"Cancellation of operation twice in 2 weeks"

To whom it may concern.

I made a formal complaint regrading the care/or lack off in arranging and canceling my surgery.

I have acute Myasthenia Gravis and have to have plasma exchange every 4 weeks at Canterbury hospital. My Myasthenia is so progressive that surgery, due to general anesthetic, has to be planned around my treatment. I am currently awaiting ACL surgery at Medway. It has taken me over a year to be well enough for surgery after being seen in clinic and physio sessions when we finally decided that it was time to do my operation.

Initially phone calls were made between myself and clinic staff to arrange the surgery around my plasma exchange treatment, as my Neuroligist wanted it done 3-5 days after plasma exchange and also have an HDU bed booked for my after care. This was all originally booked for a specific date and I made the arrangements for my plasma exchange to be done around this date, which included an assigned nurse at Canterbury Hospital coming in on a day off to treat me. I attended a detailed pre-op assessment at the hospital where I saw an anesthetist, to which I was told it was important I had an HDU bed booked and also that I should be first on the list on the day of surgery. Unfortunately, the assigned clinician became ill and I received a phone call saying it was cancelled. I was obviously very upset but understood illness happens.

I explained my situation to the team regarding treatment, my medication had been changed to prepare me, and also that I have other consultants and professors in Kings and St Thomas waiting for me to have this operation before we can further other treatments with me.

Also, the fact I would need extra care after surgery due to my medical health and so my Husband had arranged 4 weeks off work to care for me and this would not be able to be changed to alternative dates later in the year. Unfortunately, due to my condition I can't just be sent a date through the post for surgery as lots of pre-planning has to be made. I was then told the team would speak with the orthopedic operations manager the next morning to see what they could do. The next day after not receiving a call as promised I rung up to be met with "I'm sorry there is nothing we can do do help" which I still wasn't happy with so asked to speak to the clinician himself. I eventually got to speak to the clinician and explained my situation and that I cant just be given another date and that much planning needs to go into me having surgery.

It was then agreed to put me in if my nuero consultants agreed it was ok as this was now being 11 days after plasma exchange treatment. I got hold of my neurologist in Kings to discuss if they were still happy for me to go ahead, She agreed I still should proceed as I was getting an HDU bed booked, and as I know that plasma exchange is available at Medway as I've had it in ICU before, she also wanted me to proceed as she felt it was important to get this over with so more important aspects with my treatments could get under way.

I then rung the clinician back to say that I can go ahead with surgery and also once again explained my situation. They said they would notify the clinicians secretary who will have clearance to put me in. He also said to ring another hospital colleague to confirm details with her, which I did, and was told everything was all booked in and to turn up for the treatment.

I arrived at the hospital in the pre operative ward on level 3 red zone at 7am and was booked in and asked to sit in the waiting room, I started getting a little anxious as everyone was being called through and I knew I was under the impression I was supposed to be first on the list but sat and waited. Then an anesthetist called me round to speak to me and went over the fact I need an HDU bed and he was going to call to make sure I had one etc etc, They also were not sure why I was towards the end of the list as someone with my complications should be first, so they said they were going to see if they could move me up the list. I then went back to the waiting room and waited and then then the registrar called me round to speak to me, they explained the operation, marked my leg, and said he would see me in Theatre.

I then waited in the waiting room and at 10. 15 the same anesthetist came and asked to see me again to which at this point he explained that he was very sorry that my operation was being cancelled again due to the fact no HDU bed had been booked for me and now there was no beds in there or on ICU so it wouldn't of been safe for me to have surgery. I was obviously very upset and angry as this was the second week in a row, and all the emotional stress of this and planning had been once again put to waste. The anesthetist explained that somebody had clearly made a mistake and that this was very unfair due to my situation and was very apologetic. He advised us to not leave the hospital without complaining as something or someone had definitely made a mistake by not booking me a bed. The nursing staff of the ward came into explain but by this time I and my husband were very angry and just wanted to complain to someone and then leave the hospital, we were then left in a cold room on our own for an hour with nobody coming into see if we were ok, so we just left and went down to the PALS office our-self.

We have spoken with PALS who were very understanding and they recognised how much organisation and phone calls I had to do myself to try to get the operation planned. They then checked something on the system and could see that on my surgery waiting list form it clearly states an HDU bed is required so this meant someone had not followed through to book this for me even after speaking with staff members endless of times over the week before and explaining my situation in some length to them and reiterating the need for HDU.

I am so annoyed and disgusted with what I have been put through. The upset, stress and worry of all this and have just about had enough of it all. I think the way I have been treated when my first operation was cancelled has been completely disgusting. I feel I have just been made to feel like a pain to people and it just feels like nobody has taken into account my medical needs through the whole process and I have just been a name on a piece of paper.

Stress actually makes my condition a lot worse and I have come home feeling very poorly, and this is all due to the hospital procedures. I will probably not be able to have this operation now until the new year because of my treatment and also the time my husband can have off work to care for me after, this now means all my other treatments will also be delayed.

I cant tell you how angry and disgusted I am. With all the bad press the hospital is getting you would think mistakes like this, that cause so much upset and stress to patients wouldn't happen. Due to this one mistake it has meant two peoples surgery have been cancelled today for nothing, as they cancelled someone else having surgery today to put me in.

I honestly don't like complaining but this whole process had been so upsetting for me and my family that I have felt I need to do something about