Another cancellation – Where to next?

This year one of the challenges I’ve set myself is to not get angry or worry about things that I have no influence over. If only I’d have known how challenging this would be.

I’ve tried to be honest throughout these blogs, whether the focus has been on fitness, events, feelings or physical well being and plan to continue this throughout this journey to surgery, recovery and back to fitness. So here is an update on my recent experiences and their impacts.

When my operation was cancelled for the second time I found it tough to move on and carry on with everyday life, just waiting for the third date. The constant questioning and sympathetic looks or comments that are well meaning just wound me up. So when the hospital called with a new date I told very few people. In the build up I tried to remain positive, “third time lucky” and all that. Despite my best efforts I don’t think I every truly committed myself to the possibility of the surgery actually happening, I was anxious about the surgery but more scared of the feeling of disappointment at another cancellation. Things began to feel real the night before, packing my hospital bag I was left wrestling with myself, was I really prepared? Am I really patient and disciplined enough for this recovery process? Would it actually happen?

The morning of the surgery I got up half an hour before I was due to fast to eat some fruit, then went back to bed contemplating what the day ahead might bring. The nerves really hit in when the phone rang. I recognised the number immediately. My heart sank. With trepidation, I answered and to my surprise it was the nurse asking if I could go in early. After discussing my breakfast, it was decided that an earlier slot wasn’t an option but I was reassured everything looked positive. Arriving on the ward everything felt real, the journey to “normality” would soon begin. We sat and waited in the reception area watching other visitors eat and drink and come and go for their appointments, one and a half hours we sat there with the only update coming when I asked the receptionist what was happening – “they are just waiting for the bed to be ready” I was told. The longer we sat there the more convinced I was that not all was well.

A voice I recognised called my name, it was the nurse that had called me 24 days previously to cancel my operation. We went into a side room where she began “it’s not good news I’m afraid”, following it with something about a bed crisis. To be honest I didn’t really listen to her, and my response was not particularly positive, how many times can this happen? what happens now? and how much longer do I have to live through this? She explained that these decisions were not taken lightly and when we fired a response of how long can this go on for she confirmed that actually cancelling “electives” was becoming normality over the past few months (note to self must time needing the NHS outside of the bed crisis next time). She could offer no other advice, no clue as to where I go from this point, other than confirming that my operation wouldn’t be happening within the next 4 days and would therefore fall outside of the NHS 28 day pledge. Her only other comment was that the surgeon (who had never spoken to me let alone met me) wanted to know why I had chosen a myomectomy over hysterectomy – Do they really think this was an appropriate time for this discussion? I left the room with anger, frustration, confusion and sadness all flying around in my head, I wanted to scream, shout, kick and punch yet here I was sent away with no answers, no support (other than a leaflet) and expected to just get on with it.

I called St James hospital Patient Advise and Lisason Service (PALS), these guys apparently deal with complaints and ease concerns over issues such as operations cancelled at short notice. The lady I spoke to was quick to comment that my experience was “not good”. She then told me she had logged the issue and someone would be in touch within two working days, since this was a Friday it would be Tuesday before I heard anything – this also happened to be the 28th day from the previous cancellation. Why did I feel like I had just called a helpline and reported my kitchen appliance wasn’t working? Not happy with this response I called Leeds west CCG, the response? Pretty much the same only I would be left until Wednesday for a response.

Tuesday arrived and no response, I called, left a message and eventually got a call back from a woman who was as rude and patronising a woman as I have ever spoken to, she gave me the feeling that I really was nothing but an annoyance to her. She offered no advice, no date, no new information other than I needed a new pre-op assessment and that “they were not working to the 28 day pledge”, that was that! When I asked her whether she would be happy if her family member had received the service I had, she told me she could no longer help, a manager would call me back and the phone went dead. Yes St James this is your PALS service, I’m sure you are proud! Leeds west CCG was just as helpful with continuous empty promises of phone calls back. I found myself a week on with no answers – for those counting that’s 7 of the 28 days wasted.

Desperate to make some progress I took matters into my own hands, called the secretary of my original surgeon. In that phone call I had a (potential) new date and a phone consultation with the surgeon. If I could do this in one phone call why was the hospitals own organisations having so much difficulty? The date was some weeks off and so I continued along the PALS and CCG route in the hope of a sooner date. After numerous more phone calls I finally received a call from Emily – GM of women’s services. Firstly, thank you for actually apologising and at least acting as if you were listening to my concerns. Unfortunately, the information you gave was so far from reality it could be filed in the “fiction” department.  I was given a new date, a number of a secretary to call to arrange a pre-op and everything looked hopeful. I called the number and was told the list for that date was full and there was no way I would be placed on it since…..wait for it……none of that surgeons cases ever gets cancelled – not only that but (in her words) it shows how out of touch management is because she doesn’t even deal with pre-ops. Imagine, if you will, you are a patient that has had numerous cancelled surgeries, you are given hope, made to feel like someone was actually listening and trying to help then you get this response.

The final straw for me was calling the CCG to tell them about the call with Emily and subsequent disappointment of false information. I explained how I’d arranged a surgery date and a phone consultation but just needed help arranging a pre-op, I’ll look into it and call you back was the response. Less than an hour later I actually received a call back, “Good news” it started, now here I was thinking they’ve sorted everything out, everything will be moving forward someone is actually going to help. Then she continued, I had been moved from the surgeon who’s list was full to my original surgeons list and her secretary would call to arrange a pre-op. Hardly good news and proof of just how well they listen since this was the information I actually called to tell them earlier. Hoping for something useful to come out of the conversation, I asked what the chance of the surgery happening and what happens if it’s cancelled again – the response well we just have to hope that it’s not and if it is call her back. With that my “complaint” was closed.

Throughout the past two weeks of calling numerous people, waiting for call backs, listening to empty promises, trying to arrange operation dates, pre-ops etc, I still had to hold down a job, manage constantly fluctuation emotions, pain and fatigue as well as holding myself together while every Tom, Dick and Harry gave useless advice or commented on how frustrated they were. Not exactly a walk in the park.

I’m aware that there are individuals in greater need of a bed than myself, but I’m also aware of those that are medically fit but in need of social care beds or care packages that are left in hospital beds because of issues within these systems. My frustrations – beyond the obvious of 3 cancelled surgeries, 2 on the day, 1 whilst actually on the ward – if as stated by the staff this is becoming a common issue there must be an outlet that is able to deal with those of us lost in a cycle of preparation, disappointment and uncertainty. A complaint/liaison service that allows people to express concerns and have these dealt with in a swift and reassuring manner should be the corner stone of any organisation with such fragile systems.  This is not the first time we have experienced a bed crisis in the NHS, nor will it be the last!

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