REAL LIFE STORIES

[mkdons]

My husband was diagnosed 2 weeks ago it is so hard trying to fight to get help, he has worked all his adult life and paid into the system yet it seems that is not enough.

I wish we had invested in Private Health Care rather than a pension, It shouldnt be a battle to get treatment it should be a right.

Where and who do you go to for a second opinion, its frightning.

[DRAD3]

Hi and so sorry to hear of your husband's diagnosis, you must both be absolutely devastated. Things do seem to take such a long time from diagnosis to treatment beginning and just at the time when you feel at your most fragile you need to muster up incredible strength to start battling the system. I am not sure where you are in terms of who you have seen, what has been said, planned etc., but in any case, if you are unhappy with the speed of progress then chase, chase, chase. I do suggest you ring the support team on this site, as they will be able to give you some advice based on your particular circumstances. I am not sure who is winning the private/public healthcare race when it comes to this particular disease - I wonder whether PCUK have any statistics relating to that? Not particularly helpful, I know, if private is out of the question anyway.

Do let us know if you need any help - we are here to support you in any way we can. Keep strong and know that you are not alone.

lots of love

Deb

x

[laura]

hi there, and welcome to your new friends and support system, i endorse everything debs has said, do write down your questions, worries etc and take the notebook with you, write down the answers, so hard to remember exactly what you have been told, things will start moving im sure. but does take a while for everything to slot into place, even the private sector would have to do scans, tests etc etc, cos cant treat without being sure what is being treated, but do understand your sense of urgency, my hubby is coming up to 3 yrs post diagnosis

love laura xx

[JOC]

Hi, I am sorry to hear your news

My advise is push push push be polite but persistant

You need all the info available to you

Maybe private might be quicker in terms of scans etc, maybe the support team can point you in the right direction

[susikus]

I am sorry to hear you have joined our band. You may have read some of our stories and if you have you will have learnt that behind every 'patient' is an advocate. And, frankly, it does no-one any good to be 'patient'. Have you been allocated a specialist nurse? If not you should have and can ring the oncology dept and ask for her/him. Where I live she is called the liver and pancreas specialist nurse. If you already know who s/he is then you can ring and ask for what is happening and when. I also found it extremely helpful to keep a dedicated diary that I had with me for every day, every phone call, every hospital visit and in it I would write (and be seen to be writing) everything that was said - and sometimes I asked for clarification so that I could write it down correctly. It was so helpful to me to be able to look back on it and report accurately and say clearly 'who said what'. Has your husband been referred to the multi-disciplinary team (MDT)? I am not sure that 'going private' offers many advantages as with the MDT you have a collection or experts. But you will, I am sorry to say, have to do the chasing, chasing, chasing. Be lovely, be polite but be firm and be persistent, ring every single day if need be. Good luck and please do come back and tell us how you are getting on.

Sue

xxx

[PCUK Nurse Dianne]

Hi mkdons,

Thank you for joining the forums where you will have lots of support from the wonderful 'forum family'. I will email you with some questions and information.

kind regards,

Dianne