The unmaking of a scandal

When we met Jeremy Hunt back in the day (I know), it was a deeply frustrating meeting because he didn’t listen. And insisted that improving NHS patient safety generally would improve the lives of learning disabled people.

He didn’t seem to understand that learning disabled people typically die prematurely. That there is, too often, a lack of value and worth ascribed to certain lives, and the denial of an imagined future. That these factors feed into the ways in which people are treated. In life and death.

He used the Mazars review, which found that less than 1% of the deaths of learning disabled people and older people with mental health issues were investigated, to ask the CQC to review NHS death investigation processes generally. With a ‘focus’ on the deaths of patients with mental health issues/learning disabilities.

Mike Richards, CQC Chief Inspector of Hospitals, made a statement about this review in April 2016. He didn’t mention learning disability or mental health.

A CQC scoping paper (undated) about the review refers to mental health and learning disability once:

cqc

Less than 1% of deaths investigated translated into ‘important challenges around multi-agency working’. Simply extraordinary. The incontrovertible evidence that, in a so called advanced society, certain deaths are simply rubbed out, erased. Again. A double rubbing out.

I’ve not read the review which will be published on Tuesday. The CQC thoughtfully shared the section mentioning LB. This (now amended section) translated less than 1% into ‘less likely’:

The (Mazars) report also highlighted that certain groups of patients including people with a learning disability and older people receiving mental health care were less likely to have their deaths investigated by the trust.

My maths is appalling (just ask Rosie…) but I know less than 1% rings deeply concerning human rights bells. And, you’d expect, demands immediate scrutiny and action.

The writing is clearly on the wall for the unmaking of a scandal. Almost a year to the day of the BBC publishing the findings of the Mazars report. The broader findings of the CQC review will no doubt feed Jeremy Hunt’s seemingly insatiable appetite for all things human factors at the expense of a focus on the erasure of certain lives (and deaths). I hope both the report, and his response to it, prove me wrong.

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23 thoughts on “The unmaking of a scandal

  1. The stats for premature deaths and poor quality of life outcomes for people with learning disabilities or mental health problems remain shocking, although these stats have been collected for many years now. I have effectively been a participant observer in the mental health system in north Wales for the past thirty years (not that this was ever part of my life plan) and I have watched how people with severe and enduring mental health problems have been frankly exterminated by these ‘services’. Numerous people who were inpatients along with me when I was first admitted in the mid-1980s are now dead. After every death, in the face of the distress of other patients, the reaction from staff was the same – ‘ooh but they were very ill’. When I first started confronting staff about such deaths and the sheer neglect (and gross incompetence) that usually accompanied them, staff again shrieked at me ‘they were ill’ even when I could recite the details of the neglect/abuse that I had witnessed. Yes they were ill, but I watched at first hand how they were treated – their physical health problems were usually ignored no matter how severe, many doctors’ prescribing practices were seriously irresponsible, patients who were severely distressed or suicidal were dismissed as ‘attention seekers’ or even having ‘personality disorders’ and in more recent years patients were told that they had to ‘take responsibility’ even when their clinical conditions clearly prevented them from being able to do this. At the same time, suicide statistics in north Wales were so high that they formed a statistical outlier. It didn’t take a genius to work out what was going on – but the poor outcomes for mental health patients were simply attributed to the intractable problems caused by mental illness. I and my fellow patients would certainly have had our lives disrupted to some extent by the effects of mental health problems – but if the mental health services had not been so negligent and abusive an awful lot more of us would have survived and many more people would have had very much more fulfilling lives. Your blog is pointing to a very similar situation prevailing with regard to people with learning disabilities. You are right to say that the problem is that some lives don’t matter. When I started my PhD and started talking to other researchers about some of what had happened to me, I was told on a number of occasions that ‘this shouldn’t have happened to someone like you’. So even some social scientists fall for the line that there are some people who obviously can be expected to have such experiences of neglect and abuse…

    • Sorry to repeat what we already know.
      To seriously neglect and to stop others having fulfilling lives when it was possible, is evil – there’s no excuse.
      Whether mental illness or learning disability (learning disability or autism with or without mental health problems; there is a higher incidence of depression and anxiety in LD, etc., please let’s not be so black and white re neurological or psychiatric, because who is going to differentiate anyway when they can’t even treat obvious physical illnesses..?)
      How do we address the incompetence of bad psychiatrists, as the least competent doctors move into this field? These are horror stories.
      The best psychiatrists exist too, so we need choice, proper second opinions, family advocates from a specially created charity – a new charity that isn’t just business.
      We need better exposure, even if much of the public can’t relate, it still needs to public – because the elderly problem is much the same.

  2. We have learnt of a very old case in which Sloven promised a bereaved relative that ‘bespoke training’ would be provided to address the ‘poor attitude and behaviour of staff’ ‘caring’ for the deceased. The relative learned only very recently that the person, who delivered the training, was actually one of the key individuals that were the subject of the original complaint! Reminds me of the old saying – those that can do; those that can’t teach. This is not normally an adage to which we subscribe – but it certainly rings true at Sloven.

    Sloven’s very latest ideas on ‘independent investigations’ and its attitude to customers is available at: https://999crash.wordpress.com/2016/12/05/plus-ca-change/ .

  3. As the sibling of a man with a learning disability who died suddenly and is another number added to the shameful lists of avoidable deaths of people with an intellectual disability in the UK, I have become ashamed of my country. Despite Winterbourne and it’s aftermath, other forms of direct abuse and criminal negligence are going on in so called care homes all over the country, unnoticed. If these deaths are so extremely rare or aren’t happening how is it that in a very short space of time I have met two people who share identical experiences as my own and whose close family members with a LD suffered and died undiagnosed and avoidable deaths in different areas in the UK within the same short timeline in registered care homes in one of the wealthiest nations in the world. Unless the family suspects foul play and has the financial means and the stamina required to take matters further deaths are unlikely to be investigated.

  4. There is so very much that is wrong. Here..

    My sons flat mate says so often – so truthfully – so sorrowfully – ”they don’t listen – they don’t never listen”.

    She/he nearly died of shockingly poor and neglectful social care – then the same from NHS.
    and If I and sons family had not intervened throughout the hideous experience – and supported all in hospital – I believe he /she could now just be another not investigated death statistic.

    Son could have lost his sight when neglected by LA and NHS before, during and after an eye operation – but for mum. And more of same.

    The current callous tug of war between LA and NHS – around who’s responsibility it is to ensure the prevention, diagnosis and treatment of ill health – was almost fatal for flat mate.

    Then there is the other hump in the LD person’s life span road – constructed in the briefest of contact – out of jargon – and certainty – that all parents are at best ‘over weaning – all are not very knowledgeable about their own sons and daughters..

    This jargon constructed certainty – plus convenient evangelical cost cutting conviction – cures physical and learning disability. Now re- abled – cost/support successfully slashed. Told when asked ”who will help us now’. ‘you will do it by yourself now like every one else ‘ (care manager to my son and flat mate).

    Then son/daughter cannot.

    Get very sick. Professional person takes a week or so to respond – and says ‘not my job to take you to doctors – far less to hospital’. …..so better ask your mum or dad’. (If you have one)

    People die of it . No one listens.

    ”No one never listens”

    Only mum and/or dad. .

    But what do they know ? What can they do….for no one listens.

    • Yes, weary mother, I did the critical care, while others you describe took money but didn’t do.
      If a picture says a thousand words, we must use video.

      Oh, we are very, very knowledgeable about our sons and daughters – to say otherwise is just denial.
      Over-weaning is jargon for devotion.
      The meaning of Christmas won’t be understood by ‘them’ either, only excessive buying of presents with money not earned.

  5. @Sally Baker – I have a very strong notion that the decimation of mental health services over the last decade or so has been masked in part by purposely diagnosing people with conditions that don’t require inpatient treatment or that are considered to be ‘untreatable’ or flat out denying they are ill when they clearly are.

    Trends in diagnosis follow trends in treatment, they also follow trends in disposal where disposal is the preferred option. No idea if the data is there to check that.

    • I absolutely agree Marie and have touched on this in publications – my friend Prof BJ Brown has written more about it. We were particularly struck by the explosion in diagnoses of ‘borderline personality disorder’ in recent years. I knew an unusually radical GP in north Wales who has now retired who observed some four years ago that ‘treatable mental illness is being defined out of existence’. Another GP told me that he didn’t know how the local psychiatrists saw their role these days as any referral was met with a letter to the GP saying that ‘this patient will not benefit from psychiatric input’ no matter what the presenting condition was. And it was a standing joke among patients that ‘it used to be that you couldn’t get out – now you can’t get in’.

  6. Yes, that this is one of the wealthiest nations, is what makes it so much worse.
    British values of justice and fairness and equality that put the rest of the world to shame, I’ve always believed, seem to also disappear completely so easily.
    It’s easier to get help if you’re from an ethnic minority (I am), than if you’re disabled.
    And what makes ‘normal’ people more deserving anyway? They’re going to get old, and may be abused in older people’s care. Yes, older people are denied care too, as they’re not worthy either.

    • Oh, Denmark is probably ahead in it’s care for people with disabilities.
      I went to lectures on this years ago. They were way ahead of the UK. I wonder if they still are.

  7. “Follow the money”
    The whole concept of Public Service, ideologically as well as practically & financially, has been strangled and buried in an unmarked grave. Like education, “care” of the needy & vulnerable has been forced to adopt a business model. Result – the cheapest provision that can be achieved is rewarded. Staff are poorly paid, inadequately trained and badly managed. They are drawn in the main from sections of society that for a range of reasons find it hard to get employment elsewhere. Business owners/providers by their nature, exist to make a profit. It’s a perfect storm.
    They get away with it because the vulnerable and old are generally expected to die. When neglected and ill treated, they do and this just serves to reinforce the myth.
    Meanwhile families battle on, in the face of this huge lie that is convenient, thus promoted, by government, charity and private providers & believed by those not immediately involved.
    It’s hard not to despair

    • It is true that there are huge companies holding LA contracts for community support. They operate all over UK.

      They can operate on smaller profit margins because of the scale. This must put huge pressure on each agency satellite.

      My son has seen the very best – kind and caring support from people paid barely enough to live on. People outraged at the impoverished lives of the people they support. These wonderful people struggle under dreadful time pressures – and a few minutes with each person – yet they give extra out of their own time – to provide some continuity and security and friendship. They do not cross to the other side of the road.

      He has also seen the opposite – ‘support’ that was manipulative, dangerous and nasty. Contracted by the LA – yet all monitoring of agency staff left to me.

      Staffing can be so tight that agency managers (working on lowest cost tender) can be afraid to fire bad care staff. Complaining to them – can rock another valuable relationship.

      Over the long years I have met magnificent social workers. – and they have all suffered for their openness and integrity. Many still out there – mainly not promoted.. Thank you – all.

      But professional social workers sign up to do this job – professing to value and enable our sons and daughters – and routinely assess our sons and daughters as deserving of a lesser life than their own sons and daughters. Leaving ours isolated and miserable at best and always at risk.

      It is more than hypocritical of them to use the silly empty ‘choice’ and involvement words knowing – that in their LA the words do not deliver anything at all but the most basic of existence (if that) and huge stress and anxiety – for every one.

      As a mother – ‘other’ – a family carer with a long career in health and social care I have not held back in challenging my peers on this. This is met by resentment ruffled feathers and some times worse and aggressive defensive closed ranks when crises occur.

      We parents who do – do not challenge easily – all takes some more family life and joy and energy – we no longer have.

      Completing paper to leave our valuable people isolated in unhappiness – at same time using silly in house words that have no positive value at all in reality – to screen it – and not doing anything to admit it or stop it – is very, very wrong.

      We mums and dads ‘others’ are not just having a go…again..

      People can die from it.

    • yes the unspoken expectation that death is coming sooner rather than later , personally witnessing the provision of a seating solution to someone in their forties to meet all eligible needs, unwritten acceptance by all involved that X will now sit housebound waiting for death . No care plan , no life envisaged . Hard not to despair but every action against this evil counts. Whistle blowers , families and ‘ others’ must continue to challenge .

    • It is a perfect storm.
      Even small providers are into the big money. LAs will accept anyone to take on care – experienced or not.
      But no, the disabled can’t just lie down and die, while others fill the coffers. It’s not happening that easily.
      Despair isn’t really an option, although I agree it’s hard not to despair at all. Action’s the option – talking openly as we are doing.

  8. So Sad to hear about this !
    Can not quite understand if this is about Institutional Psychiatric Care or, Individual Patients ? Not that it maters ! We are talking about a Human Being for Christ’s Sake !
    I Suffer from Depression ! I will not go into Details, but Sufice to say, life at the Moment feel’s Very Intense and Overwhelming.
    Today I was told to, Leave the Bus or the Police will be Called, after I had said the :- ” F ” Word to the Driver of a Follow on Bus, who had asked us to Transfer to His Bus.
    The Bus was Late, as it can be so many Days of the Week. I just had enough and Voiced my Objections in the Strongest Terms.
    I’m not saying I was wright to do so but, today I had Just Had Enough !

  9. Thank god for Sara and Rich and her family, friends and everybody else who supported her fight for justice. It is only her tenacity and the absolute determination not to lay down and roll over in the face of such dishonesty and wickedness from Sloven, etc. that has got the government to at last start listening.

  10. People are dying from being different.

    People are dying in huge numbers just from (in) difference.

    If say, people with red hair and freckles (only an example) are proved (by a MAZARS) to be routinely – and generally across UK to have died/be dying in huge numbers in NHS from neglectful and incompetent Social and Health care and support – this would be viewed as an outrage ? Surely ?

    This would be seen by police and public as criminal. Surely ? This would be referred to and dealt with/by criminal justice system. Not just another CQC etc report. Surely ?

    It would be examined in court as manslaughter by (in) difference ? surely ?

    If not why not ?

  11. …….recognition today of need for all of our sons and daughters to be seen and assessed and supported by LD nurse on all admissions to hospital – common sense ? GP’s…also ?

    At same time is OK that the rest of our sons and daughters lives – all their choices and
    ‘enablement’s will continue to have pot luck – be handed over to anyone from the job center – who are given un- monitored control over all else – wellbeing: – life – safety – family involvement – happiness etc etc.

    NHS LD nurses going to be very busy ?

    • The problem is many people don’t want to be busy. They never get to see results from good work and teach their children to do the same. They must think doing no work is the best life – but it’s at the cost of whole families’ lives.
      If parents do the planning, or at least the thinking and planning, other staff can carry out things that those needing help actually like doing. Or plan with parents.
      But don’t tie parents’ hands behind their backs, as has so far happened too often.

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