I am new but also looking for advice regarding being ignored by MDT

Hi WILMA 08. I'm sorry to read your story and how you were told you had cancer - Tescos is stressful enough at the best of times. If you're not happy with the level of care you're receiving and how your treatment is being decided I would first port of call speak to your hospital PALS (Patient and Liason Service). Your hospital should have a dedicated PALs page with all the contact details on - both phone number and email and hopefully they can raise any concerns on your behalf and have a chat with you? 

Thanks for taking the time to read my story and to top things off this morning I received an appointment letter for 30th November 2022 for the dietitian not at my nearest hospital but one over 30 mis away (WTH) and yet I am still waiting on the face to face appointment with my consultant, I do wonder at times.

Hi WILMA 08

It’s important to remember that no treatment can take place without your consent. Yes, the MDT makes a decision on what they believe would be best, but you don’t have to do anything you don’t want to. You should get an appointment with a consultant to discuss the MDT recommendations, treatment proposed, any possible side effects and potential outcome. If you disagree or are not happy, then this would be the time to speak up and discuss your concerns. 

I’m not sure if you live in England or Scotland, but PALS is in England and the system is different in Scotland, where the organisation is called PASS. 

It can be common to be sent to different hospitals for different things-I attended 4, the closest 10 miles away and the other 3 all 35 miles away. It depends where the relevant specialists are based. 

Sarah xx

Thanks so much Sarah, I should Known all this as I was a mental health nurse for 16+ years but had to retire due to ill health about 19/ 20 years ago plus my husband said he had said exactly that when the appointment for the hysteroscopy came through for 19th December 2022 for the removal of the polyp and coil being fitted (unfortunately I wasn't listening at the time).  but no letter's regarding the MDT meeting or there reasons or any other outcomes regarding any other interventions and certainly no face to face discussion with myself or my husband being present with me at the moment I am feeling as if I am being railroaded into something i really don't want, due to either my weight or adhesions because these adhesions are there for life like it or not and as for my weight how much do they want me to lose half a stone or 1 or 2 maybe 3 stones then down the line sorry Mrs Monaghan the cancer has progressed into the lining (WTH) all I want is everything taken away and end of the matter get on with enjoying our life together without this added stress for the next 6 months until my next biopsy waiting for results then informed your weight is still an issue wait another six months so on and so forth.

It’s just not acceptable for you feel like you are being forced down a certain path without discussion about what’s going on. And you need to be able to voice your worries.

I think I’d phone the consultant’s secretary to ask for a face to face appointment, and say that this needs to be in advance of any proposed procedure taking place. 

Sarah xx

Hi Sarah, since your advice and putting my sensible  hat on and pushing the emotional one aside (which was very hard to do at present) I contacted my MacMillin nurse and had a conversation with her or she with me until I said "Stop you are not listening to Me" as she was talking over me and rambling on.

I camely explained that firstly everything has been done through telephone conversations since my histerscopy biopsy and secondly unfortunately I haven't had any face to face meetings since then especially anyone regarding  the MDTmeeting which was done three days after my scans her answer was.  "You spoke to the consultant over the phone as she was working somewhere  else (Spain) and she said the out come was the hystroscopy to remove the polyp and the insertion of the coil was the outcome of the team meeting" at this point I was getting more annoyed and upset as well as feeling livid which I was pushy and told the nurse specialist once again "you are not listening again "I have had no meetings face to face and its time that happened She said I thought you had the face to face" !!!!? she new I hadn't, secondly  the appointment for the 19th December 2022 for the removal of polyp and coil insertion hadn't been any consent from myself for such a procedure and until I have any meetings  there won't be. I do have an appointment with an anaesthetist at the end of this month !!! Which had come through in the post all in the same day as the dietetics and appointment for 19th December 2022.

And the the straw that broke the camels back before ending such a terrible telephone conversation was that the consultant had passed me onto someone else, and the nurse specialist would get back to me once she has spoken to anyone, we will wait on that one as she's not very good at that my daughter has been waiting the month before her operation in October 14th 2022 she was ment to contact our daughter even at one of her appointments our daughter left contact details yet she is still waiting after her removal of her ovarie/tube and 14cm cyst that was lodged in the middle and her CT & MRI scans showed up dubious dark Web like inside the cyst and a dark ridge that was on the bottom outside, I even mentioned my daughter to her the first time I phoned her were she moaned that I had her mobile number which I was given by the secretary.

Hi Wilma

You've really had a bad start to all of this, and you’ve already got a lot going on with your daughter which must be such an extra worry. I didn’t have a Macmillan nurse, but I did have my CNS (cancer nurse specialist). She phoned me when I was first diagnosed, and like you, I had to tell her to stop speaking. It was all medical jargon and racing ahead so I said she had to stop, slow down and tell me in simple terms without the medical jargon I didn’t understand. I was really angry-as if we are not stressed enough. Well done for standing your ground. I developed a much better relationship with my nurse after she realised I wasn’t just going to blindly accept everything. 

You can’t agree to procedures which haven’t been fully discussed and they cannot go ahead without you signing consent for anything they are going to do, so they will need to get you a face to face appointment first. At least you are having an appointment with the anaesthetist at the end of this month who will go over the op with you, and it gives time for it to be cancelled if you are not ready to go ahead.  You are at the centre of this, it’s your body and your choice in the end, and you are right to be asking questions. I hope your daughter is ok-what a lot you’ve got to deal with right now.

Sarah xx

What is it with some medical professionals and the speed they talk at? When I was phoned to be told I had cancer, the registrar who called me rattled all the details off so quickly that it literally felt like I was at a train station and her words were like an express train rushing through without stopping. I can still clearly remember the sensation even though it was a year ago tomorrow. I had to say can I ask you to stop please as I’m not taking in what you’re saying, and she did, but it made me feel inadequate at the time. Then much later on when I got my post hysterectomy histology results, she did exactly the same thing (but in person). I only realised afterwards that it was the same person as the rushing feeling felt so familiar.

It’s overwhelming for us at first, and completely new, and I think they forget that. My CNS was racing on, saying “you’ll have to come in and go through the donut, then the mri” and blah de blah. I had no idea the donut  meant a Ct scanner for a start. Even though it’s more than 4 years ago I still remember I sat down on the stairs with my phone feeling both scared and stupid. My post surgery histology results were given over the phone by a different nurse and that was done in a much better way. 

I can exactly identify with how you describe the express train, and I’ve experienced it more than once over the years with different medical professionals. With the experience I have gained I wouldn’t stand for it for a second now, nor staff not introducing themselves, nor having staff in a room with no idea who they are and what their role is. Hindsight is a wonderful thing!

Sarah xx

Hi SarahH21& Marmitefan 59& Cakenport,

After putting on my big girls pants and just not taking any pish I ended up with a meeting on Friday 18th with the new consultant Mr Mills (New One that the Nurse Specialist informed me of at the end of the conversation on Wednesday 16th November 22) 

So hubby came in with me and the consultant wanted me to bring him up to speed which I did and I mean I did without any care for anyone as I was so stressed  anyway apparently my BMI is too much or big being the fat b I am my BMI is 60 and he informed me that none of the team would operate until it comes down to 50 as to many complacation's during the operation could Arie and that he wants me to go to the hysteroscopy clinic so I decided there and then I was going to get it done as quickly as possible without the anesthetic to get the polyp out and the coyle exactly were the polyp was to slow down any cancer within the lining because he said that he isn't 100% certain that the cancer is in the Polyp, I said " I know that it's unusual for a polyp to have cancer so there no point saying otherwise as I would no if your lying" so I do have an appointment with the anesthesist on 24th November 22 regarding the Hysteroscopy the consultant asked me to keep it as he is hoping within 3 months my BMI will be down to 50 and the team can operate and take everything out.

I did asked him "what would happen if I done nothing" hi reply was "It's not an option because when things start to reach between the 6 month they would be concerned and by the 9 month it would all have to come out no questions asked" so I have an appointment with the dieticianon the 30th November 2022 " and one for 19th December 22 that's the one with the general anesthetic so I will see which one comes first my husband also said about a local being given at the clinic and he was told " that won't be an issue".

Today I had a kina break down and sobed I just couldn't stop myself it all got to me and now I have this in my for an extra 3 month.