Dark places and being peggable

The leaking of the Sloven governor’s emergency motion was a bright spot. Whatever bickering and political wrangling it has generated, Mark Aspinall called it as it was, and is. Simple as. It’s now up to the remaining council members to demonstrate their integrity and act accordingly. With appropriate scrutiny from the regulatory and public gaze.

This latest twist has generated a lot of ‘thank fuck for that’ type comments from family, friends, colleagues and supporters. People have been coming up to us in the street, on the bus, in lifts, saying they can’t understand how the Sloven board are untouched (well other than Mike Petter’s (possibly stage managed) exit). Nope. Neither can we.

We get emails from people about how the campaign has given them the energy, confidence, fight to try to get some accountability and justice for the death of their child, sister, brother, partner, parent, friend. This is sort of good. Only ‘sort of’ because the system shouldn’t be so consistently shite. We shouldn’t have to draw confidence from other people’s experiences. The right thing should be done. With the lightest of family involvement. But we all know this is bollocks when it comes to preventable deaths in the public sector. Particularly those involving certain people.

There has also been a lot of ‘inspirational mum’ stuff…

One of the things that came through clearly from the STATT records was that LB fully expected me to come and bring him home. [Howl]. Of course he did. I was his mum. I fought his corner with every bone in my body from the moment he was pegged as peggable. From the moment he started at an ‘integrated’ nursery in which the induction session involved only certain parents and pointing out separate pegs for the special needs kids who ‘get transport’…

Endless battles. Transport, after school club, respite, getting a diagnosis of epilepsy, transition, direct payments, disabled parking bays….

And then, stupidly, thinking he was temporarily in a safe space, if nothing else…

When I got the STATT records, back in the day, I cried in a new way. A different way to when LB died. Which was also indescribable crying.

Over two years later, we sat through the inquest evidence. Further unfolding of the (inevitable) preventable death of LB. With a topping of toxic mum blame. And still no accountability.

The simplicity and truth and certainty LB felt, recorded in the records. Even in that space. A space in which he was brutalised and had pretty much everything he recognised stripped from him. A space in which he was told to attend stupid fucking tea and cake groups because he’d be allowed home earlier. A space in which he was given bonjela to put on his tongue by a careless and arrogant psychiatrist who denied he was having seizure activity.

A space in which a combination of Sloven incompetence, arrogance and obsessive focus on corporate identity and reputation (rather than basic patient care) together with disinterest from local commissioners, a wider inertia and disregard within health and social care, led to a vacuum in which he (like so many others) died.

A space now documented and evidenced at length. With no accountability. I’m not ‘inspirational’. I’m just doing what I always did for him, until I took my eye off the ball and handed the baton over to a (known to be failing) organisation. And I will continue to do it until there is justice. And accountability. Along with the other #JusticeforLB campaigners.

3 thoughts on “Dark places and being peggable

  1. There is something happening Sara ,
    pegs are pegs and children are children, but a parent’s anger is formidable. I once hit a man because he knocked down my three year old while we walked through a pedestrian precinct. He was showing off to friends and would not apologise. I slapped him across his face and broke his red fashionable glasses. I have never regretted it and it still makes me angry. You are leading a tide of dismay at the complete state sanctioned lack of accountability impacting on our children, thankyou.

  2. We should all be able to trust the NHS to look after the people we love. We have to. It is not you who took your eye off the ball, it was Sloven. That their poor care has been exposed (thankfully) is down to you. Mums are the fiercest fighters for their children.

    I hope we can trust Tim Smart to finally change them and get the people responsible to leave.

  3. Sloven is systemic, and, as they have stated, not an ‘outliner’.

    It is not just them, or indeed all the ATU NHS public facilities, that are managed like this, it is also all NHS private like St Andrews.

    And, more importantly all the independent/supported living Units, owned by private companies, like where Thomas Rawnsley died.

    These are the places, where the 3500 being removed from NHS ATU. will be placed under the MCA, which is for life with no reviews, and no publicity.

    The Court of Protection has standard orders, that once an application has been made to them, the parents cannot on pain of contempt and prison, disclose either the details of the case, or the services their vulnerable child is receiving.

    So despite COP judgements, now being published all is still hidden.

    As judgements in the lower court ie County Court are not published and even when they are reveal little detail of the case.

    Paula Rawnsley was gagged. This is why there has not been a single petition by parents whose children are trapped for life in enforced supported living units like Thomas.

    Once a person is deemed ‘incapable’ under the MCA, and it appears, all that are targeted are, they become a non person legally.

    They are deemed not to be capable of making any decision even when they bathe or who they see.

    Yet the court vehemently protects their confidentiality by gagged their parents.

    Yet if these ‘incapables’ were allowed they would scream to be heard that they are suffering, abused and want to be free.

    The confidentiality of the individual social workers, experts. Managers is also largely irrelevant as these people are merely tools/roles, in a system that can be replaced in a moment, without changing that system.

    It is their actions within that system, and the system, that is important, not any particular individual.

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