I’m home from the surgery. The brief headlines of the experience are that I am now minus a quarter of my bladder, my urachus, my belly button and most importantly, the tumour, which one of the surgeons described as the size of a small melon. I won’t know until the biopsy results are back in a couple of weeks if I’m now clear of cancer but the consultant seems engagingly upbeat about how the procedure went and the future.
I can’t write much more about the experience. So much has happened in the past seven days that I’m not sure I’ll ever truly get my head round everything. There were moments of awesome inspiration. But there were also moments so disturbing or degrading or frightening that I don’t think I can write about them. They are too unbearably private. The marked differences between the two wards was just one of the disturbing aspects. The first two days when I was in intensive care felt safe and compassionate. There were lots of deaths to witness and although my health felt more stable than most of the patients there, I still had to accept there was a good reason for being in ICU. On the third day I was moved to a general ward and the mood was completely different. Frankly, I was terrified and felt very unsafe. One night, unable to sleep, I spent an hour walking up and down the corridor and didn’t see a single member of staff during the entire promenade. Alarms were going off. A female patient was screaming the ward down but we were totally alone. I couldn’t wait to get away.
I’ve had a lot of time to think. I’m trying to learn who I am now. There were lots of messages that went way beyond just little old me and I thought a lot about the world of learning disability and my roles and responsibilities in the future. One thing happened during the second day in Intensive Care. I had been following Sara Ryan’s life tweeting of the Human Rights Committee gathering with the NHSE and CQC top dogs. It was depressing reading. As one MP despaired, “They’re just talking gobbledygook and theory”. I was interupted when a physiotherapist arrived, wanting to take me for my first post operation walk. When we got back my 1:1 nurse had changed my sheets. A few minutes later the nurse realised she’d misplaced her watch and during the ensuing search she even went through the waste bag with my dirty sheets in. I was back laying down and resumed following Sara’s tweets and saw a large message appear before me – No Time To Waste. (By the way, the watch was eventually found. She’d left it in my newly made bed and I was sitting on it). Learning disabilities is attracting a lot of press and media attention and we’ve got to make these precious openings count. And firstly we have to know who is of use. I’d say people fall broadly into three categories: the allies, the completely ineffectives and the enemies. The allies come in all shapes and sizes but to me, they are obvious. Ian Birrell who has published an article every week for the past few weeks. Jayne McCubbin and her relentless, human reporting on BBC breakfast. People like George Julian who do goundbreaking work without resorting to trumpets. And even quieter in the background, folk like Kate Mercer, Sam Sly and several others who just get it and get on with the job. They make a contribution and by heck, do they make a difference.
I don’t believe there are many out and out enemies. Most of the harm done is by people doing nothing. Keeping quiet even when their job depends on them doing otherwise. But we must spot the enemies and at least keep our third eyes on them to watch what they’re up to.
The biggest group is the ineffectives. Talkers, not walkers. I feel very strongly that we need to disengage with them. If there is no time to lose, these people use precious energy and that is unnecessarily costly. You don’t have to feel bad about disengaging. The ineffectives will always find someone to engage with. It just doesn’t have to be you. One note of caution is that some people by virtue of their position may appear ineffective but are actually in the harmful category. Watching Ray James give evidence to the Human Rights Committee, he came across about as useful as a fart in a paper bag. But when you remember that he is head of learning disability for NHS England, his ineffectiveness is shameful. By not doing his job from a position of great power, he can be seen as an enemy rather than an ineffective.
The most I slept each night in hospital was two hours. Partly because of the noise, lights and constant interruptions. Partly because of the terror of feeling so unsafe. Last night, back home, I slept for over ten hours. I had a short snippet of a dream that seems to fit in with this post. In the dream, a group of families and people with learning disabilities were going on an old fashioned charabanc day trip to the seaside. Late afternoon some of us meet up in a pub for a relaxing get together. A drink, a chat and possibly for the daring, a game of bingo. The group were purloined in the pub by a well known social media commentator trying to engage us in a discussion on the potential of personal budgets. Somebody put some Style Council on the jukebox for a singsong but this guy droned on and eventually we all gave up and joined in with his agenda. It couldn’t have been a more ineffective use of our time.
Allies – come on board. Ineffectives – sod off on some other trip please.