One of those days

I went to work this morning via a brief meeting with Monitor. Based near Waterloo Station. After publication of the Mazars review in December I was invited to meet with Monitor to:

discuss the process which we are going through, jointly with the CQC, to establish the key issues which require addressing to ensure improvements are made at the trust and that the wider concerns raised by the report are addressed.

I chased up this meeting last Friday and it was arranged for 9am today with the CEO, Medical and Nursing Directors and Complaints Manager. Assuming the key issues issue was still open, I set off on the Oxford Tube at 6am. A front of the bus experience.

image (19)

After introductions, the CEO began by apologising for LB’s death. Bit odd, really after all this time but a solid apology. I wondered if the Tom effect is spreading. We moved on to what Monitor is going to do about the Mazars review and Sloven. Very little really. The Mazars review is being read carefully, CQC will inspect and if failings are identified Monitor will act on them. Apparently. There was no evidence to remove Board Directors/CEO.

At this point my heart slowly melted. Having sat through over two hours of the Sloven ‘extraordinary board meeting’ yesterday when the only two words the CEO and Board Chair could string together were ‘action’ and ‘plan’. And the action plan they presented lacked clarity and included typos. Hearing My Life My Choice trustees describe their concern about safety in Slovens ‘care’. Having read the Mazars review. Having experienced over two years of relentlessly crap actions. Having heard so many other harrowing tales from families…

These words made no sense to me.

Sitting round a table, on the third floor of Wellington House, I lamely raised a few issues. Like how it probably wasn’t a good idea to take shiny new Sloven policies at face value. Despite their epilepsy toolkit no Sloven staff member at LB’s inquest demonstrated any knowledge of epilepsy two years after his death. And so on. Stuff written over and over again here and in other spaces.

There was no discussion. Whether that was because I was clearly so incredulous, enraged and upset or whether it was because there wasn’t really anything to be discussed I don’t know. Action was clearly already decided and agreed with Sloven. I asked what I was doing there. To receive a formal apology was the answer. The meeting ended at 9.06am. Publication of the Monitor press release pretty much beat me back to Oxford. A six hour round trip. For a six minute meeting.


So what is the action? Sloven have agreed to implement the Mazars recommendations, get expert assurance on these improvements and Monitor will appoint an Improvement Director “to support and challenge the trust as it fixes its problems” I’m reminded of some pretty bizarre conversations back in 2014 when we were encouraged by a few people, including David Nicholson, to meet with the Sloven CEO to help her to understand where she was going wrong and ‘find her way’. How anyone can maintain a leadership role when they are so clearly out of their depth is beyond me.

Of course there were Monitor enforcement actions back in 2013. And Sloven put the same jolly spin then as they have now; just a few weeks of ‘working with Monitor’.

On the way to work, I just thought about how we were kidding ourselves that anyone (senior) in health and social care really gave a shit about learning disabled people. The Mazars review is a truly shocking report and the only appropriate response so far has been demonstrated by the discussion in the House of Commons when it was leaked. I was reminded of Rob Greig’s anecdote when he was told years ago by a CEO that jobs aren’t lost over the learning disability agenda.

We ain’t really progressed at all. Sadly. #JusticeforLB has contributed more than than most of the highly paid/rewarded people/organisations in this area for two years now. We have no budget and the work is done in our spare time. That is, pretty much every minute outside of our working hours. I think it’s fair to say that morale in the shed is pretty low right now. I’m just glad we’ve shone a fierce light on the shameful practices and fakery of NHS and local authority practices. Practices done and sustained by people.

Update: I received a briefing about the Monitor meeting this morning (13th Jan) from NHS England. You couldn’t make it up. It says Monitor will announce their actions on Jan 12th. So the 9am meeting was purely about squeezing in a meeting with me before then. A meeting for the sake of saying they’d met us. Breathtaking. Six hours travel for a 6 minute meeting. And no expenses paid.






19 thoughts on “One of those days

  1. Sarah, it is truly shocking to waste your time so heedlessly – again. I cannot express adequately how much I admire what you have done. You may need a rest but don’t despair. You have started something important and we won’t stop, even if you have to ease up for a while. Things will change as a result of your heroic campaign

    • Jannie – you must have been writing your comments at the same time I was writing mine. Indeed I’m spending as much time postong comments of Sara’s blog as I am developing my own. As mine is relatively new I could do with a few visitors. You will find stuff there, specially on the blog page that you will not find on Sara’s – such as an open email sent to the Regulators and Commissioners on advance of the recent ‘bored’ meeting. Some pages are not fully developed – the most developed are the ‘about’ and ‘blog’ pages. You will realise also the significance of the CRASH logo!

  2. Sara – at least you got a face-to-face with Monitor’s CEO. All I get it are ‘Dear John’ letters from Tom Grimes (the Complaints Manager) – in 2013, he (and a colleague) spent taxpayers’ money on an afternoon out in Southampton and spent two hours telling me what they would not do, i.e. act on my complaint, thereby wasting three hours of my time too (including travelling). Even last week and, with all the knowledge of my case and the Mazars Review, Tom Grimes refused to meet without a full written complaint – and even then wouldn’t guarantee a meeting – why should I waste my time preparing a written complaint with supporting evidence when I am 99% sure it will result in another Dear John response. (That’s a rhetorical question by the way).
    I was told today that I would receive a written reply to last week’s open email to Monitor’s CEO but they wouldn’t even guarantee it would be signed by him. I wonder what the excuses will be but they still won’t guarantee sending an observer to the next ‘Bored’ and Governors meetings – even though (from memory) a couple of Sloven’s Directors murmured that it would be a good idea.

  3. Dear Sara
    You have done a very great deal even if it doesn’t feel like it at the moment. What you have achieved and painstakingly recorded will stand, be accessible & others will be able to use & build on it. JusticeforLB won’t go away or be forgotten.
    You have used your gifts of articulateness, thorough attention to detail, humour, social media savvy and persistence to huge effect. But, as you say, this has been a massive task for yourself and your family, albeit wholeheartedly undertaken. I don’t believe anyone else could have achieved as much as you have done, at such a dreadful time.
    You now need to have time for yourselves. Give yourself permission to do other trivial things and enjoy them! You have all done LB proud!
    Also you have let other families see they are not alone, those who saw things were wrong, who wanted to fight for justice but didn’t know where or how to start and were too intimidated & patronised by the KPs of this world to try.
    Don’t underestimate what you’ve done. You may not have got as far as you hoped, but you’ve laid a glowing trail which can’t be extinguished.

    • agree wholeheartedly with wisegrannie, improvement person incoming and then who knows ? a few more measures ? the trail is glowing.

  4. Sara

    Running people into the wall is what they do.

    But our love for our sons and daughters is stronger than them.

    A strong army of people/families marches alongside you. All are with you. So many of us have lived with sneering dismissals; some of us for half a life time. The disrespect and dismissals do eventually become a flea we brush off straightened shoulders, we just move on. We keep on for we can do no other. They dehumanise, hurt and kill (by whatever means) our beautiful boys and our girls.

    For a long time it disables us and weakens us. For It is so bloody unjust,so f’ing wrong and so f’ing unfair.

    But gradually we rise over it. We stand so much taller. We have all learned that we are dealing with complete turds with too much power.
    Cap fits snuggly.

    At first we cannot believe they can get away with it. Helps not a jot when the lowest of the low life chuck yet another bucket of ordure over us, just whenever they feel like it. (And while ‘good’ people who could prevent it, challenge it, change it, sit silent for fear of losing their fat status. They win awards for it and not in spite of it.

    But my amazing son, all our sons and daughters, stand 100 miles higher than the people who broke him/them. We are all better than them.

    And we are no longer alone.

    We are together, and we are getting ever stronger together.



    • Sara – as you know, there are many weary ‘survivors’ of near-misses at Sloven’s hands with you too. I wonder when NHS England will ask Mazars to investigate ‘near-misses’ – at least one of which could have saved Connor if taken seriously and investigated properly. Truth is it would take a lot of ‘bottle’ by NHS England to call in Mazars again – they are far too diligent and independently minded for NHS England to take the risk!

  5. Yes, Sara I agree with all the comments which were made this morning by your friends. Our sons and daughters are love of our lives and what you have achieved on your behalf and our behalf is beyond words. You have put the “officials” to shame, even so they have hard skin and they are not showing it. They know full well their guilt and they have to live with it. There must be thousands of families out there who would like to have done what you done, but have no confidence or knowledge how to go about it. So, thank you very much for all your hard work. It’s not finished, but hopefully there will be positive changes s l o w l y implemented and some of the people responsible for the shambles in NHS will be replaced.

  6. Upon reading the Black Report 1980 and the Acheson Report 1998 I discovered that both reports urged the government to make the Alpha Foetal Protein (AFP) blood test available to every pregnant mother as a matter of urgency. This is the blood test that can indicate Downs Syndrome.

    The government’s real agenda for people with learning difficulties is this
    ‘Stop the buggers from being born in the first place’.

    • I thinks this the basis for some of the near? eugenic attitudes we can see in high ‘places’..

      I think that there is a hang over from cock eyed perceptions that the parent’s dodgy genes are to blame, so their children are better not born. And if they slip through the abortion net they are seen as annoying (non conforming) costs – not person/people.

      Some of these dopey attitudes of 19th century and before, seemed to linger at the farce meeting with the oligarchs at SHFT the other day. Where they forgot that they have their sapiential power and salaries from us. Seemingly, they just cannot see what the fuss is all about if a few more awkward costs are shaken off the
      budget tree ?

      • Great comment but please bear in mid that, in addition to those with learning difficulties and the families of suicide patients, there are a number of other SHNFT survivors of near-misses (including the physically unwell) who cannot get justice from Sloven too. They employ exactly the same tactics – deny everything and try to grind them into submission as part of the complaints process hoping they’ll give up. Would they (or NHS England) invite Mazars in to forensically investigate those – YOU BET THEY WON’T. In fact, I doubt that Mazars will get any more work from the NHS – they are far too robust and independent.

  7. Sara you and your fellow supporters have uncovered the underbelly of a culture in the NHS which discriminates against people with a learning disability. You are all heroes.

    When did our much loved NHS turn into this monster? When did the PR machine become more important than the patients. Who in the NHS workforce needs to do their job better by looking at flotillas of ships, writing on pants or finding leaderlove. What kind of workforce is so gullible. This is shit. Just a waste of much needed money.

    The lessons are being learned so we are told. Junior doctors learn lessons. Apprentices learn lessons. Their small wages mirror the fact that they are unqualified. CEO;s who are paid mega bucks should have learnt their trade. They are qualified. They should not be taking a huge wage while they start to learn all over again.

    • No comfort in this but have had an email from an old friend in Oz – they have the same problems with their public health service too. When I’ve redacted a few names and information that’s best left between friends – such as our behaviour at University – I’ll publish it on my blog!

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