just need to rant...

yearagain…..How very very upsetting all this is getting for you!

maryeliza is right, PALS could be the way forward. Do you have someone else who might be able to contact them for you if you don't want to?
If not please follow her advice and email them asking for their assistance. As she points out you need another set of ears in the hospital to be an advocate for you.

I'm aware that Wednesday 10th is your appointment and I hope you will come back and let us know how you're getting on.

good luck and best wishes.

Please get in touch with PALS - you need someone inside the hospital on your side now. You could email them this weekend with a detailed description of what is happening. Better an email than a phone call. Im sure they will take your case up - make it clear what you want to happen. I’m truly shocked by what is happening to you

here I go again.
cant believe the "copy of doctors letter" I received.
this is the GP who wasn't satisfied with the letter he received from the last procedure.

now I can see why, oh for gods sake, such incompetence with someone with cancer.

having endured 11 (not 10 as in the letter) cycles of chemotheraphy for bowel cancer, the latest letter informs my GP, a CT scan for my NECK will be arranged.

I already have a CT scan date for chest/abdomen/pelvis next Wednesday.

the letter continues to say, once I have received the date for my neck scan I must contact the colorectal specialist for an oncology appointment.....which I already have anyway for may 28th.

what the f..k is going on.

Good news, sounds like things are progressing

feel a little relieved today.
I had a call from the GP last night.
I explained my situation..

he said he is not satisfied with the information he received and is going to contact the hospital to clarify things.
I hope so.

Best of luck

?

just a quick update.

I went to the gp's surgery today.

I will receive a telephone call from the GP, maybe tomorrow sometime.
at least I didn't have to battle for it as I was afraid I would have to.
hohum.

Several years ago, when I went to outpatients for a more minor problem, I filled out a form that resulted in me receiving a copy of the letter that was sent to my doctor. Don't know if this would apply now, or in your more serious condition, but might be worth your while enquiring next time you receive treatment. {flowers}

thank you.
at each oncology meeting I would say when will the procedure be done, it was simply dismissed, it is as clear as day on the surgeons discharge notice after major surgery in 2016 that the procedure will be done, but it was never addressed.
I just want answers and major discussion on my care or lack of it.

I dunno, it seems like its the DIY...NHS, well that is how it feels to me.

yeragain65. I'm SO sorry! I am speechless actually. This is simply disgusting!

You said;
"that the different agencies, i.e. oncology and or surgeons haven't spoken since 2017 when I was due for a certain procedure, which somehow didn't happen making my situation so much worse."
I think you must complain about this to PALS. Please do not let is pass. I did not encourage my friend to follow up or complain about how his referral to the Scan unit was delayed because a Nurse who promised to take his card there did not do it. There was a huge delay. He had prostate cancer. When eventually the scans were done, it was too late for him to have curative treatment.
Please, whatever they do about your appointment, write a letter documenting this terrible failure to give you a procedure you were due, and send it as a complaint to PALS.
I shall be praying for you especially Monday when you phone. Lots of love

Sorry to hear that Yeragain65 . I have secondary breast cancer in my lung, rib, liver and spine. My GP told me they have a system (something to do with a red asterisk on my file) so that when I phone up the receptionists know I am a 'priority patient. You shouldn't have to wait for anything whatsoever, even if it were a verucca. If they don't have a similar system with your GP, then I suggest you start every conversation with 'I have stage 4 cancer and I need ....' All the best with your treatment.

I had a blood test and was repeatedly getting called back to the surgery for more tests, but not telling me the results of the tests or what they were looking for. Understandably I was getting worried, and also could not get an appointment, so I rang demanding that a doctor call me back to explain the purpose for these tests and the results - I got a call a couple of hours later

thank you for your replies.
after my last procedure, I thought it was "odd" that the unit actually rang me twice after discharge to "see how I am".

that was after the procedure prior to the last one, I told the consultant that I should have had it, after surgery in December 2016.

I am building up to Monday morning, and hope that I am able to get an appointment then, if not, I will think about PALS.

I have a ct scan next week, but this confusion and , well, despair ,isn't doing me much good to be honest.

huh, Monday, I will begin matter of fact and politely ,explain the stage 4 cancer, and if they still say...the computer says no.....I will explode! so there!

Oh, forgot to add, I was also allocated a nurse at the hospital. I forget the term for her now. I was given her card and I could ring anytime if I had any worries and she would get back to me soonest.

I was surprised to read of your lack of communication with your hospital specialists as I thought all hospitals now had the MDT approach (multi disciplinary team) when dealing with cancer patients. I was treated at The Royal Marsden and my breast surgeon/reconstructive surgeon/oncologist/radiologist were my MDT team and discussed their cases and what needed to be done between them for the next steps in treatment at weekly meetings so everyone knew what everyone else was up to.

I'm not surprised to hear of your frustration trying to get an appointment to discuss the hospital letter though. However, I would be reassured that if it were anything very worrying they would surely have either recalled you to the hospital, or, your GP would give you priority. It could be that your blood count is low or you are a little anaemic and they have suggested your GP gives you something to boost you up.

What a rotten time you are having and it does infuriate me when people who are already going through hell have to fight to get appointments when you are feeling fragile and not up to arguing to fight your corner.

Sending you courage and I hope you get some answers soon.

Yeragain for you

I have been having cancer treatment and have found that I can usually sort out appointment problems by phoning my GP's secretary. Recently I was told that no appointments were available for a month but when I spoke to the secretary, miraculously she was able to give me a much earlier one!

Another vote for PALS. We found PALS to be very helpful when a hospital delayed in providing a (much needed & crucial to recovery) post-op clinic appointment for DH.

How horrible harrigran. Imo and e GP surgeries have the facilities to do what they want to - it depends on their priorities. A good practice manager is usually the key to a well managed practice although a supportive senior manager also helps.

I understand your frustration, I had a lot of problems getting to see Drs when I was being treated for cancer, it was easier to see a consultant than a GP.
When I spoke to the GP about being able to talk to someone on the phone when problems arose he just said they did not have the facility and just turn up at 7.30 in the morning and queue.

Another vote for the PALS hospital team. They seem to have magical powers. I've used them in a couple of hospitals. Good luck.

You should definitely contact your local PALS or the surgery's representatives group.

River is so right about PALs. They’ve never let me down. You don’t have to go in person- I’ve used email generally and you can also ring. As for the OP’s problem - I just despair at how poor some GP surgeries are. A few years ago I was involved in visiting a huge range of GP surgeries and I got increasingly frustrated at the continuation of poor practice ( in a non clinical sense) when good practice is so easy. The computer systems that GPS use are capable of dealing with so many issues so easily - for example one surgery I visited put an electronic note on the records of all patients receiving treatment for cancer which meant that they got immediate appointments. They also annotated patient records if someone close to them had recently died so that staff were aware.

We have recently had problems getting information from our local hospital about an important referral. Department phone constantly busy and no way to leave a message. We visited the Patients Advisory Liaison Service (PALS) at the hospital and within 5 minutes they had accessed my husband’s records and given us the information we needed. I believe PALS are in all NHS hospitals so definitely worth contacting.