Got a letter yesterday with appointment date at the hosp to see the specialist - 15th July. No appointment yet for the ultrasound. Title of this thread 'Here we go again ...' The telephone number on the letter 'any queries about your appt phone this number, any of our advisers very happy to speak to you during office hours, after which speak to our answerphone, leaving your name, hospital number and tel number, we will get straight back to you.' I rang the number to see if get any info about the ulstrasound appt, knowing full well from previous experience that NO-ONE EVER ANSWERS, EVER. You always go straight through to the answermachine whatever time of day it is. Yesterday I rang 4 times and left 3 messages with my details for them to call back. Nothing. Today rang 4 times. Still nothing, but doesn't surprise me in the least. This is typical of the sort of the treatment I experienced with the NHS 4 years ago (2004), all recorded in my own personal file 3 inches thick. With 4 hospitals involved, regularly changing specialists and a horrendously incompetent GP (ex GP who I've since discovered is known in the medical profession as "Doctor Death" and has a number of ex-patients currently suing him (unsuccessfully so far), lack of communication between all concerned, lost files, bungled appointments, mix-up of patient details, the list is endless. I've lost count of the number of times I turned up at hosp for appointments, only to be told appt cancelled, or not recorded, go home wait for another - or phone that 'ghost phone' to make another appt. All the letters come from one hosp for appts at another, but if you phone the main number there you're told we are just administration, phone 'the ghost phone' (which is at the 2nd hosp where I have my appts and see the specialist 'team'). The 3rd hospital was where I was sent for my operation after being diagnosed (too long a waiting list at hospital number 2). Hospital no. 4 was where I went for my radiotherapy treatment as the only one at the time with the machines available. At that time I had a Macmillan nurse assigned to me - given a card 'Phone me any time with any problem at all, or even if you just need to talk to someone'. Another joke. Voicemail always, leave message, will ring you back. Never did.
When my appointment was eventually fixed for the Radiotherapy at hospital no. 4 (after mix-ups too numerous to go into here - in short, I was the one had to keep getting on to THEM as my whole case seemed to be lost and forgotten in the system altogether).
Eventually a date was fixed for St Patricks Day. (the op was on 27th Jan). I had to make extensive arrangements for time off work including organising an agency girl to cover the anticipated 2 months I would be off work). I turned up at hospital no. 4 to begin my sessions - only to be told my name was not on the computer. They had me down for 4th April. Frantically trying to get through by phone to ANYONE between the 4 hospitals to see what the hell was going on - the usual brick wall. Nobody. Then someone tells me they managed to get a message through to the specialist who had left a message back - forget about April 4th date - that I was to call her urgently. A worry had come up about a lymph node not taken into account, so treatment postponed until further examination and ultrasounds. Course no-one able to get through to her. She got another message through (how I don't know) to someone to tell me to go home and wait for her to call me at home. Don't know how I drove the car home through the traffic of London, because for the first time during this whole ordeal I found myself sobbing uncontrollably. Half way home my mobile rang. Stopped the car, it was the specialist. 'Come in tomorrow (hospital no. 2) for ultrasound, we quite worried...'. Went in, had the U/S, people there couldn't understand why.
Could find nothing. This is all just the tip of the iceberg. (obviously patients' records mixed up somewhere along the line). I had received appt letters in past with my name, time and date, and second page telling me to make sure I had a full bladder before making my way to the Maternity Department on that date!! and 3rd page had someone else's name and address. That poor person probably got a nasty shock in her letter telling her to go along to Oncology Dept. Anyway, to try and cut a very very long story short, after much of the same bedlam, I eventually started my radiotherapy May/June.
So ... when I say 'Here we go again ..' it's not really the obvious that I dread, it's more the involuntary involvement in the whole shoddy circus that surrounds it.
My thinking is that it can't possibly be as bad this time round. But I will keep you updated.