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A New Conversation

July 12, 2017

I’ve been thinking for ages of writing a pamphlet of “Tips”. One of the sections would be tips on how to get social care professionals to talk about the things they don’t want to talk about.

Take “challenging behaviour”. We’ve got to stop using that phrase. We’ve got to name it for what it is – signs of distress. The tricky bit is, if your son or daughter is in an ATU and having their detention lengthened because they’re a nice little earner for the provider, they won’t want to talk about signs of distress because it will mean acknowledging they are causing the distress. But even if you can’t get them to talk about what you want to talk about, you still don’t have to talk about what they want to talk about.

How to shut them up? Last night Steven didn’t fancy going to sleep. He sang his way through the night until 3am. Everytime the support worker went into his room to encourage him to go to sleep, Steven would say:

“Don’t talk about sleep Alan” and started singing Johnny Cash to the tune of Vindaloo. This would set him off giggling hysterically at his own joke. But it did the trick. It stopped Alan talking about sleep.

So, try it. Everytime a professional trys to increase their profit margins by dismissing signs of distress and turning it into challenging behaviour, stop them short by singing Johnny Cash to the tune of Vindaloo.

The other phrase that we must never ever be drawn into is “complex needs”. It’s a shifter of responsibility, a justification for anything, a checkmate conversation killer, all rolled into one. Died a preventable death? Ah yes, but she had complex needs. Entering his 16th year in an ATU? Ah yes, but he has complex needs. LA won’t fund a home care package? Ah yes, we cannot find a provider that can manage his complex needs. It’s the get out clause of all get out clauses. It’s the king of multi disciplinary one-upmanship.

My tip for changing the discourse of “complex needs” requires a bit of preparation. You need to go to your local supermarket before the multi disciplinary team meeting and purchase the largest trifle they sell.

The meeting begins. You want to talk about how the over medication of your son in the ATU is causing his organs to fail. You know it is killing him. You want to discuss the reasons for his clear distress. As sure as eggs are eggs, one of the professionals will say, “I hear what you’re saying but we’re dealing with extremely complex needs here”.

Tip number two. Take the trifle out of your bag and remove the film lid. In slow motion, allow your head to fall smack bang into the middle of the trifle. You then have a small window of opportunity, during the ensuing shocked silence, to change the course of the narrative and speak the truth. Seize the day!

There is another alternative. You could just say, “I refuse to use the language of challenging behaviour and complex needs” and just sit in silence. Trouble is that will either piss them off or be interpreted as acquiescence. Risky.

Take my advice. Try my tips. What have you got to lose, except your dignity as your wipe custard off your eyebrows.

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8 Comments
  1. “I hear what you are saying” is another of those Top Trumps phrases.

    It *means*, “That’s quite enough nonsensical windbagging from you; now stop wasting my time, shut up and be told.”

  2. weary mother permalink

    Having just returned home from an unplanned mini break in NHS I have some thoughts on the concept of complex needs.

    i was collected cheerfully – in middle of night – and routed seamlessly through numerous tests and to my bed. Not one gap in the process – not one blip in the system – no scurrying off to the kitchen for a coffee or group co-counselling session.

    These Acute health teams have had brutal resource cuts – yet still deal with the pressure and complexity of needs.. They do it in a seamless way – as a team. They reassure us and treat us as peers – as human beings. They work in a visibly fluid.way – from test to test, procedure to procedure all clicks together – till a crises person is in bed with all the tubes and wires connected.

    The staff treated me with smooth calm, warm and reassuring competence. From the porters to consultant they called me by my first name. i was from time to time asked what I preferred, but the question was always as to a friend – a peer. How often are we treated in this way by social care professionals ?. When I was a social worker I was always called by my first name by other professionals. As a parent I am almost always given my Mrs… , a distancing tool; a looking down tactic to put us in our place. My learning disabled son is invariably called by his first name..and is not invited to choose.

    When was the last time a crises was treated in this way by Social Care professionals or their Public employers. Try obtaining immediate crises help over the phone ? Two bean tins on a string would be as fast and as useful.

    Assessment.of need in the NHS in a crises however complex – is crisp, caring and competent – Social Care in a crises is…..answers on a ….

    All the way through the last few days I compared NHS Acute care; the integrated teams – the deep knowledge and skill, fluid systems and co-ordinated behaviour – with that of what I see and experience Public Adult Social Care.

    Perhaps LA’s could ponder on why they behave so differently.

  3. weary mother permalink

    PS
    For balance: I must add that each time my son and or his flat mat have been admitted to hospital in crises – all prior to the ward has been very kind and competent. However – I or support worker have always been present on admission. The minor to danger care issues emerged on the ward; where a link in the acute care chain is missing – that is a learning disability, and or autism nurse. My sons flatmate could have died from this lack.

    + I discovered as recent patient (light bulb moment) why on his most recent hospital stay my son ate sandwiches only. The long menu is read to all patients very quickly, my son has a serious speech disability and within the time offered could have only managed to say – ‘sandwich’.

    • I think acute care teams are the best too. My consultants were amazing. I’ve had two ops and each time I was so well cared for by the whole team. It stays with you, that feeling of people being so capable.
      Learning disability teams have been mostly inactive, with talk amongst themselves being the main work, not following through tasks, and even talk isn’t minuted properly.
      A day centre assessing people with LD had some good nurses, and helped for a short while, but the ATU had no such facilities.
      If talk led to positive results and activities, I’d still be pleased, and the most expert professionals support me as they see I improve things. But I honestly can’t say the team overall improved health – there was no therapy.

      Pauline’s ideal team below … I think doesn’t exist.
      LD teams also have a lot of time off (holidays) whereas acute care (who deal with a lot of trauma, and save lives) don’t, which is why there’s no one available to talk to if you need them.

      • weary mother permalink

        I agree with all you say here – FF2016

        It is surely a paradox? Or something else ?

        In my experience multi disciplinary teams cost a fortune each time they sit together – and almost always seem to me like a day out for chums. With a worn out family sitting outside on a hard chair till all the chummy chats are over,

        On the one hand we (‘dependency fostering’ etc etc ) families are told repeatedly in these reviews – that we know little if anything about our son or daughter – and, set at our safe status distance – are chided to leave the assessment of needs and outcomes to ‘them’ the experts.

        Anxious interjection into the process – is seen at best as as – ‘undermining’. Less veiled threats lie under the surface ?

        Over the last years assessors of my son and his flat mate’s needs, have been a promoted for the role – (cheaper) care assistant or bought in for the brief and brutal task, locums. None of whom have met us before.

        Each time the multi handicapped seriously learning disabled ‘set of needs’ (my son and flat mate)required no health care support – or any other kind (much) – of support. Food seen the only necessity.

        All else a ‘want’ not a ‘need’.

        From these illegal assessments – moderate to serious needs become more complex and more challenging – through neglect they become worthy of support,…….from a multi disciplinary team…

        and a free at point of cost to LA, ATU. ?

  4. Pauline Thomas permalink

    Many times we question how much these companies are raking in when they take over the care of our loved ones in their ATU’s with ‘complex needs’ and/or ‘challenging behaviour’. There. I have said it too. However think how much money they must be paying to their staff for the wonderful expert care our loved ones are receiving.

    The ‘assessments’ are carried out by experienced psychiatrists. who use medication only as a last resort and then only for 2- 4 weeks because they do not want them to be hooked on benzos.

    They then have to employ staff to carry out the ‘treatment’. Therapists who are seeking ways of de-stressing them. Psychologists who are reassuring them with ‘talking therapies’. Highly trained and highly paid staff who are engaging with them with meaningful activities. All this assessment and treatment does not come cheap, especially when you consider how much time and energy these skilled professionals must use up.

    So lets not be too hard on them eh!

  5. Thanks again, Mark.
    We must use the right language, even if others want or try to avoid it. It’s hard to break the cycle, but there’s nothing to lose, there’s only gain, as no one can deny simple facts.
    Most people at our MDT meetings aren’t that skilled at discussing complex needs anyway.

    I also don’t like the term challenging behaviours as it becomes a label, because no one is interested in the cause, so it never goes away, and the label sticks.
    We have a duty more than professionals to keep things truthful and simple, talk about love, loneliness, rejection, loss, need for family, trauma of being disabled, yearning for friends – all the things that everyone wants.
    When I started mentioning rejection years ago, I saw the word start being used in reports a lot more.
    The language of assessments is dead – we need normal vocabulary.

  6. conrad wells permalink

    thanks to you all , Mark I have shamefully quoted you I’m afraid to our executive team as my organisation is moving towards supporting young people with “complex needs” sorry didn’t have a trifle did use orange jelly does that count. Joking aside I will always use your blog and contributors to keep me and others in my work “honest” and be aware of what we do and say and the way we are seen. Weary mother your example with the sandwich, case in point of knowing people and what they need.

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