Do I ask?

Hi, My mum has just been diagnosed with Pancreatic cancer, she was admitted to hospital after developing jaundice, sickness, she had an ERCP done and then discharged home. My Mum had a keyworker who we never met and I certainly never spoke to. I also never spoke to her consultant either. My mum is 80 and my father is 82 I am an only child, I live an hour away and have been supporting them as much as possible between work and my family. She has just ben told by phone that she can be operated on at a hospital, but I feel totally at sea! I feel really unhappy at not really knowing what is going on? My mum just accepts what she is told and agrees with everything but she is so vague over everything. I just wish someone at the hospital would tell me some idea of what we are dealing with, how bad, the risks. I would cope better if I had sound advice and support. I know maybe my dad has priority over information but I will be the one who will be there for them when they need care and support, transport and I just wish someone would talk to me.

Can't you ring the hospital and ask for the secretary of the person in charge of your mothers case and ask for that person to call you? Get your mums GP on board as they are great at getting things moving. The GP sent a brilliant hospice nurse to my husband to help sort out his medication as he was in shocking pain. Don't be frightened by her title as in hospice, they know so much about pain control and in our case the GP takes her advice and writes a script for all that she advises. You need help I think!

June

Hi Xanie,

Within the NHS, there are very strict data protection rules as you can imagine. Most of the time, the professionals will direct all information to the actual patient. If a spouse or partner happen to be there at the time, then this is fine. However, if another family member wants to find out information, and they are not at a consultation, then you need your mothers permission for this. As long as she indicates that she is happy for you to have information, then it should be ok. That said, most professionals will not give out in depth information over the phone.

I suggest that you ask your mum's permission to have some information, then make sure this is conveyed to the hospital, so that it can be recorded in her notes. She does not have to give written consent - verbal should be fine, but if she wants to write a note, that's also fine.

Once this happens, then you might be able to arrange a telephone call with the surgeon outside of clinic hours, when they are able to give you some time. Failing this, if you can find out exactly what she is having done, then email us on support@pancreaticcancer.org.uk, Dianne or I would be happy to help you.

Kind regards,

Jeni.