I didn't dwell too much on the more negative aspects of my care during my 2.5 week stay in Pilgrim Hospital, however it was impossible to exclude how my PDPH symptoms were ignored and my initial pain also ignored. There were other instances where I and others in the ward questioned why on earth some of the staff were working in a caring profession. There were some lovely healthcare assistants, some lovely nurses, some friendly catering staff. The ones you remember when you are in pain, unwell, undiagnosed and feeling uncared for are the bad ones. This does not help the hospital's reputation which was again called into question on the news yesterday.
One healthcare, male, didn't speak. He would prod patients to wake them at 2 and 6am and just expect them to raise an arm for BP, a finger for 02, turn their head for temperature. He didn't speak. The hourly checks where they write down how the patient is, some asked "are you OK, are you in any pain, is there anything you need?". He asked nothing. He took blood pressure from a cannulated arm enough times to push the cannula out. He left a full, stinking commode for an hour in a room with 2 patients who had open abscess wounds and myself, post surgical. He would have left it all night until, when he turned the lights off I called him and pointed out that surely it wasn't healthy to leave bacteria circulating our room with open wounds, let alone the smell. He didn't respond verbally, just took it away. When my young neighbour was sick on the bed, he changed her sheets twice wordlessly, offering no comfort. When curtains are drawn, you can't just go poking your nose in, but I desperately wanted to go and hug her or hold her hand while the nausea passed. If I hadn't been quick with a bowl she'd have been sat in it for several minutes.
Then there was Hattie. That's her real name. She was nothing short of miserable most of the time. She was totally dismissive of my symptoms and when I told her I thought I had an answer she was sarcastic. As if to say "Leave diagnosis to the professionals". Look where that got me. One night, when my pain patch was due, I'd requested a lozenge for breakthrough pain - having been told by the pain team she'd asked them to change it from a timed dose to when I needed it (ie, when it hurt, since breakthrough pain doesn't come on bloody time). This was at 8.30 she said she'd come back with my patch. I told her I was in a lot of pain and it had run out when I got the lozenge (she insists on calling them lozengers and previously watched while I opened one to see what I did with it. It's a lozenge - is that not self explanatory?) At 10.30 I couldn't take it any more (didn't realise it was so long), and pressed the bell again. I was crying in pain by the time she arrived 10 minutes later. She was moody already. In tears I said "You told me you'd be back with this two hours ago" "Yes I said I'd be back...we had handover" was her only reply. I was too stunned to point out handover is 15 minutes not two hours and still wasn't a valid excuse to leave someone on such high doses of pain relief in pain. It takes up to 12 hours to catch up when late with a patch. I told her I'd need another lozenge now since she'd been so late. i was told I couldn't have one for four hours because they were every 6 hours. I was crying through pain and anger at this point and told her that is NOT how they were prescribed by my GP nor by the pain team. The best they could offer was getting a Dr in theatre to change it to 3-6 hours after he'd finished - this was at 12.30am. Idiots. I told her it was not acceptable that not only was I dying, suffering extra pain due to the hospital (anaesthetic error) and now this - I'd never been in so much pain as on this ward. She carried on writing, having not made eye contact at all, and said "Sorry about that" and walked off. The next time she was on, doing drugs rounds she administered to the other 3 patients, but another nurse came in to do mine - I wasn't last in the natural circuit. Carla and I exchanged looks, was she really refusing to do my drugs?
I've already mentioned the healthcare who made me have a bed bath after trying to make me do it myself, despite the fact that I am well within my rights to refuse. She did eventually offer some sort of apology by saying "I'm sorry we got off on the wrong foot" after changing her attitude and asking me each time if there was anything I needed from my locker where I couldn't reach or if there was anything else she could get me - realising now the extent of my pain and situation. I accepted that by saying I was literally in a world of pain and barely able to communicate and she said she hadn't realised how much.
Then there was nasty tea lady who also changed her tune after I was angered enough to point out her rudeness.
There is, I'm happy to say a long list of nurses and healthcare staff who were either pleasant or exceptionally caring and so I don't forget for when I get around to writing to the hospital here they are:
Katie, Fliss, Ruth, Annie, Sally, Holly, Rick and Michelle. There are a couple of others whose faces I can picture but I never caught their names. Annie in particular stood out to me, she genuinely asked if we were all right and was always pleasant, changed my bed quickly because she knew I couldn't sit out for long. Rick was always up for a bit of banter, such a contrast to his other male colleague.
I'm pleased to say all the Doctors who visited me or cared for me were pleasant and professional. Especially M-C who took my history, she even referred to me in my discharge letter as "this delightful lady" which is probably the nicest thing I've seen in my medical records. She was concerned that I should start chemo again as soon as possible due to my increasing count, if that was the plan, even offered to my oncologist to move things along faster. I told her I just needed the time to recover, having been through so much more than expected. I see him in 2 weeks. Potentially to start the poison in 2.5.
The 2 anaesthetists who came to see me a few times were very polite, obviously, and apologised that this had happened. I was more than disappointed to hear that one had spoken to Mr Butt (seriously, I would get him wouldn't I?) regarding the blood patch and decided not to risk further damage. Yet he never came to see me personally to apologise. At no point did I consider complaining, I have no idea if I'd have grounds to sue, given it delayed my recovery further. It's not something I'd do - it is a known risk (0.5-1% chance), not one that was explained to me beforehand however, and in the end was totally pointless since no beds were available in ICU. I think that's unprofessional, which is why I've named him, also because I couldn't keep the joke of his name to myself.
The physios, as always, lived up to their reputation. They did leave me alone for a few days after 2 days of making me feel shit walking until the hearing problems and headache improved.
When they were on shift the ward was a happy place in my last week also because of patients Coral, Carla and L, the youngest.
I was diagnosed in December 2006 (officially in January 2007) with Stage 3b rectal cancer. As soon as I became ill enough to think I might not just be over tired from finishing my previous house and moving to another doer upper, I started recording everything. It was an ongoing struggle to remain positive but every year got easier. Treatment for damage caused by treatment to save my life was ongoing and every 6 months I had blood tests and saw my oncologist for him to assure me I'm "Fine". However I'm no longer "fine" and was on a palliative care pathway but passed away on 8th February 2012. Read my blog and remember me.