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Not The Voice

June 20, 2017

Can’t sleep.

Having watched the Dispatches programme about the BUPA care homes, followed by the Panorama programme on Grenfell Tower, perhaps that’s not surprising. What is keeping me tossing and turning though is the report today about Danny Tozer’s death in a Mencap run supported living home.

The piece in the York Press is here:

The story has distressing echoes of Connor Sparrowhawk’s death in STATT. Scroll down the article to the statement from Mencap and it feels like fucking Groundhog Day. Following a well established template, the Mencap statement has the same nauseating mixture of PR spin and damage limitation as Southern Health at their very worst.

The report points out that there was no immediate investigation by Mencap following Danny’s death. This is the charity that started the Death by Indifference campaign. This is the charity who issued the following statement following the Mazars report finding about the number of uninvestigated deaths in Southern Health services –

With the backdrop of such awful pain and loss at Grenfell Tower, one thing that I have found incredibly moving is the awesome directness of the community’s speech. Each person interviewed is profoundly direct and refuses to engage with the bullshit officialdom is pedalling.

We, in the learning disabled community need to take a leaf out of their book. We can’t afford not to. Last year, when I wrote about the Mencap run, Hillingdon care home getting a CQC “Requires Improvement” rating, I was blocked on Twitter by Mencap’s CEO. Que sera, sera.

Please Mencap. You can no longer claim to be “the voice of learning disability”. Your integrity is shot. Local branches may still do wonderful things for their communities but nationally, you have sold out. You aren’t the voice. In fact, you take away people’s voices. Because you have created an “expert” platform for yourselves, your opinion is regularly sought by the media and in taking up the media invitation, you deny other people the opportunity to speak for themselves. Your Harold and Hilda public statements cloak you with credibility. That creates an unfair illusion.

Please Mencap. You cannot be the voice of learning disability and employ the same shoddy practices that you openly criticise in others. Dangerously low staffing levels, barren lives for the residents are common themes in your residential services. You cannot promise in your response to the report that you are working on improving services and engaging with families because this is so basic, a charity of your standing should never get this wrong.

Please Mencap. I’m actually becoming quite scared of you. Having homes in my area, I feel frightened that my son will end up in one of them, one day. The disconnect between your words and your actions is starting to feel sinister. It’s not a good picture to present to your clients.

I’m not sure what I’m asking of you Mencap. I’m no good at calling for things, which is your modus operandi. I do feel that you cannot be the voice of learning disability AND a major service provider. You’ve already been fatally compromised. Perhaps you could decide where your priorities lie and put your eggs in just the one basket.

One immediate thing you could do Mencap. Danny’s family will not be entitled to legal aid to fund legal representation at his inquest. If you want to really experience what it is like to be voiceless, you could forego your own legal representation. Or alternatively, you could demonstrate you’re the voice of learning disability and fund Danny’s legal representation, so at least the inquest will be conducted on a level playing field.

I hope Danny gets his inquest. I hope the family get the truth and the justice Danny deserves.

Everything feels at a crossroads at the moment. We can take a right turn, further along the road to hell that allows Danny to die a needless death and the ensuing nightmare of trying to discover the truth amidst dreadful official stonewalling and intimidation.

Or we can take a left turn and future Dannys might have a life worth living.


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  1. Jo Brown permalink

    Sadly…well said. I work alongside advocates with learning disabilities in a genuinely user led organisation. I am passionate and proud that people on our management committee trust me to work alongside them, advise (NOT TELL) them what their options are and any pitfalls I think there might be. Its hard work. Not because the job itself is hard…it is challenging and wonderful and a privelege…but because of the ‘shiny veneer’ that sits on many services, of the places that purport to be ‘userled’ and blatantly wouldn’t know what that is if it hit them in the face and crucially because I watch people with learning disabilities work together as competent articulate adults making tough decisions to keep their organisation running, and then their world crumbles because of crap support at ‘home’.

  2. weary mother permalink

    How many more LA funded ‘tombstones’ will be carved with ”lessons learned” for an epitaph ?.

    Where were the York commissioners? Were they monitoring only contract and cost..and all were just .too ‘busy’ to monitor the care they bought ?

    I too saw the shocking BUPA programme.

    The same ghastly lessons not learned – families not heard..families blamed..families seen as trouble makers, all..?

    The CQC willing once again to give an abusive organisation, yet another chance to keep on doing it.., gifted yet more time to ‘improve’.

    Wait.from a safe distance, willing once again to risk the most vulnerable people existing on, in dreadful abuse, indignity and misery ?

    Would CQC leave their own granny, mum or dad, son or daughter in such a place – and just walk away from them..Of course not.

    Only strangers.

    ‘Less’ worth …. Less worthy,…..Strangers.

    Their value weighed and measured, in two easy words.. ‘lesson learned’ .

    A stranger



    Filed away.

  3. We should take a leaf out of their book, because our homes and lives are destroyed in a different way by no expertise or protection of our rights.

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  1. - Bringing Mencap to a standstill #treatmewell

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