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Hello Wurlitzer. I have just read your post and wow you have been through the mill. i can't really answer your questions as I am from the Prostate Cancer forum, however by me responding it will "bump" your post to the top of the forum and hopefully will give forum members the chance to respond.

I am aware each hospital has a PALS service (Patient Advisory and Liaison Service). have you spoken with them to raise your issues - just a thought.

If I can do anything else for you please feel free to get back to me.

Take care and best wishes - Brian.

Hello Wurlitzer, it sounds like you've been on this rocky road for quite a while. Reading your post rang quite a few bells with me. I'm stage 4 advanced melanoma , started on my lower back and moved to my chest wall and have been through several surgeries followed by  immunotherapy which went off the tracks due to  side effects that shut down my adrenal gland , steroids forever ...ho hmmm. Throughout this my treatment has been complicated by a heart condition and to top it off , hair raising gall stone attacks. My ongoing cancer treatment for my growing and spreading tumor is now targeted oral chemo. (Mektovi and Braftovi). As my condition has  developed I've often found myself overwhelmed by the range of specialists I've seen and the smorgasbord of drugs prescribed to be taken not to mention  the treatment options to be considered. Whenever I feel lost, confused or hopeless I 've found the local  MacMillan nurses team the best help in directing me to the right person or place often making those contacts for me. I know most of them by name now and I'll use them unashamedly . All the other emergency numbers and contacts I've given up on having often felt I'm getting the runaround whether true or not. Anyway I'm glad to get that off my chest and if it's helped by sharing with you then that's a bonus . Yours and good luck

Thanks Brian, Actually I experienced a whole series of service level issues from the very start and after my interin recovery in March 2023 from being hospitalised with bad pneumonitis alongside the Alert Card Helpline's second ( ! ) failure to help me despite promises that it would be improved I responded to the third request from the Trust's CEO ( her covering letter with the Form) to complete and submit the National Cancer Patients Survey. The Form itself was the usual tick box type which perennially fail to elicit meaningful opinions but I used the request at the end of the Form to provide additional Notes and submitted several pages of comments which I sent with a covering letter mid March 2023 to both the Survey itself and to the Trust CEO . I clearly explained in my covering letter that my comments were distinctly intended as constructive feedback; that without absorbing feedback from users , no organisation could actually improve; that the NHS was consistently ASKING me for feedback (!); and that i did not want the NHS to enter its standard behavioural pattern of interpreting the feedback as complaints and then becoming defensive and unresponsive. I have ( with my wife accompanying me) had thus far 2 bland face to face meetings with staff who have each time faithfully promised to respond in writing and verbally to each of the 7 issues which I have raised. We now approach October and I have heard .......erm........nothing. I suspect that the CEO herself has not even seen my comments. In my time I have owned and managed then successfully sold a Ltd Company, written books, done quite a bit of media work and in the process have successfully pursued and "won" several major disputes. However, I do not believe that this is remotely as possible with the NHS as it perpetually predisposes its alert systems to self protection against litigation and reputational damage. That way lies Mid Staffs and.............much more. Apologies for the rant. It is very frustrating. At the moment I do not even have a Specialist Nurse. I literally have no "go to" contact. 

Thanks Millibob, you will more than likely resonate with my previous reply on this thread. I don't even have a Specialist Nurse, let alone a MacMillan Nurse. i don't even know what a "team" looks like. And like you I have a parallel condition-mine is an abdominal aortic aneurysm ( hereditary- my Father died of a ruptured one) which for 7 years has been monitored by regular ultrasounds at the selfsame hospital. I have done everything within my power to limit the growth acceleration of the aneurysm ( shed 3 1/2 stones and maintained a pretty constant ideal weight; walk average 6 miles/day; eat a high protein ,low fat diet; very moderate alcohol intake) . I earnestly endeavoured to get the hospital's Vascular and Oncology teams to collaborate/ communicate (!!) when i was making the decision ( in frankly, because of delays, far far too small a window of time) on whether or not to proceed with the Pembrolizumab immunotherapy as the MacMillan Phone Helpline Nurse advised me that since a) Pembro caused inflammation and b) an aneurysm WAS an inflammation I should thoroughly check this out. My GP agreed and there was correspondence between him and the 2 hospital Depts resulting in their saying in writing that there was no real evidence of potential danger but that as a precaution I would be given much more regular aneurysm ultrasounds ( 3 monthly instead of annually) to safely monitor the growth of the aneurysm. ( When it reaches a certain size, there is a need for major surgery). Cancer events and then pneUmonitis took over and I never had an ultrasound for 15 months. I once, at my first cancer  PET CT scan , asked if they could actually let the vascular Team see it so that my aneurysm could also  be checked. It felt as if i was speaking to them in Martian.A lot more ensued but essentially my aneurysm has grown as much in the past 18 months as in the preceding 5 years. And obviously, in terms of inflammation and blood pressure, my ongoing use of steroids is a huge additional factor. Support for my journey, in both practical and emotional terms, has been minimal and frankly depressing. I endeavour to stay positive by arranging what i call "distractions"- music gigs, theatre, cinema, short breaks, etc. and by keeping as fit as the steroids will allow ( I am currently on my 4th pneumonitis recurrence hence my 5th bout since January and thus my 5th course of steroids). Apologies for the rant but i do occcasionally find it cathartic.