The silent minority


Awkward beginning to Tuesday. At the crack of dawn Rich and I sat on the BBC Breakfast sofa. 6am-ish. Twenty minutes (literally) after tipping out of bed. The CQC deaths review was published with failings in death investigations found across trusts. Findings of crap. The focus on learning disability and mental health lost in the review. The obvious next step to the Mazars review was to explore whether the discrimination it revealed was replicated across other trusts. The broader focus on all deaths in the CQC review obscured this focus. 

I had little to say on the sofa about the broader findings of the review. It’s shite. Of course it’s shite. And needs urgent attention. But urgent attention to the broader picture ain’t going to get anywhere near to addressing the (soft) eugenic practices happening in full view. (Another study last week reinforced the shocking premature mortality figures for learning disabled people.)

This was not the story the BBC were running with.

Luckily Rich (a political scientist) shone. And the second sofa slot/day of various news gigs became manageable with the intervention, via twitter, of a dedicated and passionate BBC fairy. And sensitive, thoughtful engagement with various people across the day.

In stark contrast to the review findings.

This stuff really ain’t rocket science.

The silent minority

Two weeks ago, during the final meeting of the CQC deaths review expert reference group, discussion was around the inclusion of mandatory investigation of the deaths of learning disabled people as a recommendation. It was clear that these deaths were simply not scrutinised. They were expected and accepted. Howl.

The final report had one recommendation relating to learning disability/mental health. Recommendation 4.


As recommendations go (in the unrelenting carousel of NHS reports) this must feature in the top three of all time ‘what the fuckwhattery?’ recommendations. An extraordinary leap from mandatory investigations to nothing. When I asked for clarification, the CQC said it meant ‘different parts of the health services need to work together to reduce the increased risk of premature death’. A year on from the Mazars review, further evidence of deep inequalities and worse within the NHS, and a recommendation we could have drummed up, at no cost, in seconds.

The words ‘missed opportunity’ just don’t work here. 

In 1952, because of the prevalence of certain deaths, the government set up the Confidential Inquiry in Maternal Deaths focusing on the deaths of women during and up to six weeks after childbirth. Supported by a range of experts, with clear, careful and methodological scrutiny, this inquiry has reduced the annual maternal death rate from 90 deaths in 100,000 to 10. Jeremy Hunt insists that the LeDeR programme based at Bristol University is performing this function. It’s not. It’s not designed to. Nor has the funding to. There is no effective scrutiny of these deaths. (Can you imagine?)

We’re left with incontrovertible evidence that certain, marginalised people die prematurely. That they are dismissed in death as well as life. That their deaths simply don’t count as important enough for serious review/scrutiny. This, in turn, means they will continue to die early.

The CQC decided on the recommendations in the review. And carefully spread the responsibility for ensuring these actually happen around various organisations. With no single point of oversight. Not a sensible model. Whatever spills out of the half arsed, ‘learning disability’ badged non actions that will be talked about, a decision was made to bury the real scandal here. In Recommendation 4.

8 thoughts on “The silent minority

  1. It is poor that there weren’t concrete recommendations for improving the care of LD people in the report.I hope there is still the opportunity for CQC to improve its inspections to let trusts know they will be focussing on care of LD people. I am not sure how some of the ideas put forward at yesterday’s Board meeting become practice. I hope they do. I hope they will still be listening to us.

  2. reports and recommendations should come to an end. Attitudes held that certain lives are less worthy of preserving cannot be policed but actions and inactions that lead to wholly preventable harm and death can be.
    An admittance that there exists an increased risk of early death for some people is just not good enough, the statement should be that there will be no tolerance of any increased risk . I hope the HSE bring a prosecution and that you are able to bring a civil action for Connor and that some other people will manage to do the same. Heavy fines from the HSE and warning shots fired may yet bring about change . Trusts must be made to feel that they ignore their equality duties at their peril , the duty of care already exists.

    • It is admitted again and again for 10 years that early death happens for no natural reason.
      It’s near Christmas, and statutory bodies are maybe saying it again because of the time of year, but as I re-read, there are no stronger words.
      No planned action.
      The NHS for all came about because of one man leading and making the powerful to do the right thing – just one honest man.
      And now we have no leader (or hero) amongst the huge NHS.

    • “Heavy fines from the HSE and warning shots fired may yet bring about change . Trusts must be made to feel that they ignore their equality duties at their peril, the duty of care already exists.”
      Whilst I agree in principle, a fine will move money from one public purse to another one.
      It’s the PEOPLE who claim to be the Directors and high-level managers who are in charge of these areas of responsibility who should carry the can. And that includes NEDs (Many who have so many “positions” on their CVs that they probably forget which Board they’re at).
      Dismiss the guilty, no secret severance deals.
      NEDs who pretend that they in some way represent Patients & Public should be elected by them, and report back to them.
      And that goes for NEDs on the CCG Boards.
      Enough of these highly paid CEOs of bloated, Government subsidized, VCS organizations speaking on our behalf.
      Enough of self-appointed Patient Leaders being drafted onto NHSE boards and committees.
      Let we P&P speak for ourselves.

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  4. Hmmmm….recommendation 4: ‘NHS England, NHS Improvement and Royal Colleges combining efforts… Should improve consistency, definitions and practice’…. This sounds as if something ‘new’ is needed to solve issues. Am I oversimplifying things? (I know I am known for boiling things down to lowest demoninator and stating the obvious but…) surely if the practices and procedures ALREADY in place were CONSISTENTLY applied and followed by these highly trained professionals (and others), then we would not need to be having this fight. Definitely, those practitioners who DO adhere to high standards shouldn’t be vilified or persecuted for holding to those values, rather, celebrated for insisting on the highest standards! (And yes, there is a veiled story there). At the end of the day, ‘with power, comes great responsibility’. Please responsible authorities with power, follow your own rules- EVERY LIFE is precious, protecting all lives is the responsibility of health professionals, no matter what level they work in or how much/little they are paid. We don’t need more rules… Just follow the ones you have. Surely that’s all that’s needed to stop people dying that needn’t have died? If you can’t follow the rules, if your staff don’t follow the rules, if someone dies in your care from rules being broken, then you/they need to go.

    • Exactly this – yes! The necessary procedures and protocols are already in place.
      Just prior to the publication of the SCR report into my 33 year old son’s premature and preventable death I suggested an extra recommendation. It was that everyone in all the agencies involved in care should just do their jobs properly. Follow their own guidelines etc.
      Needless to say, this didn’t make it into the report. I was serious but heigh-ho, what do I know? I’m just a grieving mum.

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