Hi Everyone
I am not sure if this is the right place to comment on what i am going to write,but it is my view as a carer!!!.
My husband had completed his SCT,and is now under Kings for 100 days,but we live 85 miles away.So Kings have an agreement with Canterbury that they will check bloods and do infusions as needed any other problems are A&E or Kings.
From what I can gather,its about money!!!He is officially a Kings patient for 100 days,but has to use the resources at Canterbury.So it has to be paid for.
So in many ways you feel a bit in limbo,or as my husband would describe,they have washed there hands of me!!!!
If everything went smoothly,this would not be a problem,you would go for bloods if infUsion needed they would do it.
If you are ill you go to A&E ,and get treated.
You have a problem with the general level of recovery,who is looking after the patient,you can speak your concerns to the nurse doing the bloods but does she make a note of it????
You can ring up kings and speak to a nurse who does not know you from Adam and she will make an assessment,and after 30 min and telling her,yes I hear what your saying,but I choose to not agree with your assessment.You just might be lucky and she will try to arrange an appointment for the next few weeks for you to see a consultant.Saying this you have to put your case well,and wait to see if appointment comes.
Is this good for the patient in any form,the answer must be no,and the sad thing about all this is it about money not the patients well being.
This is my reading on it as a carer .Eve
I thought you might like to know what is happening now.
Slim made a vast improvement over the weekend,So I have apologised to the nurse who did not know me from Adam, he has taken longer to regain any form of quality to his life.She has arranged for him to see a consultant without having to travel to London,also left his appointment in London open to see if he is fit to make the journey.
She has now given me the name of the one and only Myeloma Specialised Nurse who I can contact in the future.
So things are looking up.Eve
