[jillsParticipant]

Hi,
Just to add that Mum’s consultant says he needs us to get the test two weeks before as the PP and Light Chain testing takes longer, not sure why, maybe because it is a more specialised type of test.
Jill

[Anonymous]

Hello and thanks for all your information. I’ve since learned that the report sent to my GP does not contain Free light chain or M-protein measurements, so that route for me to get my results isn’t available. I got a message to my Consultant 9 days ago, and despite calling a few times to follow-up, I still do not know my latest results. I’m currently in negotiation with my work to agree conditions for returning to my job in the next few weeks, but I do not know if I should be doing this as I do not know the progress of my cancer. I still find this unbelievable but …!

All the advisory literature I have read tells me that I am bigger than my cancer and that it does not define me. I strongly believe this and have not put my life on hold, however, I don’t feel supported in this by my hospital at the moment.

In so many ways, the care I have received at my hospital has been second to none, and I’m still hopeful that good sense and a professional caring attitude will prevail.  I’m trying to put the whole issue to the back of my mind until my next consultation meeting on 8th August.  I will then try to resolve this but if I can’t, then I guess I’ll have to do as some of you have had to, and use the Freedom of Information legislation Subject Access Request process. This would be such a waste of time and money for the hospital and myself, but, I will have tried!

Will post when I learn more.

Thanks again.

Jan

 

[Anonymous]

Hi Jeff,

That’s amazing that you can access your medical results online. Can you tell me which hospital you attend? Wouldn’t that solve a lot of problems if we all could do that!

Regards

Janet

[tonyfParticipant]

Must have missed that part of Jeffs post ref online access to hospital records, I attend the same clinic so next visit will ask the obvious question, will let everyone know.
Regards
Tony F

[jeff605Participant]

Hi, sorry about not catching up on this, unfortunately been whipped into i.t.u. on the 26th July with an abscessed appendix and perforated intestine, which has left me with a nice stoma ! Added to that, my vertobroplasty was due on 4th Aug.! So am back home last night, and spending today catching up on the missed days including the four I was in a coma. Obviously stopped the chemo while in hospital, so need to sort out what’s happening with that. The Revlimid still working, p/p down to 4.7.
The access to information is through Patient Access, this is run by the local surgery and allows booking, appointments, etc to be made through the internet, and now also allows access to medical records. Whether this service is not nation wide or not I don’t know.

[Author]

Posts