NHS: Communication with patient!!??

Don’t start me off, I’m on a daily weekly monthly cycle of disaster.

Last Wednesday I actually went to the GP in tears about not being spoken to by oncology. It’s so easy for them to ask questions when I’m F2F but it’s hard for me to understand and work out what’s the best thing to say, the questions come the next day after thinking things through but then you’ve lost your chance to ask because there’s no way to ask and it seems they don’t want to chat. I think they actually like to be incommunicado.

isten to this which I got today, after two week wait,

Email (15/12/25)

“I have forwarded your email to Dr A (my oncologist) and A(the assistant).

They have asked me to let you know that they will be updating the palliative care doctor that is seeing you on Wednesday on your email below so that he can discuss with you the purpose of the proposed appointment (with radiology) in ‘the city’ on 23/12/25.

Kind regards”

I’m not even sure I know what’s going on. So my oncologist is playing secret squirrel with a dr at a local hospice to help me understand what I want my oncologist to explain to me. Namely that I want to know what lesions in the scans 3 month’s ago are getting bigger and which are getting smaller. Is that too much to ask.

oh I’m sorry. I was meant not to loose my cool.

Hi Del

I'm with you on that.  The communication (mis and lack of) has been one of the main causes of any anxiety I've had through my journey so far. 

Diagnosed in May and I'm having a RALP on 6th January. 

Everytime I've been given a date for anything it's been "two weeks" but it never has been.  First of all, my biopsy was cancelled due to high blood pressure (I don't have high blood pressure) and was told a biopsy under GA would be booked urgently, certainly within the following two weeks.  1 week later I was given an appointment of another month.  Although I explained that the consultant had said two weeks, there was no budging them. 

After receiving my biopsy result (gleason score 9) I was told I'd get to discuss options with the surgeon and RT consultant "within 2 weeks".  After 2 weeks I phoned to chase and was told it would be 10 weeks.  Things started to move after I complained but I had so many appointments booked and cancelled it was difficult to keep up.  They cancelled one appointment in error and when I again phoned I was told I'd misunderstood!!  Eventually I got to speak to the consultants secretary who told me they'd cancelled the wrong appointment in error. 

After finally agreeing to surgery, as I was on HT (due to the the risk of a 10 week delay) I was told I would have another MRI in December and if that was OK, I'd have my surgery on 6th January.  Towards the end of September I had a call telling me my surgery would be in early November and when I told them about my discussion with the consultant they again said I must have misunderstood.  But I again had to stand my ground and I couple of days later they phoned back to tell me I was right. 

One thing I've learned from this episode is not to take things for granted and if it seems wrong, to challenge it.  It shouldn't be necessary but unfortunately it is. 

Having worked for the NHS for 6 years I know the pressures the front line staff are under but with better systems and processes things could be made better for everyone. 

Best wishes 

Mike

Good evening from a fellow Scot . I totally understand where you’re coming from regarding lack of information.  

phone your local health board and ask to be directed to the person who deals with transfer too  other authority . I think it’s Scottish transfer first ( my mother was transferred to St Thomas in London for surgery)  we had to chase it up at that time and for us it was NHS Lothian head office in Edinburgh we called.

they do the wheeling and dealings of such a transfer. or contact PASS  patient support and advice . 

Best wishes  and hope you get a quick appointment . 

let us know how you get on 

Liz & OH 

xx

Hi Mr U, you've more or less confirmed my thoughts that the service is so broken that service efforts are dispensed elsewhere and communication with patients is considered a necessary sacrifice. It really shouldn't be and if it's as chronic as I suspect, forums can become heard via MPs but I suspect like me, you may hold them with a similar contempt. 

One bit of advice I could offer you is to take some time before a consultation to 

LIST YOUR QUERIES. 

I do and I don't leave until I've received a satisfactory response.  I agree with you that many professionals don't appear to be the best at  promoting understanding or seeking questions beyond their necessary scripted input. I make no apology in telling them to clarify anything I don't immediately understand and I go to these consultations in the belief that it's MY consultation and ME that needs all the information and answers available. 

My husband and i were getting nowhere with the oncologist . I had a list of questions  for our 1st appt . He told me to put the paper away as he would answer everything we know . 2nd appt I asked why he wasn’t offered triple therapy and felt I was put on the naughty step for asking . 

3rd appt the oncologist said his bit and I turned and said are you finish . Yes was the answer . So I said can we start again he asked why . So told him straight out how we both felt with his attitude . His face went bright red and he apologised . I told him under no uncertain terms we wanted and needed to know everything  ifs and but and reasoning . So we now speak everything through and we feel better for it . 

moral of the story don’t accept without questioning and reasoning.  

hugs to you all 

Liz & OH xx

Hello Mike, 

You've certainly had the run around but it's everything crossed for you getting your procedure on 6th. I chuckled at your consultant giving you the 2 week line, as those were the very words the surgeon used in November for my perineal op in London!!.... still waiting. I do have the greatest respect for the surgical teams and all the nurses but as you highlight, improved systems could include better communication. I would also offer that the Scottish Borders SPOC at McMillans have been helpful seeking an update on my behalf. However, they are required to email the surgeon direct as there seems to be no channel of communication as his secretary never answers her phone and clearly vetts her answer machine.

Hey hoe  it appears NHS patients are destined to be like mushrooms..... Kept in the dark and fed sh*te!

Regards

Del

I think the two week line must be part of their standard response. 

I don't think it helped that for a long period of time I was dealing with two different Trusts for some reason and once I'd been passed off to the consultants it felt like I'd been dropped by one Trust and not picked up by the other. 

Anyway, onwards and upwards. 

Mike

Hi Liz & OH,

Thanks for the advice. I'll give that a go

Kind Regards

Del