Can I insist doctors speak to me about my mother's health? or are they not allowed to?

[foxinsocks]

my mother has cancer, recently diagnosed, and lives abroad with my dad (11.5 hour flight so pretty inaccessible, i.e. couldn't be there in a hurry)

my parents don't like going to the doctor, when they go, they don't ask questions. We rarely got taken as children. They just want a quiet life, hate being ill (as do I) and are very much the 'we don't want to worry you' type.

Except now my mum has cancer. It is honestly like trying to get blood out of stone getting ANY information out of them. This is so important to me as both dh and I work full time and have children at school, so I need to know and understand whether I have to go NOW to visit or whether I can hold off. It's also important money wise because the tickets to go are potentially around £1.5k per ticket in busy times and I need to know now if I have to 'find' (i.e. borrow lol!) £6k (if all of us go).

So....my dilemma is I am getting drip feed info. Today they tell me it has definitely spread to the bone and is grade 4. I look that up and it implies it has a very low survival rate. I then ask more questions and get told the original cancer is grade 1 (which doesn't sound right if it has managed to spread to the bone). I then get told not to worry and not to visit as she's not dead yet.

Thing is, all I want is the facts. And they won't give them to me. I have asked nicely but I know them well enough, they won't tell me exactly what is going on.

Can I call the doctors? Would they speak to me? I just need to know so I can plan what to do!

they're not allowed to talk to you about someone else's health.
except if it's an underage child, they can.

sorry for your mum though :(

thanks nickelbabe

oh :( well I guess that's one avenue closed off

I just want to know what's happening. It is so frustrating being so far away as even if I was round the corner, it would be hard to get the truth out of them but being this far away, it's impossible.

They wont tell you anything, your mother has a right to confidentiality.

Could you share your feelings with your mother - I realise that would be very dificult, but would mean that your mother would then know what you were thinking, and so might be more able to tell you things if she is trying to make you feel better by hiding them?

There's nothing - save teh dr's goodwill - to stop you talkign to the dr though. If you tell the dr that you mother thinks it's grade one but things she's said concern you it's grade four, you may have reason to suggest to her dr that she's not fully understood the situation.

Give the dr all the information, conflicting though it may be, that your parents have given you, and take it from there.

I don't expect the dr will impart much information, but at least they should get your mum in for a chat, just in case she hasn't understood.

I'm really sorry. What a worrying situation.

Google Cancer BACUP - they have useful info about how to talk to someone who has cancer, and lots of other links etc.

i've told my mum everything about how I'm feeling but unfortunately, they are stubborn old souls and determined to do everything their own way and don't want me to visit etc.

I think I will have to bite the bullet, find the £6k and take all of us out there. Even if she gets very annoyed lol! I can't see a way round it to be honest.

If she died because she was too proud to tell me how sick she was, I would never forgive myself for not visiting.

I think they fully understand what the doctor says but just don't want to tell anyone else the truth. They have always been like this.

yes I think you are right, thanks. I lose nothing from calling the doctor, even if I tell him I know he can't tell me anything but perhaps he can explain the grade and what it means etc. and even if he can't tell me that, I'm in no worse position than I am now.

Would your parents tell their doctor that it's OK to speak to you about it? The doctor would probably need that in writing.

I think you should go if its possible. Sometimes what people say and what they truly mean are 2 different things. If it was my mum she would be the same about not making a special trip etc but i know once I was there she would be very pleased.

DH spoke to his parents gp without them giving permission. He simply said that we don't live on the doorstep and that he was concerned that they weren't giving the gp all of the facts, so that he could treat properly. DH was probably lucky, but the gp was more than happy to discuss the situation with him, and it helped to get treatment for FIL moved along.
FIL did apologise for DH getting involved and 'wasting your time because he's worried about me' to the doctor.

I'm so sorry your mother is unwell Fox, it is very difficult for you, especially living so far away.

Just sharing a couple of thoughts from one who has been on the other side of the fence so to speak. I don't know how recently your mother was diagnosed, but for the first six months or so after my DX, I found it very hard to discuss my illness and prognosis with anyone, especially those I loved the most.

So it may be that your mum needs a little more time before she can be completely open, to sort out her own feelings about her illness.

Also, she may have decided she doesn't want to know everything from the doctors, some people just don't, information can be scary for some, comforting for others.

If she's anything like me,her feelings will be 'I don't want to worry the children, and I don't want their lives to be disrupted by me'.

Of course, it doesn't really help you in your dilemma, but to some extent, I think you have to play it her way for a while, until she's ready.

Hope I haven't offended, - certainly not my intention to do so, simply trying to come from a different angle

I agree cancer charities phone lines (cancerbacup, or MacMillan) can be very helpful with these things, so worth a call if you need to talk it over.

thanks Kurri, no I'm not offended at all

I'm sorry to hear about your diagnosis and I hope your treatment is going well.

Yes I think my mother feels very much like you do. I also don't want to interfere in the way she is dealing with it.

My concern is that she may not have that long. And if I sit here and wait, and don't do something, then she might be dead before I sort something out if you see what I mean.

Actually reading that back, I am making it sound like this is more about me than her :( and I'm not meaning to. But I feel almost paralysed being so far away and not knowing what is going on. And I would just like to waltz in and cheer her up a bit :(.

I totally understand fox - cancer hits whole families, not just the person with the illness, and none of it is easy to deal with for anyone. Thank you for your good wishes, I am doing fine at the moment

Very best wishes to your Mum.

KurriKurri
Is it possible for you to pop over by yourself for a few days, or is it just impossible to leave the dc. I just thought it might put your mind at rest, as well as giving you some precious time with your mum.
And not cost a fortune!

*fox

Perhaps you can ask the Dr if you should visit now or when would be best?

thanks. I found out more details today from someone else, including the fact that they are not doing chemo because she is too ill (a fact they didn't tell me :(, was actually just chance I found this out), so I will have to go over.

Thanks for your kind thoughts and messages.

My mother also couldn't have chemo because she was too ill and could often be quite closed on the subject depending on her mood, but...

...when we were at her house during GP home visits, if we asked, he would tell us seperately about the typical progress in someone of her situation.
It meant he could be as accurate as he could about her prognosis while remaining vague about her specifics, IYSWIM.

Sorry to hear this though :(

Thanks mumi. Sorry to hear about your mum.

I have actually been thinking about what kurri said and speaking to my parents again. They really do not want me to visit so I think I will respect their wishes. This is the way they wish to handle it and I think I have to go with that for the time being.

they prob dont want u to be stressed.but it inpossible not to.should ur mum be in a hospice.if she is so ill.Not fair om your dad.Personaly i would over ride your parents and visit even if it is only for a few days..At least u would see your mum and dad.

I appreciate this is an old thread but hopefully this information may prove useful for others in the future...

If you have a close and mutually understanding relationship with your elderly parent(s) and they are UK residents, you can print out a fairly basic letter for their GP, to the effect of; "I hereby authorise my GP and other medical professionals to discuss my health issues openly with (insert your name here) of (insert your address here). Yours sincerely (ask your elderly parent/relative to sign and date it here). Then print their name below their signature, together with their date of birth and hospital number or national insurance if known.

As parents get older, or become infirm, it can be a great concern to family members who feel they don't have a clear picture in order to make the right decision for their elderly relative. Being able to discuss their health issues openly with their healthcare professionals can often permit them and you to make the right decisions for those you genuinely care about. Although the DPA (Data Protection Act 1998) is important in maintaining the privacy of those you love, it can also prove to be a hinderence in some situations. The elderly relative concerned however MUST be happy for you to have access to any such records.

I hope this helps.