Records and the internet web log

In a superlative moment of classiness, the OCC Director of Social Care sent me a red flagged email at 5pm this evening with a revised version of his shoddy little review. And responses to my concerns.

Yep. 5pm on a Friday evening. I hadn’t had a bad day up to then really. I had an emergency appointment at the dentist because my tooth cracked the other day. No big deal in the toxic world of trying to get accountability from public bodies. I then worked at home reading a thesis and catching up on other tasks. Halfway through reviewing a book chapter (deadline today/ironically about social media use) the email pinged in. End of that review. Instead the typical and now familiar deeply intense rage, frustration, bewilderment and distress.

LB died. He’s dead.

Why the fuck are we dealing with shite still?

[Brief background to the review; OCC commissioned an external consultant without telling us. They sent the review to Verita. Verita said we should see it. OCC emailed it without warning back in March. Under duress I identified the inaccuracies.]

The only good thing I can say about this latest documentation is that a potential PhD student now has more ‘riches’ to pore through and analyse in trying to understand the workings of public bodies under challenge.

The revisions to the original report? Extraordinary.

A few examples…; SR says x, y or z but “there is no record on file to this effect”. “There is no file record of that contact. SR advises that it took place.” “The Care Manager arranged a further visit on 31st August to meet CS, but the records indicate that this was cancelled by the family but SR has advised that she asked for the meeting to be rescheduled, which is not recorded on the file.” He even states there must have been two meetings on one day because I said the care manager wasn’t present and the record says she was.

What is actually happening here? Why do ‘records’ trump what happened? Apparently there is no ‘record’ that I waited in all day for a visit from the care manager who was a no show. Parents/families now responsible for making sure social services keep accurate records…

What makes these partial, half arsed and biased ‘records’ the ‘truth’?  I asked OCC to look at the different interpretations of one afternoon where the OCC ‘recorded’ version was sanitised off the planet. My blog presented an alternative description of an afternoon etched in my brain.

Completely misunderstanding my point, the response today was;

SR has recorded a different perspective on her internet web log. Having reflected on the implications of this comment, I have added a recommendation to my report that OCC provide guidelines to staff, service users and the public that postings on web based social media are not part of the case management or complaints and comments procedures. I do not consider it appropriate to comment on a social media posting.

There is a clear issue here that public bodies don’t get social media and see it as something threatening. Which it isn’t and shouldn’t be. [This was in evidence earlier today. Sloven while hosting a shindig for their learning disability/mental health staff started blocking campaigners on twitter when challenged about inaccuracies (or simply asked questions)].

I’m not claiming my version of what happened that afternoon is more ‘truthful’ or that local authorities/NHS Trusts should be looking for clues about their patient care on blogs or social media. I’m saying that ‘official records’ are not infallible. They are created by people. Like this blog is. Or any other account of something. It’s ludicrous, short sighted and problematic to only accept what is written in a particular space, by a particular ‘professional’, as ‘truth’. As the revisions of this craphole report demonstrate.

I suspect part of the (sustained/tooth shattering) battering we are getting from Sloven and OCC is due to our use of social media. The ‘records’ are under threat. Emails/tweets/posts contradict and challenge official versions. We’re shining an unwelcome light on stuff that has probably gone on in darkness for years. And doing things the ‘wrong way’.

You can’t shout down, bully, deny or try to ignore what is perfectly legitimate challenge to a system that is steeped in wrongness. A wrongness recognised by those beyond LB’s family or friends. To try to do so is to show contempt for democratic processes. For basic human rights.

The only way there will be any resolution – not for us because that clearly ain’t going to happen – is for NHS Trusts, local authorities, regulators, the Department of Health, government, etc, to embrace the use of social media. To engage with patients, people, constituents and use these interactions as a resource. Something valuable and insightful, not something to be feared. Something to build on, work together and thrash through challenges, obstacles, difficulties…

As much as OCC, Sloven and others may resist or dislike it, the future is the internet web log.

28 thoughts on “Records and the internet web log

  1. Sara you are spot on as usual. These so called professionals act like naughty little children who put their hands over their ears and sing la, la, la when they do not want to hear the truth. To think that these very people have power over so many vulnerable lives. Shocking that they are morally redundant. Shocking that they cannot accept responsibility for their actions. Shocking that they duck and dive like spivs.

    Trying to shut you up only has the opposite effect of making you more powerful. They condemn themselves when they try to condemn you. Most right minded people are right behind you. I know I do not have the right to say keep on fighting. It is not me that is feeling like a wretch every time they throw something else at you. The only consolation I can offer is the knowledge that truth is on your side and many many people (your supporters) know that too

  2. I was talking to someone recently who gas said she will say this more publicly, but she told me in several places where she has attended MDT meetings ” the professionals look at each other and diagnose mothers quite often with PD” not knowing what it was I let her carry on and then asked. ” personality disorder” she said. It’s what they nod and agree with each other. I’m so gobsmacked! But yes it fits and it’s true.of them I’m sure. You’re to be cured! She said it’s far more prevalent in Health settings and that figures too.

    • Actually and probably it’s the fact the mothers have a personality in the first place which annoys them, them who are 9 to 5 jobsworths who leave their souls and their hearts at the door.

  3. I read your entire blog. I’m exhausted and so so angry at the people, the human beings who were and are paid and allegedly trained to “care” for others including your son.

    My own 15 year old son who is autistic suffered a seizure for the first time about a month ago. It was the middle of the night and had I not heard him Choking on his own tongue he would have died. A trip to emergency confirmed tonic clonic seizure. The doctor said one seizure means nothing, that we would have to ” wait for two more”. Unthinkable.

    The reason I am imparting this personal information to you and your readers is to advise them not to wait to keep journals or diarise their loved ones’ medical episodes and equally to keep co temperaneous notes of all that happens between them and medics. Your blog has taught me that. I pray to God you receive justice for what they did to your beautiful son Siobhan. I also pray that the 10’s of thousands of people who have an LD AND an “LB” support you in your battle for justice and learn that one day the horror that you are going through could visit them unless they speak up. Trust no one with your children’s care, if they have a learning disability. It is NOT the case of just a few bad apples working in the NHS care “industry”. Lack of care or concern for people with LD is endemic. Much love to you Siobhan. It was only when my son had a huge seizure that I discovered your blog and realised the state of play out there regarding “care”. They are playing with our kids’ lives and few care one jot.

    • We had that exact experience getting Connor diagnosed with epilepsy. All detailed on these pages. And a denial of his epilepsy is what led to his death. Ironically, when he was eventually diagnosed after several tonic clinic seizures, plus others, he was never invited to first fit clinic or given any info. It was a second class citizen type of epilepsy. Good plan with your son.

  4. There was no record?
    I fought for four long years to engage the LA in listening to me. My son who has Down’s and lives in supported living, from being a smart fully physically fit and cheerful man, slowly become a shambling and depressed man with, at the end of the 4 long years of my watching, this huge ‘lorry’ of deterioration, trundling down on him, a shaggy dirty unshaved man. The staff called him ‘captain birds eye’. They, the LA, I begged staff, and wrote to the director and met with him and his head of Adult care, all blamed him and would not check for me as he was an adult, my sons choice, and I was only a family relative. It was my son’s ‘choice’ to always look at the floor, never at people, look so unhappy and shamble bearded and dirty like a tramp.
    I took him ‘kidnapped him, to a private neurologist, and was warned by the LA that the police could be informed.

    The neurologist found that my son had a major, calcified, prolapse on a spinal disc. Some five years before I had been informed that my son was at home with a pulled muscle in his arm. He was in a lot of pain at the time.
    Post the neurology diagnosis, I made a complaint and the first, the internal, investigation by an excellent Adult care manager, exposed that a number of serious neglects had occurred. (She left soon after this) I always suspected, but can not prove that her first report had been heavily redacted. I was present when my son talked to her about how his rehab officer had forced him to lift heavy boxes over weeks, where he had said repeatedly ‘I cannot do this they are too heavy’. The man had said ‘just do it’. Another person with LD was present each time and supported this. My son fell in a agony with a ‘pulled muscle in his arm’. The rehab officer rushed to a supermarket and bought a large box of pain killers which he left with my son who cannot swallow pills. The worker made NO RECORD of this, Later. that week my son was rushed to hospital by a family friend, my son was vomiting and in agony of pain in his arm. He was give more pain killers and no x ray! The LA had done nothing. The hospital had accepted the ‘pulled muscle diagnosis made by the worker’.

    My son walked around with a prolapsed disc in his spine, for plus 4 years with me screaming soundlessly ‘please listen to me and help him’. He, gradually getting more and more disabled, and I could not intervene. He can barely walk now, He uses a wheel chair. He falls easily and cannot balance to shave……….. the reason for the beard. There has been too many years since, used up battling for safe care, but my confident and wise son is back, for the moment.

    Afterr many months, the independent complaints panel found many serious neglects and advised the LA to meet us, to listen to us, and to use us in training. The LA refused to do either.

    After another 18 months of stress and anxiety, the LGO found the many serious neglects and fined the LA a very nominal sum. They, LGO, could not report on or act on the manner the injury was received, BECAUSE THERE WAS NO RECORD…funny that?

  5. All I can say is on behalf of any findings of “no record” that equates to serious maladministration without question, on top of everything else.

  6. .SAra
    Sorry for taking up so much space, but……….I feel that it is important to add, that my efforts to help my son were all consuming and massive. Life consuming. Brutally costly to every other aspect of my and my families lives. I did all I could, and like you Sara I was a researcher and I am a long in tooth professional and a consultant. All I was and all that I am, was not enough, I could not protect my son. And he has suffered much. There were constant inferences around ‘who does she think she is’. It is ….’s mum again.

    There are real dangers in offering our stories on social media, for not much has changed in the power that LA’s and NHS can influence over our sons and daughters. They can give support and they can take it away. But without us speaking up, nothing will change? And we fail our sons and daughters again.

    When my sons deterioration first became obvious, I challenged this wherever and with who ever I could. But I did not know what was going on. I was told he shambled because was too mean to pay for podiatry. So I paid for podiatry. Then I found that my son had no money, I challenged this for I could not believe it. I was told verbally and in writing (LA) that he spent too much. No one checked, till I pushed hard, that he was being vastly overcharged for his care, and his benefits were underpaid for a very long time. I had tried to check his benefits but had no authority. I worked tirelessly but the LA had made up its mind. It talked to each other, and they agreed with each other. All staff repeated the same blame and defence. . They agreed/refused to look.

    Nothing I said could change it’s mind. I hope people employed in LA’s/NHS who hold this power currently, read this and get a flavour of the pain and the wasted lives. We are not spiteful deluded, personality damaged people, we are just mums and dads who live these grief stained wasted lives begging you to listen….. while you agree the truth. amongst yourselves……………

    • PS. Both the independent complaints panel and LGO stated that I should be compensated (unsought by me) with £250, increased to £350 by LGO, for my long struggle and for my resilience in fighting for justice for my son. The LA refused initially for ‘ ‘no way to assess or compensate for emotional ” costs. .That says it all?
      .

    • Oh weary mother I so get what you are saying about what simply amounts to nothing more than large scale collusion. I too have had all this crap along with so many other families. But I totally support Connor`s family in this fight, ( and Nico`s) and yes it will be a fight, as mothers and fathers we know this from our own experiences. Something good has to come from this, its what keeps me going. This could finally be the smack in the face that these people need to wake up and see that this arrogant, bullying attitude has to stop. We should never be afraid to challenge what we feel is wrong.

      • Deb
        Me too, while I still breathe.

        There was a ‘good’ senior manager who was stymied by the (as I found it) rotten culture, and his inability to influence it. He insisted on answering every one of my emails and all my calls. He chased up all the empty paper promises of improvement that died such early deaths. This in spite of his being told repeatedly to stop, eg that he was working below his pay grade and to delegate to people he knew could not or would not. …..

        He came to see us, my son and I, on the day he moved on to another job, traveling quite a distance to do this. He held my hand and thanked me for being ‘so patient’.

        He looked long and sadly at my son and then at me, and said no more.

        There are many ‘good’ people working in LA’s, There will be LA’s that behave differently. There are people who would change things if they could. The Ombudsman said in his report, that this LA’s culture would not be improved, easily or quickly ….such was the culture.

      • Yes weary mother you are right, there are some good people working within both LA`s and care providers, I have met them too. Sadly as you have found – they do not last long, I guess if they don’t conform to the crap accepted standards that have been going on for decades, they rightly do move on, I would too.

  7. Sam, god knows I’m not defending “Grown Ups” ( a phrase my pal with a son with CP and complex health needs and I used to talk about any professional involved in our sons’ care – we were always “just the mums”) but I just wanted to add a bit about seizures.

    My son, 20, with Lowe Syndrome became epileptic when he was 7, he had 5 tonic clonics before he was put on medication. I was going mental. Because we had the great fortune of hearing a lecture from a neurology professor who is on the medical and scientific board of the Lowe Syndrome Association and who has since become a good family friend.

    Back in the day, a study was done following a large group of people who had presented with a seizure, (a population of the general public, not folks with LDs) They recorded that they didn’t give anyone medication as was the norm and followed them up to see what happened next. What they found was that the vast majority only had that one seizure and that it would have been inappropriate to give them meds. They kept studying all those in the group that had a 2nd seizure. Again, no meds were given. They found that almost 100% of those having 2 seizures went on to have a third.

    So the rationale is to wait and see if it is true epilepsy and not isolated seizures, because medicating people quickly may be, for most, the wrong thing to do. (The study is pretty old now, from the early 90’s, so maybe the thinking now is to wait till after the third seizure before meds)

    The situation for folks with a neurological disorder should be more straightforward, where there is a reason to think the architecture of the brain isn’t as usual and therefore more prone to seizure activity, so that waiting for the third seizure was horrible.

    However, we fell through the cracks by being admitted locally through A&E in Fife after a prolonged seizure ( No. 3 ) but his neurologist was at sick kids in Edinburgh and docs really don’t like stepping on each other’s toes. A letter got lost or some such shite explanation. It got sorted eventually but our complaint was returned with that good old standby of “we’re sorry you feel that way”.
    Not that your wrong behaviours/processes that caused the delay in getting medication caused us to feel that way.

    Anyway, it was just to say that despite your doctor failing to adequately explain the reason why they didn’t give medication right away, they were actually doing the right thing medically.
    What they failed also in was in honesty and compassion.

    • My son had his first seizure when he was recovering from an hip operation. He had it in hospital. He was 17 years old. We were hoping that this was a one off because the hospital stay was quite traumatic. He was confined to bed with a long wooden pole keeping his legs in position. He was eventually diagnosed with epilepsy after he had two more fits in as many months in the night at home. He was medicated on Carbamazepine. He was fit free for 5 years. After five years he began to have startle fits. He was medicated with Lamotrigine. He began to get depressed and angry. We now believe Lamotrigine caused his decline in mood.

      Having taken epilepsy medication for over 25 years he is left with osteoporosis and he has also become mentally ill with hallucinations. I feel like Weary Mother who watched the decline in her son and felt helpless to get any help. Her post made we weep with the unfairness of it all. Epilepsy medication can be a blessing in the beginning, but can often lead to psychosis and aggression. especially taken over many years. My son’s psychiatrist is a bully. We have no rapport with him and I feel sick every time we have to see him. His reports to my doctor are full of inaccuracies and he has blackened our names to the extent that I now have to write to my GP every time to put the record straight.

      Sara was Connor ever medicated for his epilepsy at all? If he was maybe his medication caused his decline in mood.

  8. just so terrible to read this post, so many positive thoughts around the film and the protective care scheme. The Friday contacts always leave the home and everyone around full of tension and pain, quite sure that is the intention. Division over keeping going and letting ‘it’ go surface as surely as the teeth,skin,sleep and digestive ills come onboard. Shameful tactics.

    • I confess I expected you Sara to be treated differently initially because you are an academic , clearly not. In the early days a social worker once turned to me and said ” I will call you Mum ” I squirmed with unease for myself and my daughter whom I was trying to assist with communicating as anonymously as I could. Are all Mothers that assist from birth or as I did from the disabling event/illness viewed as opponents to NHS and LA staff. Wake up call OCC, Mum is still there and we hear her.

  9. my son was diagnosed with Lennox Gastaut syndrome epilepsy at age 2. I hold all his medical notes EEGs, etc. I passed all these notes on to the Court of Protection in 2006 when Martin and were first served with affedavits. The notes diappeared and appeared over the next 2 years (and up until now too). The judge decided “Mrs Buckley believes all Martin’s problems stem from his epilepsy. The evidence I have before me does not confirm this”. Martin was diagnosed and treated in Switzerland until he was 17 – its another world. What I am saying is even if you have all the notes etc. “they” wont have the foggiest idea what epilepsy is. I asked for a 1 hour EEG for the Court and it took months to get one. We went back to Switzerland on holiday and it took 24 hours.

  10. We have an ongoing ‘issue’ with our LA regarding CYP social care. Nothing in any way as horrific as your situation but nevertheless it’s a shocking, time consuming journey through revelations that are, we think, indicative of the woeful goings on throughout the organisation.

    To date LA has issued no timely responses, had no contemporaneous file records, carried out a complaint process using the WRONG process (and then couldn’t even follow this properly!).

    In summary – all complaints were upheld… with no reason being given for incorrect process other than, effectively, “we’ve always done it this way”… and the LA didn’t admit to the wrong process until AFTER completing ‘complaint review’ using the wrong one and taking 5+months to do so. Utterly shambolic. Outcome seems to be ‘blame the admin/IT/whoever’ from the manager with no change to procedure above saying “we will have a meeting” – they never met with us about our concerns, can’t supply the detailed records of phone calls, letters and emails we can. But this appears not to be considered maladministration by them or the LGO. We beg to differ and assert that if the processes and records were correct then errors would be easier to spot and effectiveness would be improved… not to mention the safety of the young people whose lives are impacted by the shoddy carryings on. However, throughout the process we are the ones pushing for answers, diarising response dates and chasing for both the LA and the LGO to DO SOMETHING. Just plain wrong.

    Records are multi-faceted… to not have any records does not mean something didn’t happen – it just means that, for whatever reason, the record was not made/admitted to/bothered with by the body/person saying they have no record. We know of meetings “in corridors” that have no minutes because “they were just chats”… but this does not mean decisions were not made! We have been laughed at by LA ‘officers’ telling us “parents have to do what we say… ” and being very pleased about this indeed. Seems it’s not about the YP to them. Again, shocking.

    These are public servants and should be providing a safe, timely and efficient service to its users. Tenacity, determination and the hide of a rhino required….

    • All of this sounds so familiar to experiences that I have had with an LA and an NHS provider, but don’t bother with an LGO they are totally biased. I made my complaint to them about both LA and provider not following the MCA when making decisions about my non verbal son without consulting with me. And for overspending/abusing his disability benefit – it was a waste of time and effort. Maladministration means absolute zilch to them sorry to say and no accountability at all.

  11. Over weekend and since , I have discussed my comments above, with friends. Writing them has made me ill with their recollection. My friends asked me why my son did not tell me the connection between his being made to lift the boxes etc etc, and other neglects,before this all emerged in the complaints investigation.

    During my vain attempts to find out what was going on, I rattled a number of cages? and I was told by a worker (described negatively at best by many) that my son no longer wished me to speak to him, or for him. I was to no longer attend reviews. My son had signed to that effect. I was destroyed. I was beaten.

    It emerged from my son during the internal investigations, that a worker had said to my son, ‘are you a child and not an adult that your mum has to speak up for you. He told me and investigator that he was being a child if he spoke up, so agreed reluctantly to not have me at his reviews, or tell people ‘things’.

    This fact was raised at the independent complaints panel. The excellent internal interviewer, who was no longer employed by the LA, (who held my son and me before we went into the meeting) was called to discuss her report. She said the comments were felt to be (by LA) motivated by misguided political correctness and were not intimidation. The chair of the panel told the Director to take this issue, of potentially silencing a vulnerable person, to the Abuse of Vulnerable People process. I confronted the worker (my feelings still boiling) now long promoted, only a couple of years ago. She knew nothing of my complaint. Had never been approached by the process. It appears her damaging words to my son were never put before this process. She was still being described by many, staff and LD people, in very negative terms.

    I believe that my son and I suffered for all these hideous years from a mixture of: an organisational culture of weak leadership etc by Members and Officers, poor governance, an aggressive blame and defence style, corresponding levels of impotence, blame, defence and fear, and poor management in/of staff…and from collective collusive misunderstandings… and probably many other things. I do not believe that the majority of people aimed to do bad things..

    I agree with all Sara and others have said in this blog. Until all ‘paid by the Public’, people are free to speak up honestly about all their concerns; incompetencies, mistakes and abuses… we must record everything.

    For our sons and daughters, and us, are not the only victims.

  12. Yes yes yes! Having similar issues here of late. It’s as if people are scared of the truth. My thoughts? Don’t do or say anything that you wouldn’t be happy to see on social media, then you can sleep easy. I’m not out to slate or publicly defame anyone, I just like to be honest. Which if everyone else was being, would be a much less stressful way to get through life.

  13. If it wasn’t so enraging, it would be bloody hilarious that these jumped-up jacks-in-office could even think, never mind try to convince anybody with two brain cells to rub together, that a Local Authority officer scribbling a scrappy note and shoving it into an overstuffed and unread file somewhere constitutes THE RECORD – a definitive statement that, simply by virtue of being in the Council’s possession, is somehow transmuted into carved-on-stone Holy Writ even more unchangeable than the Laws of the Medes and Persians.

    Helloooo OCC! Listen up! A rainforest’s-worth of paper can’t exonerate you from the fact that as a result of careless, couldn’t-care-less actions by your council, including your failures to provide community services and your failures in commissioning and monitoring inpatient ones, LB ended up in a place that was extremely unsafe and, because it was so appallingly unsafe, HE DIED THERE.

    Too right they don’t get social media. When one jokey tweet can be enough to get some hapless nincompoop hauled up in court on a terrorism charge, damn’ tooting a contemporaneous blog-post is an admissible alternative record of events. OCC are standing on quicksand, they must surely know it and they *still* can’t stop squirming and getting themselves in ever deeper.

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