No Time To Waste.

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.


4 thoughts on “No Time To Waste.”

  1. Hello Mark. I am so glad you are home. Your experiences of hospital life is so typical from my own families’ experiences of the difference between good extensive care nursing and alternatively from the sometimes dangerous care on the general wards. This could be, of course, through lack of enough staff or perhaps some of them are just not cut out to be a nurse.

    I often follow your twitter page and also Sara’s. I am not on twitter myself but I have learnt so much from just following your tweets and retweets. I saw a tweet from Elaine James who tweeted ‘People are best at home with family. People and their families need to be trusted to make the big decisions about support’ That resonated with me because so often the people who are making the decisions about our loved ones are often really ‘the enemies’ The enemies you spoke of in your blog. quote “I don’t believe there are many out and out enemies. Most of the harm is done 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 are up to.” Never a truer word spoken Mark. Sometimes I find it hard to believe that we are living in a country that believes in Human Rights, when the evidence that keeps being shown in the media and from families with a loved one with LD, is of the exact opposite.

    Often heavy handed tactics are used by the people who are in a position of trust, and too much emphasis is placed on keeping someone physically safe and no emphasis is placed on the emotional well being of the person being kept away from their loved ones. Feeling loved and happy trumps everything. Why can’t they see that. Are they robots? Do they believe that once a family have a child with autism/LD they somehow become less human. Have we now become people to be looked down on and treated with disrespect?

    Mark wishing you a safe recovery and thank you so much for your wise words.

  2. Thanks Mark – you manage to put into words what we already know but forget to conceptualise to better cope with the ineffectives ( the statutory machine – social care and heath professionals, coroners, 4 of them) and enemies ( Mencap in our case) and how we need to spend more time with the allies who do exist in the system. Get well soon – we need you!
    These are not necessarily people who can change anything but get it and are alongside you when needed, though some make good things happen:
    the person who supported us through a DLA application so Danny could get a car which changed his life, despite discouragement from others in that organisation;
    the epilepsy nurse who cancelled all appointments the day Sam was dying to be with him and then ensure he travel in his chair to the hospice car rather than the mortuary;
    The commmunity dentist shocked by the state of Danny’s teeth who honoured his promise to organise a case conference the next day;
    the team leader who found Danny a job delivering papers once a week, though this was never taken up by his support staff ;
    those who gave a positive spin to Danny’s life and fun reports of his days with film and photos;
    the stables which took him on when Riding for the Disabled turned him down (epilepsy) so he could trot and canter
    Then there’s the friends and supporters who attend difficult meetings with you, often those with sons with autism and LD who have their own battles, friends made on the Camino and just the acquaintances who are outraged that Danny’s death happened and noone has accepted any responsibility. Then there’s people like George and Beverley who are in a league of their own!

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