I would thank you for the courtesy of replying, however belatedly; but it’s not exactly courteous of you to reply using a stock PR template answer that makes it painfully obvious that you have neither read my original message, nor bothered to consider the issues involved, is it? It’s dishonest, since you are trying to convey an appearance of caring when you patently don’t consider it a worthwhile use of your time to give two (genuine) hoots; and foolish, because it doesn’t take even average intelligence to spot the discrepancy.
Would you like to start again and do it properly this time?
While the Bill has not, as far as I know, been taken up since the Ballot, I would be grateful if you would actually look at it and let me know how you consider its provisions could be used to improve any future legislation, such as that which may arise from the Green Paper ‘No voice unheard, no right ignored’.
I would also be obliged if you would let me know whence you obtained that template response you sent me. It is, regrettably, seriously at odds with the facts in several respects, and needs to be corrected at source.
The Disabled People (Community Inclusion) Bill 2015 aims to build on the provisions of the Care Act in order to put into effect the aspirations of the post-Winterbourne View JIP and similar programmes, to ensure that nobody is sequestered in unsuitable accommodation simply because there is nothing appropriate available. If enacted, it will give disabled people, like my younger child, the same sort of choice and control over living arrangements that non-disabled youngsters can reasonably expect to have. The provisions of the Bill are needed in addition to the Care Act, to give effect to disabled people’s autonomy. Those provisions are also more appropriate to the lives (as opposed to the healthcare) of disabled people, than the suggestions in the Green Paper ‘No voice unheard, no right ignored’, which are heavily medically-oriented. Finally (and this is where Connor Sparrowhawk and the ‘LBBill’ informal title come in) the Bill’s provisions differentiate between learning disability and mental illness. While an illness can co-exist with (and even on occasion cause) disability, disability is not an illness and should not be considered as one.
The conflation of ‘learning disability’ and ‘mental illness’ was one of the errors that led to Connor Sparrowhawk being sequestered for an unnecessarily long time in a dangerous Assessment and Treatment Unit that neither assessed nor treated him, and where his physical neurological condition was ignored, with fatal results. It was only after the second – family-initiated – post-mortem examination, that signs were found that before he slid unobserved under the water in his NHS bath and drowned, Connor had probably had one of the tonic-clonic epileptic fits from which he was known to suffer. Meanwhile, the Trust responsible for Connor’s care in the ATU, Southern Health, was publicly stating that Connor died from ‘natural causes’, even before the first P-M results were known.
As for apologies, Southern Health’s performance has been superb on the non-apology, the near-apology and the not-quite-an-apology, but decidedly underwhelming on the genuine regret, remorse or redress. In any case, even the most fulsome apology looks merely perfidious when, as Southern Health has done, the apologiser subsequently puts up (expensive, taxpayer-funded) Counsel at the inquest to argue that actually they were not at fault in any way because death by drowning is ‘natural’.
Of course neither Connor nor his parents were your constituents and I do not expect you to focus in-depth on them and their situation. I do, however, think it reasonable to expect you seriously to consider your own disabled constituents and respond to actual queries raised about possible legislation, rather than buying in a template PR response that does not address the issues brought to you, and which bears all the hallmarks of having been given a Southern Health-style mendacious spin-gloss.
Sent: Monday, July 13, 2015 4:57 PM
Subject: DISABLED PEOPLE (COMMUNITY INCLUSION) BILL 2015
Dear Ms Chrome,
Thank you for contacting me about the #Justice for LB campaign. Please accept my sincere apologies for the delay in writing back to you.
Like you, I was greatly saddened to learn about the case of Connor Sparrowhawk. I understand that post-mortem findings have shown that that he died as a result of drowning, likely to have been caused by an epileptic seizure.
I am deeply sorry that Connor died whilst in the care of Southern Health NHS Trust who I understand have acknowledged that they failed to undertake the necessary actions required to keep him safe. I think it is quite right that the hospital has now apologised unreservedly to Connor’s family.
I have been made aware of the proposed Private Member Bill. I think it is an important contribution to the ongoing debate about how we best improve care for people with learning disabilities. You may be interested to know that during the last Parliament, the Department of Health held a consultation called ‘No voice unheard, no right ignored’ which looked into precisely this issue. In particular, it included a section called ‘My right to be independent, to be part of a community and to live in a home I have chosen’.
I hope this is an area that the newly elected Government will choose to examine carefully before deciding how best to support and care for patients.
Thank you once again for contacting me about this important issue.
With best wishes,
Given-name Surname MP
Member of Parliament for YourConstituency
Parliamentary Private Secretary to Rt Hon Big Cheese MP, Secretary of State for Uh-Huh
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