don't staff realise that these people are frightened and often hiding from the trust and in the majority of certain generations will not ask for help or pretend they are managing? How can hospital staff just pack them off and not even check that they have the right care in place.
FormerMember
When we were told my husband was only going to receive pallative care we were assigned a Macmillen Cancer Nurse Specialist. Her name is Michelle and she is our rock, she is the one I turn to for advice and answers. I would suggest seeing about getting your mum assigened to a Macmillen CNS.
When my husband was told he didn't even understand what palliative meant so didn't know until I had to explain to him weeks later just what was happening. I have since lost my dear husband and I wrote to his original consultant and his oncologist to say that I felt they needed to get back in touch with their patients and realise they are human and just what this is meaning to them. The consultant sent a lovely letter back and apologised if he seemed not to care and said he does realise just what the news he is giving means to his patients but he will remember and take on board all I said for the future. The oncologist never replied, I hadn't blamed him or any of the doctors but I did feel they needed to know how we felt.
Contact Macmillan or do you have a hospice locally, they will have a support network and will help you all through this. Also keep posting on here there are lots of people who will help and can answer your questions. Love to you and your parents.
I think its fair to say that hospitals and GP/community service don't really have a joined up way of communicating. Its shouldn't be that hard to get right. I agree with the others, ask for a Mac nurse for your parents, also talk you their GP about other support that may be available.
