The Connor Manifesto. A response

Yesterday evening we were completely bowled over, and pitched into a tap tear space, by photos of LB’s buses. We’re trying to keep a lid on the #107days actions and not give too much away in advance but this was too much to not shout about. How.fucking.awesome?

What else is there to say? The dude had massive, steadfast, consistent dreams around ConnorCo and a fleet of vehicles. There are now three (3??) double decker school buses dedicated to him. Just makes me cry. With more to come on the fleet front…

Pretty much straight after seeing these pics, I got an email from the Real (and now retired) David Nicholson, responding to our Connor Manifesto. All power to Rodgers Coaches and the social movement that is #107days that I didn’t read this email straightaway. I hunkered down celebrating/weeping/reflecting on the realisation of LB’s dude dreams. Dreams I never thought imaginable.

But hey, how did David Nicholson respond?

Thoughtfully, comprehensively and apparently sensibly.

Some of the content is a bit chuck in the nearest skip because words won’t make a difference. Ambitions to do x, y, z …. “Commissioners undertaking visits to the services they commission in recognition of the importance that they see the service first hand” is meaningless given what we now know… They have to know what they are looking at and actually act if what they see is poor. Not just ignore it.

But there is commitment to following up all deaths in mental health/learning disability services provided by Sloven since 2011 with an independent panel, commissioned by NHS England, formed to review these deaths and make a recommendation about whether further investigation is needed.

There is a plan to take forward work to establish a national learning mortality review to deliver improved information about the deaths of people with learning disabilities.

And reference to the recent review of the Mental Capacity Act and work with the CQC in ensuring monitoring the use of the Mental Capacity Act in the hospital inspection regime.

I’m too caught up with thoughts of LB’s fleet, and what should have been, to respond sensibly right now. But I will say thank you for making LB a priority in your final days at work. It means a lot.

And I hope others follow your lead.

15 thoughts on “The Connor Manifesto. A response”

Wow! LB what a great tribute to your life and love of busses this is definitely time for change and I am travelling on your bus.

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Just wonder if Slovens commitment to follow up all deaths in mental health/learning disabilities services will include services provided by large care not for profit organisations who also regularly fail people with learning disabilities under the watch of Commissioners who when challenged will close ranks with these Charities. They advocate care and personalisation being their priority which result in using their own day service and then spend the remainder of the day watching tv because there are no drivers or they are short staffed no real choice here there are some amazing projects available but rarely given the choice of using as their own services are promoted. Agency staff who in some cases have done a minimum of two weeks training (as required by OCC) and have no experience in care some are better than others I have seen cold baked beans poured onto a plate food boiled and cooked until,the nutrients have gone a resident ask to leave the lounge of his house so that another resident could use the urine bottle whilst seated in his arm chair. An autistic lad trying to dry his clothes and repeatedly returning to the tumble dryer to check but not realising that the humidifier had to be emptied sometimes or it will sop working. Staff rarely engage with the person their are supporting and will watch a programme of their choice usually Sky News and will focus on their mobile phones and some times converse with others in their own language. This is called “supported Living” and it’s a joke I would imagine that if you are learning disabled you accept this new life and embrace it and if you don’t no one will listen or believe you if they do listen they will promise change but it never happens when people visit it’s like a school inspection everyone joking and happy and on their best behaviour no one really knows what goes on behind those closed door! The most vulnerable people in our society who have complex needs are cared for by poorly trained people who might struggle to understand the most basic instructions printed on a box to prepare a meal have probably never witnessed a tonic clonic fit all training for this usually done on the job. I have read some where that more people die from epilepsy than aids! If you have poorly controlled epilepsy and have a learning disability you are more likely to die from SUDEP. If you are epileptic it is vital that you have same brand drugs and not mix and match UK and Parallel Imports. Few professionals are aware of this fact don’t get me wrong there are some brilliant and dedicated carers out there but they are in my experience certainly in the minority. Despite all the hypo very little has changed for our precious loved ones. Loving the busses LB x

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sarasiobhan on April 5, 2014 at 3:27 pm said:

Yep, there is so much that needs to change and the whole supported living gig for learning disabled people doesn’t bear much scrutiny in too many cases. Not good enough.

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