MDT today

You will be told in time, but you could ask for it to be hurried up if you have the contact numbers or emails of the oncology team. I agree it’s not fair we as patients aren’t included but I guess we would slow it down with questions about every little thing.

The thing to remember is that when they do tell you what’s decided you can then question everything and if necessary to ask for a second opinion. 

Hi Ansteynomad, it always seems wrong to me that they have a MDT meeting without the most important people being there - ie the patient and his chosen support! We have even been notified of an ‘appointment ‘ but told not to attend because this is the MDT meeting!

I can see that having patients and their significant others at the MDT meeting simply would not work. Thats fine. What is concerning me at the moment, and causing me a great deal of stress, is the fact that nobody can tell us when or how we will find out what happened at that meeting.

We have a friend who started her breast cancer journey at about the same time as my husband was referred. She has a full diagnosis, she has already had surgery and she is now lining up for radiotherapy. We will be 12 weeks in on Monday and we still do not have a definitive diagnosis,  never mind a treatment plan!

I think a MDT meeting is a clinical discussion primarily . But , how can they make a decision about people without their input. The NHS did have the mantra, ‘No decision about me, without me.’ Not sure whether it still prevails, though.

The good news is we have a Urology appointment next Thursday. Hopefully we will make some progress then.

Needless to say we did not make any progress up that appointment. The surgeon we saw simply told us everything we had been told before and said that the decision of the MDT had been that my husband would need another scan. He had that scan last week and apparently his case will now go back to MDT, when we do not know, and then we will have another appointment.

The issue is that way back in June they found a bone lesion on the MRI and something happening with a lymph node on the CT scan. It took them until MDT on 1 August to decide that they needed to look at this again, because they didn't know whether either of these was cancerous. 

In the last two and a half months we have gone from believing he was stage 4, to believing he was stage 3a to not knowing.

Hello ansteynomad 

Perhaps it's time to contact the hospital PALS service (Patient Advice and Liaison Service) and see if they can move your journey forward - as you say you aren't getting anywhere and time is passing by.

Best wishes - Brian.

I've tried PALS, back in July. Consultant had 7 days to respond. Still heard nothing. Waste of time. But I appreciate the thought. 

Good Morning ansteynomad 

Have you tried the hospital formal complaints system?

Here's a link that may help:

Raising-your-voice-toolkit

I hope you can get some movement.

Best wishes - Brian.

Ha!

I complained in 2012 after three years of being pushed from pillar to post, getting more and more ill, without a diagnosis. They did not want to take on my complaint, so I ended up complaining to the Chief Exec about that as well. None of it did any good. I ended up diagnosing and treating myself!

I tried to complain again in 2021after I had been verbally abused and intimidated by a junior doctor who knew he had misdiagnosed me and put me on treatment I didn't need, but didn't want his Head of Department to know. The after effects of the unnecessary treatment included two emergency surgeries, so it wasn't a small matter. I was never able to get my notes in their entirety and ended up bringing the lawyers in.

The issues now are the delays and the poor communication. Neither is going to improve.