I’ve benn working at GBM For three years now and there’s one thing that really grinds my gears. There is no one in charge of your case, no one with a big picture view. Surgeons do surgery, oncologists treat the cancer radiologists do images and treatment.
mid you make it to the end of SOC Stupp. There is no one to talk to about next steps or risks. You do not get any outputs from the MDT, no minutes nothing
i have been complaining to KCH and MTW for over a year about a post op infection and worsening symptoms my complaints were ignored and the symptoms incorrectly put down to focal seizures
Now I have had to more surgery a disfiguring craniectomy and anti biotics that have laid waste to my white cells
1) how do we get a voice at the MDT ?
2) should I get mire opinions ?
3)make an official complaint ?
any advice welcome
HI
I can empathise with your frustrations. I felt exactly the same as I supported G through his journey. We were passed from pillar to post. Most appointments with the oncologist were video calls and we never knew who was going to appear on the screen. It could be any one of four different oncologists. We went two years without seeing anyone face to face.
I would suggest a formal complaint if you feel it is warranted. Sadly patients do not get a say at an MDT but your oncologist/CNS should be aware of your feelings and be relaying that to the wider MDT as far as I understand it.
It also seems that every health authority is slightly different in what options they can offer. I would suggest in the first instance that you voice your concerns to your oncologist and perhaps your GP who can advocate on your behalf.
Sorry I can't be of more help here. Navigating the red tape of the NHS is a minefield sadly and emotionally draining.
sending love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi SophsV
ranting is allowed. It really shouldn't be this hard.
I would say hospice nurses trump the community nurses in my experience but at the end of the day, they need to work as a team to provide the best level of support for the whole family. Caring at home is hard. G wanted to die in the local hospice but there was a 24 hr delay in getting him admitted as it was the weekend when things all kicked off around here. One day of that level of care at home was too much for all of us and wasn't the best situation for him either.
Hard as it is, you need to take everyone into consideration and there's nothing wrong in admitting "I can't do this" at this stage.
Hope you get something organised to make tonight easier.
sending you all love and light and strength and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
